Calquence (acalabrutinib) Mantle Cell Lymphoma (MCL) Non-Hodgkin Lymphoma

Jason’s Stage 4 MCL Non-Hodgkin’s Lymphoma Story

Jason’s Stage 4 MCL Non-Hodgkin’s Lymphoma Story

Jason is a New York entrepreneur, tennis player, theater-goer and traveler who says he loves the lights of Las Vegas.

Things shifted in 2019 when Jason, at only 39 years old, was diagnosed with stage 4 mantle cell lymphoma, a rare blood cancer that is more common in men over 60 years old. His diagnosis almost turned his world upside down, and he was thankful he had become an entrepreneur prior to his own treatment.

In this video series, Jason shares his story of diagnosis, clinical trial, treatment and how cancer changed his life. His story is such an inspiring example of patient self-advocacy.

Thank you so much for sharing, Jason!

Jason W's MCL timeline
  • Name: Jason W.
  • Diagnosis (DX)
  • 1st Diagnosis:
    • Age at DX: 39 years old
  • Symptoms
    • Hives
  • Tests for DX:
    • Bone marrow biopsy
    • PET-CT
  • Treatment:
    • Acalabrutinib
    • Lenalidomide
    • Rituxan

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

VIDEO: The Mantle Cell Lymphoma Diagnosis

His blood work and everything seemed normal. Except for the increasing itch and pain from hives and inflamed arms, Jason and his primary doctor thought it was nothing serious.

Specialists couldn’t find anything until he was referred to a hematologist. A bone marrow biopsy and PET CT later confirmed cancer. Jason was diagnosed with mantle cell lymphoma at a very early age of 39.

About me

I’m in New York City, and pre-cancer diagnosis, I was an entrepreneur. I guess I still am, and I have a small business. I’m a tennis player, a theater-goer. I like to travel. I like to gamble. I go to Las Vegas pretty regularly. I’m most passionate about my business, which is a production supply and walkie-talkie production services company in New York City and Greenpoint, Brooklyn, which is a great neighborhood in New York City.

I’ve been in video production services for over 20 years. In 2017, I started my own company after being a freelancer for many years. That was actually kind of a magical experience because if I didn’t start my company, I don’t know how I would have fared this storm.

If I was still in the freelance world, producing shoots or working for somebody 40 hours a week, I think that I would have some pretty significant challenges dealing with the cancer diagnosis and the treatment and the ongoing treatment. Being an entrepreneur has been very lucky and fortunate for me.

I don’t think it’s anything to worry about.

»MORE: What is mantle cell lymphoma?

My first symptoms

It was about 2.5 years ago, the summer of 2019, and the very first symptom was on my arms. I was getting a rash. It was very red and bumpy and itchy. It started on my forearms, and I really didn’t think much of it for the first 2 or 3 weeks. I really didn’t think much of it at all.

I was out to dinner with a very close friend of mine, Adrian, who happens to be a doctor himself. He’s a hospitalist at Weill Cornell, and he’s a really great doctor and a really great friend of mine. We were meeting up for dinner, and he said, “What’s on your arms?” I said, “I don’t know,” and he’s like, “you should have it looked at.” I said, “Yeah, I don’t think it’s anything to worry about.”

Another couple of weeks went by, and it was still there. His comment was sort of in my head, so I made an appointment with my primary care physician. I’m probably going 5 weeks after the first sign. I go into the primary care office, and at this point, there’s hives on other places than my forearms.

Mantle cell lymphoma diagnosis

The primary care physician says, “It looks like hives to me. Hives are really common. We get a lot of people in here with hives, and we run all sorts of tests and are looking into it. Most of the time, they just go away, and we never really figured out what it was.”

We talked a lot about it, like “Did you change your detergent, or did you change your soap?” Then he took a lot of blood and ran my blood work.

He’s a wonderful doctor. I love my primary care doctor. I still have him today.

He called the next day. “We got your blood results back. Everything looks perfect. Hopefully, this just goes away.”

I said, “Oh, great, blood work came back great. Hopefully, this will just go away.”

Time went by, and it started getting worse. It started spreading to other parts of my body. It started becoming more itchy, more inflamed. It went from just being on my forearms to being all over my chest and all over my stomach and down my thighs. It just sort of progressed.

I went back to see him again. He said, “I’m not quite sure with your blood work being right what it could be. Why don’t we look into going to an allergist, immunologist, rheumatologist-type person and a dermatologist?”

I went to somebody who had a specialty in all of those categories —allergy, immunologist, rheumatologist. We ran blood work like I’ve never experienced. The number of vials of blood that I gave and the number of tests that I did over the course of 2 months with this person was just over the number. The bill was also over the top. The only thing that came back was an elevated IgM. That was it. That was the only thing that came back irregular in my blood work. 

The dermatologist initially said, “I don’t think these are hives. I think it could be something else.” While everybody thought it was hives, he said, “There’s a chance it could be this. It’s a rare thing. Let’s biopsy a few in a couple of different places on your body.” He biopsied, I think, 4 areas.

We ran blood work like I’ve never experienced… The only thing that came back was an elevated IgM.

Describe the biopsy

It’s like a punch biopsy, where they basically think you have one hive that’s sticking up. They just take the whole thing and then send them to a lab.

They took 4 — took 2 off my back and 2 on my stomach, or something like that. Those came back as urticaria vasculitis, so that is hives. The vasculitis meant there were hives not only on top of my skin, which are traditional hives, but also under, in the derma.

I was getting hives basically on both sides of my skin, the exterior and the interior. We’re 4 or 5 months into this with me having hives, and they’re just progressively getting worse. There were some sleepless nights. It was unbearable not to itch them, and then it would create scabbing and blood. My sheets were tinted with blood spots.

It was painful. There were a few nights when the pain level was an 8 or 9. Looking back, I can’t believe I didn’t just go into the emergency room.

Looking back at what I was doing — laying in a bathtub and trying to throw ice all over me, doing all of these things to try and come at it — I should have just gone to the emergency room.

»MORE: Read in-depth patient stories and background on mantle cell lymphoma

This young girl comes in and tells me that we’re doing a bone marrow biopsy. She explained it to me, and I literally started crying.

Understanding pain tolerance level

The dermatologist gave me steroid cream, which was helpful. I put that all over, and it was really helpful.

As we were going through the diagnosis process, eventually I landed at a hematologist. The allergist-immunologist said, “I have to send you to a hematologist because you have an elevated IgM, but there’s nothing wrong with you. I assure you your blood work looks so great. But we have to do it. It’s called a rule out.”

I went to the hematologist, and I’m there for a rule out.

What’s a rule out? I don’t know what a rule out is. I went into the office, and they put me in a room. The PA (physician assistant) to the hematologist that I had an appointment with comes in and is very cheerful and says, “Do you know we’re doing a bone marrow biopsy today?

I was like, “What? What is that? I’m going in there for a rule out. I don’t even know what that word means.” Then this young girl comes in and tells me that we’re doing a bone marrow biopsy. She explained it to me, and I literally started crying.

What in the world is going on here? Then the doctor came in (the hematologist), and I’m crying, and she’s trying to talk me down. I said, “Look, you guys didn’t tell me that this is what’s happening. I could have mentally prepared for this. I could have brought my friend. I am not doing this today.”

How did the bone marrow biopsy feel?

For me, the gravity was maybe more extreme than most people.

I watched my mom die of cancer. She died when I was 19 years old. When I was in that room, I didn’t think I had cancer. I thought I was going to a hematologist for a rule out.

I’m sitting there crying and upset, thinking, “Is this person thinking that I have cancer? Now I have cancer?” This hematologist is saying, “This isn’t that.” That was what she kept repeating. “What your mom went through — this isn’t that.”

They hadn’t diagnosed me, and it was supposed to be a rule out. I don’t think at that point anybody thought I had cancer, and that’s what I found along the way.

It was like, “I’m sure you’re fine. Don’t worry about it for like 5 or 6 months.” But actually, there was something very big to worry about.

For me, the emotion that was coming from there was, “I’ve seen people battle cancer. I’ve seen people die from cancer.” My mom wasn’t the only family member that succumbed to the disease. I have many aunts and uncles that have passed away from cancer.

I was very close to my mom. I was young and in high school during all of her treatments, witnessing all that. That was in the 90s. A lot has changed between now and then. I have to say, it was probably a lot worse to have cancer in the 90s than it is in the 2020s, based on what I witnessed when I was a younger person.

At that moment, the tears and the emotion that were happening in that room were like, “I’m in a hematologist office with this person who thinks I have cancer because they want to do a bone marrow biopsy. Here begins the torture.”

I had always said after witnessing my mom go through all that that I would never do chemotherapy. After I saw that, I said, “I’m never doing that.”

I haven’t done traditional chemotherapy, and it was a big part of my decision-making. To avoid it was probably historical.

My mom battled breast cancer for a long time. She had the initial cancer reoccurrence twice. Then I think she was battling it for that third time, but it had spread to her sternum. Then, from there, it went up to her brain. That’s ultimately how she went from cancer.

Guidance on people on PET-CT scan

They had basically said, “Okay. When can you come back?” I said I’ll come back in one week, and they said, “Okay, well, we also want you to get a PET-CT.”

I don’t know anything about a PET-CT. I don’t know what it is. Nobody tells me. I go, and I’m by myself.

There’s a nurse, and he’s very nice. I’m asking a lot of questions. He’s got to put an IV in me. I’ve never had an IV before in my entire life. He was asking me if I’ve ever had this done before, and I said no. Then he starts explaining what he’s going to inject in me. I said, “Is this dangerous? This sounds dangerous. Is this bad for my health?” It’s not something you should do. It is radiation and radioactive material.

He said, “If your doctor has ordered the test, then it’s probably really important that you do it.”

I said, “Okay, that makes sense.” But I had no idea what was going into it.

There was a lot of that — the first time going to the doctor’s office, going to the infusion center, getting a PET scan and getting a bone marrow biopsy. It’s really scary that first time. The buildings look so different the first time I go from the second time I go.

The first time I go, I just have this scary memory of them. Then as I go back over and over again, it fades, and they seem like normal places to me. But I can always remember the first time I go to a building and get that first thing I’ve never done before. It’s just like a very sterile, scary kind of situation, but it seems to fade away after you do it the first time.

Describe the PET-CT scan

They set the IV and inject you with something that I still don’t 100% understand.

I’ve asked a lot of questions about it, but it’s like I get a piece of paper here in New York City that I have to carry around with me because they have monitors in the subways looking for dirty bombs, like radiation bombs. If you get a PET-CT, there’s a chance you can set one of those off, so I get a piece of paper walking around New York City.

They tell you don’t hug children for the first few hours when you’re done with it and drink a ton of water. You sit there for an hour in an isolated room. From the looks of it, the room is meant to keep whatever you’re radiating from your body from other people.

It’s a very lonely hour. You’re not allowed to bring a friend because you’re emitting something. When they’re guiding you in, they almost put some space in between them and you. Nobody’s getting close to you during that process and for a little bit after. Then, after the hour, they call you in.

They also will have you drink a substance while you’re waiting. I can’t remember what it is exactly. It starts with a G, but it’s basically sugar water.

It’s a very lonely hour. You’re not allowed to bring a friend because you’re emitting something. When they’re guiding you in, they almost put some space in between them and you.

You’re getting the injection of something going into your veins that helps them see imaging of your organs and lymph nodes. Then you’re drinking something that’s probably insulin or glucose-type base that’s going throughout your whole body. That’s sort of the magic for making the imaging.

You do that for an hour. You sit there, get an injected, drink all the juice. Then they bring you in, and you go lay down on a long, little table. Then they send you through a tube.

For me, because I’m stage 4, my lymph nodes are from my groin to neck. My scan probably takes longer than most people’s, depending on the type of cancer you have. For me, they start on my thighs, and then they go up to my ears. It probably takes about 28 minutes to do that scan.

You just sit there and don’t move for 28 minutes. Then they let you go with your piece of paper to get out of jail if you set off a New York City MTA radiation monitor.

Dealing with scanxiety

It’s not just about scans. It’s just that waiting period, essentially for any results or even before the procedure.

I’m not a fan of bone marrow biopsies. I don’t like them, and I will definitely be kicking and screaming if I have ever to do another one. We’ll need to work on some other ways of either medicating me more or making the experience better for me, because I don’t know if people know exactly what it is.

Still, they’re essentially taking a very long needle and jamming it into your lower back and going straight into the bone to the core of it and removing some marrow. At the same time, going back in where they went in and taking what’s called an aspiration, which is a small amount or a tiny piece of the bone as well. Sometimes they’ll even get marrow from 2 different spots.

I can’t imagine anybody would want to do that. I don’t like the experience at all. I’ve done 2 of them. I’ve done the Ativan (lorazepam) stuff. It wasn’t enough for me.

I always say I’m done collecting bad memories of bone marrow biopsies. If they want to do another one, we’re going to have to work something out. I don’t want to do it under the circumstances I’ve done the last 2.

I had a long wait to get into actually meeting my oncologists who I have now.

The hematologist who did the bone marrow biopsy — the first one who was doing the rule out with the PET scan — had sent my bone marrow out to the lab to see what it was. Before it went out, she said she took a smear of it, put it on a slide and looked at it under a microscope.

She said, “I can tell for sure you have B-cell cancer just by looking at it. I’m a myeloma doctor. I’m referring you to the Lymphoma Center. The bone marrow from the biopsy is being sent out to the lab. Your PET scans are still going through, but you need to call the Lymphoma Center. I referred you to somebody because I don’t do that. I do myeloma.”

Hearing and processing the news of cancer

It was literally on the phone with a doctor. I didn’t have a relationship with the same one who said, “This isn’t that.” It was a hematologist that I was sent to do a rule out.

It all happened very fast, and it was very shocking. I had no idea, and I would have never guessed that I had cancer.

It was hard doing the rule out. I thought I had to do all these horrible things just to appease the rule out. I was still in the belief that all these other doctors telling me, “Look, your blood work’s perfect. I’m sure you’re fine.” I had so many doctors tell me that, from the dermatologist to the immunologist allergist, my primary care.

So many people were like, “I’m sure it’s probably just something immune, autoimmune.” In my mind, I just think, “Oh my God, I have to do these 2 horrible tests to help figure this out, but I do not think I have cancer.” That wasn’t what I was thinking at all.

When she said it, it couldn’t have been more of a shock. I was completely in shock. There wasn’t a lot of conversation. After that, it was just 1 or 2 questions. Her responses were like, “I’m not a lymphoma doctor. You have to call the Lymphoma Center.”

I got information that I had cancer, but then I didn’t really have anybody to ask follow-up questions. There’s a lot of B-cell cancers. 

My friend who was a doctor, I called him. He’s such a great friend. He came over immediately within an hour, and we were able to talk, like, “Well, there’s some ones that aren’t that bad.”

We were going through the list. He was trying to talk me down a little bit. When I called the Lymphoma Center, they said, “We’re not seeing you until you have a lymph node removed. We’re going to need one in order to diagnose this formally.”

That period was 4.5 to 5 weeks from, “You have cancer,” to “What is this?” I had to find a surgeon, schedule an appointment with a surgeon to meet before surgery, then schedule a surgery. Then it goes out to a lab. They couldn’t have told me more times, “It literally takes a week. It takes 5 full days. It’s not going to come back any sooner. We assure you, 5 days is the earliest.” Then from there, then I have to get an appointment with the doctor to get the results.

It was a good 4.5 to 5 weeks of just complete anxiety. Those were definitely the worst weeks. The not knowing what my outlook is, what my prognosis is, what is going to happen in terms of treatment. Those were the worst.

The terrible part of it was the anxiety part that you sort of hinted at it when you’re waiting to get the scan results. That’s what made it so terrible.

The meeting with the surgeon and the appointments — all of that wasn’t a bad experience. I felt like I navigated it as fast as I could within the system. You call to make a prelim appointment with a surgeon on a Monday, and you get in on the next available — might be Thursday. You meet Thursday.

Then you got to get on the surgery calendar, which could be 1 day or 2 days a week because they’re meeting with so many people for pre-op and post-op. The surgeon just might schedule surgeries 1 day a week or 2 days max.

I understand the idea of just checking to the emergency room, but how much faster could it have been? I don’t know if that would set it up for me.

Describe the moment you got the results

The worst day was getting a phone call from the hematologist saying, “You have some B-cell cancer. I don’t know what it is.”

That was the worst day. I was crying and thinking, ‘This is it.’

Going in to get the formal diagnosis and meeting my doctor for the first time was a very long visit. I brought 2 friends with me. One of them was the doctor, which I’m very grateful for. We were there for a good 3 hours, and I had a ton of questions, collected over the 3 or 4 weeks that I was waiting.

My doctor, who’s at Weill Cornell, Dr. (Jia) Ruan said, “You have mantle cell lymphoma.” She explained it, and I immediately felt very lucky because the hematologist had referred me to the Lymphoma Center at Weill Cornell, and there’s a handful of doctors there.

The one that I just randomly ended up being assigned to happens to be the one specializing in mantle cell lymphoma. That was like a miracle in a way, because of the options there. I didn’t really pick. They just referred me to somebody. I just accepted the referral. That seemed magical. I got the exact right doctor that I should be seeing.

VIDEO: Treatment & Clinical Trial Experience

Jason used to be afraid of needles and procedures. Watching his mom go through breast cancer treatment through chemo, he was determined to try a different course of treatment.

Luckily, Jason got into a clinical trial introduced to him by his oncologist that turned out to be effective for him.

Treatment decision

My doctor said the traditional path to treat mantle cell lymphoma would include R-CHOP chemotherapy and then, depending on the result, could potentially be followed with a stem cell transplant. She said that she had another option for me, which was a clinical trial that she happened to be heading up for mantle cell lymphoma.

This felt very magical to me. I landed with this doctor who specializes in it, and now she’s also heading up a Phase 2 clinical trial.

She had presented both options. I knew instantly I wasn’t going to do the R-CHOP chemotherapy, because I told you I wasn’t going to do what I saw my mom did at that moment.

My friend who was a doctor was there with me. We asked a lot of questions. He asked a lot of questions as well about the clinical trial. She left the room, and I turned to him and said, “What do you think?” I just wanted his opinion. But in my mind, I already knew I was not doing that R-CHOP stuff.

He said, “I think you should do the traditional route. There’s just more data. They’ve been using it more. We know it works.”

I said, “I think I’m going to go the other way.”

She came back in, and I asked a lot more questions. They presented me with a stack of papers, like a contract. I read through it all.

I sat there for like another hour, just contemplating which one to do. Then before I left, I signed all the paperwork for the clinical trial. She said, “All right, come back in a week from today, and you start.”

So that’s how I started.

Describe the cycles

For the first 4 weeks, you get Rituxan every week, and then after those first 4 weeks, you will get it every 56 days after that. The other 2 medications are both oral, but the Rituxan is infused. You go to the hospital, to an infusion center, and do that.

The first 4 weeks were back to back, 4 weeks in a row. Ever since then, I just go in every 56 days. I take acalabrutinib every morning and every night, every single day, and I have for over 2 years now.

For the lenalidomide, I take it like birth control. 21 days on, 7 days rest. I’ve been doing that for over 2 years now as well. The first year, I took 20 milligrams of lenalidomide, and then for the second year, they let me reduce the dose to 15 milligrams. Basically a 25% reduction of that drug to give a little break and hopefully reduce the side effects by 25%.

Describe the difference in side effects

It’s so hard to measure them. But I do remember that the first year was way harder.

I remember in the beginning — the first 6 months — were way harder, and I don’t know if that’s you just get used to it, or your body gets used to it, or you adapt. I do remember that the side effects were worse in the beginning, and maybe it has to do with just managing it better now.

I can tell you that acalabrutinib causes headaches for me personally. It just straight up causes headaches. They resolve from caffeine; if you get a headache and drink a coffee or take an Excedrin that has caffeine in it, it’s pretty quick. It goes away.

Dr. Ron, who’s been at Phase 2 clinical trial, it was her tip on that, and it worked. If I ever got a headache, sometimes I’d wake up in the morning and just be like, “Oh, my head is killing me.” One cup of coffee, and it would start to fizzle out.

Luckily, I like coffee. I drink black coffee every morning.  If I didn’t drink coffee and had to take Excedrin every day, I might feel differently about that.

How long would the coffee last in terms of helping?

I was a 3-cups-of-coffee drinker every morning to begin with before all of this. The headache is every day, but it subsides every single day from caffeine. Normally, if I wake up in the morning with the headache and drink, it goes away.

I normally don’t get a headache, maybe not get one for the rest of the day. If I get one in the afternoon or evening, I can pop an Excedrin; it’s not every day that you get a second round of headaches. It seems like waking up with a headache, as was my experience.

Any other side effects that were really tough?

It’s hard to tell which ones are doing which ones, so these are just my opinions.

I really think Excalibur is causing the headaches. Then with lenalidomide, I feel like it causes a ton of fatigue.

The pills are causing all my fatigue. That’s my number 1 side effect. That’s my biggest problem. It’s like tired, but fatigued isn’t tired, and I want to say weak, and fatigue isn’t weak. It’s like putting those 2 in a blender, and it’s something else let a little light that hits me pretty hard.

If I go to work and I’m moderately active throughout the day, I’ll come home, and that’s it for the day. I’ll be on YouTube in bed for the rest of the evening.

Fatigue is the biggest side effect of lenalidomide.

What does a normal day and fatigue look like?

Even when I was having symptoms with those hives, I was out to dinner. I was meeting friends.

I don’t do that anymore. If I do a workday, that’s it for me. I don’t have anything after work. There is nothing left for me to give.

I had a doctor’s appointment at 2 o’clock yesterday, and the thought of having to get up and go into Manhattan and come back, the level of exhaustion is just like, “I don’t want to do that.”

For people who’ve never been on treatment or cancer or if you’ve ever been so tired where you don’t want to take public transportation, and you just pay for that car, that lift — that’s fatigue.

I can’t deal with getting on a train right now. I can’t deal with getting on a bus right now. I’m so lethargic. I’m paying for a Lyft or an Uber. Maybe that’s a New York City analogy, but that’s how I feel about a lot of things.

Like walking the dog. I just don’t want to do it. I used to play tennis. I used to go meet up with friends all the time after work. I don’t meet up with anybody after work. I don’t play tennis anymore.

The amount of hours I have to dedicate to the day is a lot less. I’m not what I used to be during those hours.

What helped you through the fatigue?

I’m still working on it. I met with an integrative health doctor yesterday. We talked, and the soup of the day was fatigue.

This doctor is at Weill Cornell, a real doctor, a board-certified doctor. We were talking about solutions for it, and one of the things we talked about was potentially doing some weight training and some cardio, even though that sounds totally counterproductive and the exact opposite of what you would want to do if you’re so tired.

We talked about strengthening, building muscle mass and strengthening the heart to potentially alleviate the fatigue a little bit or improve my quality of life. It’s a long process. We talked about starting really small and building up to maybe 150 minutes a week combination, maybe like 5 days a week. Then maybe year 2, punching up to 300 minutes, but in very small increments.

That may be a solution. I’m going to try, but it’s not like, “Boom, that’s fixed.” It’s going to be a path and a journey. I have to do the work to have a little bit better quality of life hopefully. Because for me, my protocol is I’m going to keep doing this therapy for as long as it continues to manage my disease or until I can’t handle it anymore.

Investing in this idea may be worthwhile for me, considering I’m going to keep taking these medications.

What’s the follow-up procedure for monitoring MCL?

I’m incredibly fortunate because the clinical trial was trying to get FDA approval, and there are people that are analyzing data, and there’s research.

I received MRD tests regularly during the clinical trial for the formal 2 years. I got one before I even started and then at different intervals throughout the trial.

From what I understand, even though they aren’t FDA approved for mantle cell lymphoma, the researchers can identify if there are any cancer cells in my blood down to 1 in 2 million or something like that. From what I understand, it’s a very sophisticated science and test.

We know from my last test 3 months ago that there’s still a minimum amount of cancer cells in my blood. But if I wasn’t getting the MRD test and I was just getting R-CHOP or whatever and not on this clinical trial, they’ll just send me to get a PET scan, and they would tell me that I’m in remission. That’s what my doctor said.

She goes, “I can’t say that to you because I have this other test over here that tells me the truth, in a way.” She said, “Let’s call it metabolic remission.”

All of my lymph nodes are now the same. They’ve shrunk down to a size that fits into the normal zone. None of them are like lighting up like a Christmas tree as they used to. From a PET scan point of view, I look good. But from the MRD test, we know that it’s still present.

Again, they use the word “minute.” There’s a very small amount. At the second anniversary, which was last month, they pulled blood for another MRD test. I don’t have those results back because in a clinical trial, they do it in batches. I’m in a batch of a pod of people.

Those results get released once the whole pod completes and finishes. I’m hoping that when that result comes back, I don’t know if it can be better than minute, but I would love to hear complete remission, which would mean there’s nothing.

But again, my doctor says, “Don’t get hung up on the name of complete remission because there really isn’t a cure for mantle cell lymphoma.”

I believe there are some doctors who think they’ve cured some people, but they’ll say, “I don’t know,” until they get another 20 or 30 years down the road and die of something else.

I think it was in the 90s that it was even really discovered. For the first decade and a half, they didn’t even know what to do with it. They didn’t have treatments and therapies that were specific for mantle cell lymphoma. They were just giving what they were giving to another disease until they did their research.

It’s new in terms of medical error. It’s a newer cancer that they’re trying to understand and treat.

How is MRD different?

I go in every 28 days for standard blood work because all these pills drop my white blood cell count. Before they give me the next bottle, I have to be at a certain level, or no meds for you. When they do the research tubes, when they’re already taking my blood, there’ll be another pouch with 2 vials that are basically in a special bag. Then those two vials get sent to another specialty lab on them, and it goes to an outside lab outside of my hospital.

That is where the clinical trial is crunching the numbers or whatever they do.

Describe the clinical trial process

It was like a stack of papers this thick, and you’re supposed to sit there and read through the whole thing. It seems like a contract. If you die of a heart attack, you can’t sue us. There’s a lot of stuff like that — 8 pages of potential side effects. “If these happened, sorry, we’re not responsible.”

They outline a lot of the financial things, like your insurance is still going to be billed for Rituxan because that’s standard care. You’d be getting that anyway. It seems very legal.

»MORE: Learn more about the process of clinical trials from one program director

Was there any insurance issue?

No, there weren’t any issues in terms of my insurance with a clinical trial. The way the clinical trial was set up is like they knew what was standard care and what wasn’t.

They know MRD tests and standard care, so they’re footing the bill for that. They know rituximab is standard care, so they tell them, “Bill that through the insurance.”

Anything that was going to be provided for me anyways is getting billed through the insurance. Anything that is above and beyond is being paid for by the clinical trial.

Also, I had a lot of questions about what happens after: “Are you going to kick me to the curb?” I was told no. If this works for me and I complete the 2-year clinical trial, they will continue to give me the medications as long as it’s working for me and my doctor. We, together, decide that.

I finished the clinical trial formally 2 years, and my doctor and I decided together to keep going. The clinical trial has continued to give me these 2 medications, and they’re not billing it through my insurance.

They’re the same process as to how I was getting them before. Because they’re not FDA approved, they come from a specialty pharmacy, especially lenalidomide coming to a mantle cell patient. It comes from a research pharmacy.

They call me, and I have to answer a whole bunch of survey questions. Then I get transferred to somebody else, and I get all these yes and no questions because lenalidomide causes birth defects.

There’s like, “Have you had sex with a female who may become pregnant? Yes or no?” It’s a lot of surveys like that.

You will have to complete a survey every 28 days. They will say your next survey is available on this date. That’s kind of the process, and then you get a shipping confirmation from the pharmacy. They’ll say, “We’ve shipped your pills to your doctor. You will get them on your next visit.” That’s how one comes.

Then the other one, I think, just comes from the pharmacy internally. But it’s grants from the clinical team for these pills to get there. They’re continuing to pay for them for me to continue on, which I appreciate, but they’re also going to be getting more data and more information.

I think they’re just as excited that I’m continuing as I am as excited to continue, which is great. This is the ultimate perfect match, right? It’s working for you, and it’s also information for them that will hopefully help future patients down the road.

They call me. The doctor calls in the prescriptions, the specialty pharmacy, and then calls me. They do a security check to ensure it’s me. They ask a whole bunch of standard questions. They say, “OK, great, we’re going to ship.”

You need to complete your monthly survey, and then I get transferred somewhere else and have to do yes/no questions. Have you donated blood? Have you donated sperm? All of these. I believe it’s because of something to do with the FDA.

I take the survey, and then I show up at the hospital. They take my blood. They send it to a lab right down the hall, and I sit there for about 45 minutes waiting for the results to come back. Then if the white blood cell count and the new drill fill or something like that is good, then they hand me the pills. But I don’t get to leave until I get the blood work back.

What happens when your counts are not good?

I’ve never not gotten my pills. They’ve always been like, “Your counts are good.” I haven’t had that bad news yet, which I feel really fortunate about. My white blood cell count just sits out of 3 like right across the board, like a piece of paper. It’s low, but it’s still right at the bottom of the acceptable mark, but it just stays there.

I don’t know anybody else, any other clinical trials, or any other place where mantle cell patients are receiving lenalidomide, at least not in the U.S. I don’t know. I think this clinical trial is the first to combine lenalidomide and acalabrutinib.

Those of us in the clinical trial are like the guinea pigs for that combination for mantle cell lymphoma. What happens to us is kind of what they’re looking for. Hopefully, nothing bad. I’ve been here for 2 years doing it, and I’m still here.

What’s your response compared to the typical response on the traditional route?

I’ve never asked, “How do I compare to that?” She’s never brought it up to me, but she’s been very excited about the response in general. Like everybody seeing a response, we have people in complete remission on the clinical trial.

“I’m very excited that you responded, and at the level that you responded, I think we should be happy.” She seems to be thrilled with just in general, how everybody’s doing.

I think everybody got a response. There wasn’t one person that it just didn’t work for. I think that there’s some excitement around that. For me, I’m glad I didn’t do the R-CHOP, and I don’t know what’s next for me.

It’s one of these games of chess with mantle cell lymphoma. I’m going to keep doing this for as long as I can do it and manage the disease. Then, we probably all assume at some point this is going to relapse and come back, and then I’ll need to try another therapy.

I think, if that’s the case, I will hold out to do a traditional type of chemotherapy that would be like going into a stem cell transplant or CAR T-cell therapy or something like that.

It’s one of these games of chess with mantle cell lymphoma. I’m going to keep doing this for as long as I can do it and manage the disease.

But to do straight-up R-CHOP or chemo as a treatment is not appealing to me unless we’re going for a home run on this.

We’re going for the stem cell transplant. We’re going to do CAR T-cell therapy.

I’m in a lot of cancer support groups. There’s anxiety between the chemotherapy and going off and scanning again in 3 months and seeing every 6 months. That sounds anxiety-driven.

I love the fact that I go to see the doctor every 28 days and this treatment continues. I feel like I’m doing something by taking the pills every day. When you talk about managing the disease, I feel like a management thing is happening here. If I just did R-CHOP, we feel like, “Let’s whack it. Now you go over here, and we’ll see how long that lasts.”

This process feels a little bit more like we’re staying on top of it.

Long-term care and attention

I know most lymphoma patients are getting PET-CTs, if they’re lucky, every 3 or 6 months. I’ve been getting MRD tests every 3 months. They’re giving me another one in 4 months. Then they said, “If you stay after that, every 6 months,” so twice a year for free for being in a clinical trial. I’m going to have information that they shouldn’t be getting.

MRDs aren’t approved for mantle cell lymphoma, but there’s no insurance company in the world that’s going to just start doling out MRD tests for mantle cell patients.

This feels like I’m really being watched and managed at a level way beyond what is even futuristic. It’s beyond what is even possible if I wasn’t in a clinical trial.

What do you have to do every day?

I can show you one. I have one right here. It basically just says study drug diary. You have to log the date, time and the number of pills you take every single day.

I’m taking acalabrutinib every morning and every night, and then I’m taking lenalidomide, 3 pills every day. Then I take it for 21 days and then 7 days off. Even the diary will remind me, “Do not take on those days.”

It’s very important that I bring all the pill bottles back. They have a freak-out if you don’t. They’ll have to write a report if you lost the bottle or something. In one instance, they know that my cycle is 28 days, so I should have 4 pills left or something like that. They’re opening it up, making sure that there are 4 pills in there that I bring back.

If it isn’t there, they’ll ask, “Where are they? Did you miss any doses?” Randomly, every other time or every 3 months, they’ll give me a whole bunch of questionnaires.

The questions are like on a scale from 1 to 5 — do you feel close to your family, etc. Then you meet with a clinical trial nurse every time, and you report every single symptom that happened during the 28 days and make notes next to the date, like, “I had diarrhea on that day. I had a really bad headache. I had chemo brain on that day or whatever.” Whatever side effect you had.

»MORE: Read more on FDA approvals of clinical trials

Every 28 days, you turn over all the side effects of what you did. That’s pretty much it for paperwork. It’s the drug diary. 

I thought there were 28 people all starting at the same time, and I thought that I got into the second-to-the-last spot, but it turned out I got the second-to-last spot of Pod 2. I guess when I started 2 years ago, they only started 12 people for the first year.

We were like the guinea pigs, and then after about 11 months, they started more pods. But the goal is 28 people roughly for this clinical trial.

I believe there is now a waiting list. It’s sort of caught attention, and there are people that want to join. I’ve heard that there’s even a hospital in Florida that is asking to potentially start offering the clinical trial at their hospital and then enrolling more people.

I think eventually, as it goes down the road, maybe they’ll enroll even more people in Phase 3, like 100 or 200 people across the country. But right now, it’s just at Cornell in New York City.

VIDEO: Life After Cancer (Quality of Life)

For more than 2 years now, Jason diligently writes in his clinical trial journal every single day. Staying on his course of treatment outside of the formal trial gives him hope of full remission from mantle cell lymphoma.

Jason’s story is also an inspiring example of patient self-advocacy — making informed decisions for a better quality of life.

What has been the impact to your life?

I’m really grateful that I have this option. It’s been 2 years, and it feels like it was the right decision for me. Maybe it was not a good idea to make decisions based on those emotions, but it turned out this was the best choice for me. Those were things I probably should have worked through with a therapist, or whatever, those feelings and emotions about cancer treatment.

Regardless, I can look back now and say I still made the right choice. This was the right choice for me. I was the type of person before, like I said, when I went to that PET scan, that was the first time I got an IV. I didn’t really like needles. I was like the person who’s closing their eyes when you get a flu shot.

I’m such a different person now. I can literally watch them put an IV in now.

I’m really grateful that I have this option. It’s been 2 years, and it feels like it was the right decision for me. Maybe it was not a good idea to make decisions based on those emotions, but it turned out this was the best choice for me.

I’ve had so many IVs. I’ve given so much blood, even to the point where I shock myself. I will volunteer to give my blood for things, and I’m the type of person before who would be scared to get a flu shot.

I’ve surprised myself with my self-evolution with all of this stuff. I really didn’t like doctors and going to the hospitals. I just had a lot of bad memories. I’ve been to an infusion center with my mom in the 90s. I’ve shocked myself with what I was willing to do.

When I get Rituxan infusions, I feel really good about it. Even though I’m in an infusion center, I’m like, “This is a good drug; this is helping me.” So I feel really good about that.

I’ve surprised myself with my self-evolution with all of this stuff. I really didn’t like doctors and going to the hospitals. I just had a lot of bad memories.

Dealing with the logistics of follow-up treatment

There’s pros and cons in both.

For the first 4 weeks, I was there every week, and then I went back every 28 days for the blood work, to meet with the clinical trial nurse, to get the medication and then every other business.

With the clinical trial, it’s very rigid. I know my schedule a year out. I know every 28 days on a Wednesday, I have to be there.

During the clinical trial, you can’t really say, “Oh, I’m going to Hawaii. Can we push this a week?” It’s normally a no. There’s a little bit of grace, like 1 or 2 days, maybe here and there and make a special exception. But then it changes the whole schedule. If you change 2 days, then your whole year changes. It’s that serious.

There’s pros and cons, I guess, to everything. I see what you were saying, but with a clinical trial, there’s just a lot of accountability and many appointments. It’s not like I go to Walgreens and get these pills. They’re just not approved for the frontline treatment. I have to pass all these tests to get them. I have to fill out paperwork, turn in diaries.

There’s pros and cons, I guess, to everything. I see what you were saying, but with a clinical trial, there’s just a lot of accountability and many appointments.

Do you have any guidance for MCL patients?

I wish I did have good guidance, because I’m in support groups.

In support groups, I’ve heard horror stories, especially of Phase 1 clinical trials. I feel very fortunate and grateful, and maybe I got some dumb luck, hopefully, getting into this clinical trial because it seems to be working. It seems I can only speak to mantle cell lymphoma because that’s what I have, and that’s what I’ve been researching, and that’s what I’m doing.

Mantle cell lymphoma is a newer cancer, historically speaking, and they’re just in the past 10 years starting to create individual therapies designed just for mantle cell. It doesn’t really get a lot of attention because it is the rarest of all the B-cell cancers. It’s the least amount of diagnoses per year when you’re talking non-Hodgkin’s B-cell lymphoma.

I think clinical trials may be worthwhile looking at if you have mantle cell, because that’s where a lot of new stuff is happening. For a long time, you were just getting a lot of the old stuff or repurposed stuff. It almost felt like you were like the youngest child and getting all the used [stuff] — just give them what we gave all the other B-cell cancers.

I think it might be worthwhile if you have mantle cell lymphoma and you’re looking around and trying to figure out your options. Right now, if I was diagnosed, I’d be seeing if I could get into a CAR T-cell therapy clinical trial for mantle cell.

I listen to a lot of cancer care calls and listen to a lot of doctors talk about the stuff that’s happening with that. It just seems like there’s a lot of new modern therapies that are actually being created or tested and designed for mantle cell. They’re not FDA approved.

The only way you’re going to get a shot at getting them is a clinical trial. Do your research, do your due diligence, and follow your intuition.

I feel like I got really lucky. That helped. I showed up at the right place at the right time. That’s just luck, like I go to Las Vegas and I hit the button on the slot machine. That’s just luck, but luck happens. Then the rest of it is just doing research and following your intuition and making an informed decision.

Do your research, do your due diligence, and follow your intuition.

Guidance on PET scans and insurance

I ask a lot of questions, and I’ve learned a lot. I feel like the health care team around me tells me the truth.

I’ve learned that lymphoma patients are not getting an MRD test like I am. You should be getting PET-CTs for lymphoma patients. If anybody doesn’t say it’s a PET-CT, I think that they’re lying because I’ve asked everybody.

If you have lymphoma, PET-CT is really what we want, but insurance companies don’t pay for those for everybody. I’ve heard Medicare gives you 3 or entire life period, full stop. A lot of the rules are designed around cancer patients having one PET-CT per year.

Still, it’s just like this across the board. It would be really great if we could get some advocacy, maybe from LSS or somebody to really advocate for lymphoma patients in particular, that they should be entitled to PET-CT scans.

It may not be as important if you have breast cancer, as my mom had, or some other type of cancer, but it is for cancer that affects the lymphatic system and the lymph nodes. It shouldn’t be a fight for lymphoma patients to get the appropriate tests, which is a PET-CT.

I understand why the insurance companies do it, but I think there should be some advocacy just for that particular thing, which is something that I learned on this journey that lymphoma patients should get PET-CTs.

Advocating for yourself

I made a mistake with my insurance company when I left. My primary care was at Weill Cornell. And when I was looking for the specialist, I went into my insurance book and found somebody who took my insurance that was in the area. That was a mistake because I didn’t ask the right questions.

I learned later that she wasn’t board certified, and I learned how important that is. I learned that all the Weill Cornell doctors have to be board certified or lose their job. That’s great. When I leave there, I’m always asking now, “Are you board certified? Are you up to date?”

The last time they were board certified in oncology was 1997. That’s what you’re getting. I really think I had a bad experience there because I picked a doctor who didn’t continue education and wasn’t board certified. I don’t think she liked me much either.

The other day, I think she thought I was a little bit mental because I ask a lot of questions, which some doctors don’t like. She went as far as to try and prescribe me mental health medication during the diagnosis period because she thought I had anxiety that wasn’t in line with reality.

Then 4 or 5 weeks later, I was diagnosed with cancer. She was way wrong. She did call me on the phone when she heard. I give her credit for calling, but the message that she delivered was a little bit defensive. I think she felt bad that she was so way off, but I think she was way off because she just wasn’t a good doctor. I don’t think she was a good doctor for trying to push me into mental health medications and be dismissive of my symptoms.

Message to others going through cancer

I doubt there’s a mantle cell support group. There are like 2,000 cases a year. I’d be shocked to see that.

The closest I found is blood cancer support groups in general, but big shout out to support groups. It’s really great because here’s the reality. In the beginning, with a blood cancer like mine, at a minimum it’s going to be like 5 years.

If I did nothing, I’d probably die in 5 years. Chances are I’m going to have to do multiple therapies. It’s going to be an ongoing process. It’s going to get dragged out for probably, let’s say, a decade, hopefully way more. That’s a long time of your friends and family not wanting to hear about what you’re going through.

My friends and family were kind of concerned for the first 4 months or whatever, and they would check in or whatever. Right around the 6-month mark, everybody’s like, “OK. He’s not dying tomorrow or next week or next month.” The support groups are great places where you can hold, just be there and listen to other people, and also you can be heard yourself.

My family or my friends never had a bone marrow biopsy. They’ve never had a PET-CT. You’re talking to the wrong people, so support groups are a great outlet — and especially if you have blood cancer, typically the journey’s longer.

If you find a regular group that meets every single Monday or whatever it’s going to be, it’s like you are seeing the same people over and over again. I think that’s something great about support groups.

The one that I started in person pre-COVID (and now it’s on Zoom), it’s the same people that have been there, for the most part, for 2.5 years now. You kind of see people go up and down, and that’s also helpful to you.

You can also bounce things off other people. We talk a lot about doctors and second opinions and managing. We were just talking about that other doctor.

I’ve seen people in my support group dump their oncologists and pick another one just because they’re in the support group talking about it and everybody saying, “I can’t believe they talk to you that way. You need to get rid of that person.” It’s like you go to school. Not all teachers are the same, and not all doctors are the same. There’s like 6.5 billion, 7 billion people in the world, and we’re not all going to get along.

Sometimes a support group will help you figure out where you need to be or where you need to go and get you information.

The other thing I do is yoga. I do gentle yoga once or twice a week. I used to do pilates before that. It’s not serious activity. I’m not running or doing all this cardio, but it’s a nice reset outlet if you can find access to it.

Just have 1 or 2 things a week that you can do, and it doesn’t even have to be yoga. It can just be like a massage. If you can come up with a couple of things that you like to do each week and have that on your calendar.

I always try to have something fun to do to look forward to, whether it’s a weekend getaway or planning something with a friend. I feel like my work really has given me purpose and reason to live.

»MORE: Read other patient experiences on yoga and meditation

Prior to starting a company, I was a freelancer working for other people, representing other companies. Now, luckily, I have my own business, and I’m an entrepreneur having a passion for something. For me, it’s my business; for you, it could be anything.

Having that passion for my business and my company really gives me a reason to live. It’s like there are employees there. We have wonderful customers. We’re building something. We’re growing something. Having something to do that you’re passionate about is ultimately the most important.

Inspired by Jason's story?

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Mantle Cell Lymphoma Stories

Tim H., Mantle Cell Lymphoma (MCL), Stage 3/2

1st Symptoms: Lump on left-side of neck that grew bigger over a couple years, new lump on right side
Treatment: 6 cycles Nordic chemo protocol, alternating cycles of R-CHOP and rituximab + high-dose cytarabine, autologous stem cell transplant

Sheryl B., Mantle Cell Lymphoma (MCL), Stage 4

1st Symptoms: (Over 15 years) Skin irritation from temperature changes, rising WBC levels, unexplained fatigue, retinal hemorrhage, hardened abdomen (from enlarged spleen)
Treatment: 6 cycles Hyper-CVAD chemotherapy

Shari B., Mantle Cell Lymphoma (MCL), Stage 4

1st Symptoms: None, lymphoma discovered at unrelated doctor appointment
Treatment: 6 cycles R-CHOP, 5 cycles Phase 3 trial of Velcade + Rituxan (normally for multiple myeloma), allogeneic bone marrow transplant (BMT)

Bobby J., Mantle Cell Lymphoma (MCL), Stage 4

1st Symptoms: Fatigue, enlarged lymph nodes
Treatment: Clinical trial of ibrutinib + rituximab, consolidated chemo of 4 cycles of Hyper-CVAD

Jason W., Mantle Cell Lymphoma (MCL), Stage 4

1st Symptoms: Hives, inflamed arms

Treatment: Calabrutinib, Lenalidomide, Rituxan

Stephanie R., Mantle Cell Lymphoma (MCL), Stage 4

1st Symptoms: Elevated white blood cell count

Treatment: 6 months of rituximab + ibrutinib, 4 cycles of hyper-CVAD chemotherapy

Cherylinn N., Mantle Cell Lymphoma (MCL), Stage 4

1st Symptoms: No symptoms

Treatment: R-CHOP chemotherapy, rituximab
Multiple Myeloma Relapsed/Refractory Tagrisso (osimertinib)

Connie’s Relapsed Refractory Multiple Myeloma Story

Connie’s Relapsed Refractory Multiple Myeloma Story

Connie is a self-described Wyoming cowgirl — not the rough type, but someone who balances it with gentle self-care. She’s happily married to her high school sweetheart, Greg. Together, they’ve raised 3 wonderful children.

In 2001, she survived thyroid cancer. In 2012, at age 46, she found herself with yet another diagnosis, this time, the rare blood cancer multiple myeloma.

In this video series, Connie shares her story of diagnosis, numerous treatments and clinical trials, relapse, and the side effects she endured. Connie’s journey is not yet over; it is a continuous quest for treatment while living life to the fullest with her family.

Explore her inspiring 3-part story series below. Thank you so much for sharing, Connie!

Connie timeline
  • Name: Connie H.
  • Diagnosis (DX)
    • Multiple Myeloma (Relapsed/Refractory)
  • 1st Diagnosis:
    • Age at DX: 46 years old
    • Symptoms
      • Chronic pain on ribs, shoulder and hips
      • Cough, bronchitis
  • Tests for DX: CT scan, Bone marrow biopsy
  • Treatment:
    • Stem Cell
    • IV Chemo (CyBorD)
    • Busulfan
    • Velcade + Revlimid (VR)
    • Cytoxan + Pomalyst
    • Darzalex
    • Bendamustine
    • Kyprolis
    • CAR T cell therapy
    • Blenrep
    • Isatuximab

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

VIDEO: Multiple Myeloma Diagnosis

About me

I sometimes think I have the identity in our small community as the lady with cancer, and I don’t like that. I’ve been married for 36 years to my high school sweetheart, Greg, and we have wonderful, amazing children. I’m proud to say that they’re all doing very successful careers right now.

I was raised on a ranch in Wyoming. I’m a Wyoming cowgirl, and yet I balance that with liking to be pampered a little bit with a pedicure and things like that. I’m not a totally rough-type cowgirl from a big family.

I was in pretty bad shape, but I had made excuses for it.

My first multiple myeloma symptoms

I had a lot of chronic pain, and I guess I didn’t think that anything serious was going on. one day maybe my right side would hurt, and then the next day the left side, and then maybe I would have a headache when I walked a lot.

I would get a pain in my shoulder, in the back. My chest was tender, and I had a cough. I actually went to the ER once with pain in my chest. I had slight bronchitis, so I ended up getting treated for that.

I had slipped on the ice, and so my hip hurting had been attributed to that. By the time I actually went to the doctor, I had 4 broken rib, a small hole in my sternum and lesions in my skull and spine.

I was in pretty bad shape, but I had made excuses for it. I just thought that I was a busy mom and that’s why I was so tired. I was actually working at a hospital, so once I did go to see a doctor, she actually said, “I’ve seen you limping down the halls.” She sent me immediately for a CT scan.

»MORE: What is multiple myeloma?

Multiple myeloma diagnosis

It did take a while because I was at a small community hospital, and I had thyroid cancer in 2001. Originally, they thought it was metastatic from thyroid cancer, which would have been actually worse. In some ways, I got the better of two evils when we found out it was multiple myeloma.

I went to a little larger facility and had a bone marrow biopsy. That’s when they determined that it was multiple myeloma.

It had been well over 11 years since my thyroid cancer, and I had really put cancer away on the top shelf. Maybe I should have thought all these aches and pains would have been cancer, but I never thought about cancer.

Thyroid cancer is so curable that I just was only having yearly checkups. It was just a big shock to find out that it was multiple myeloma. I was only 46 years old then.

Living life while undergoing treatment

I don’t think it was always a cloud. Cancers truly do make you think about how you should treasure every day. For the most part, I was trying to do that.

You don’t want to be down worrying all the time. Yet, any time a scan came up or whatever, then you got nervous and thought about it more.

First thing to do when you get a cancer diagnosis

Accept the support that people do want to help. Sometimes we just want to handle it all ourselves or try to be strong. I’m a people person, so I knew that I needed to be surrounded by friends and family. That really helped me get through.

I was always really honest with my kids. They weren’t little, though. My daughter was a freshman in high school, my oldest son graduated from law school, and my middle son was in college. They were old enough to understand, so I didn’t hold anything back. I think that that’s good because they can’t help you if they don’t know what’s truly going on.

Deciding on the course of next treatment

I always knew that Dr. Weber was going to do what was the very best for me — and the cutting edge, the newest treatment available that fit my type of multiple myeloma.

She would discuss that with extramedullary multiple myeloma that had gone to the tissue, you might have better results, for instance, with Revlimid than something else. We usually treated it pretty aggressively, though, but still keeping in mind that it was important to not damage your kidneys and monitor the white counts. I did have a lot of treatment choices, but she picked because she’s the expert.

Revlimid was almost the only treatment when I started. Besides it being really a harsh chemo, it just seemed like with every BiTE (bispecific T-cell engager), every 6 months, something new is coming out, and I was fortunate to get to try the new combinations.

They definitely took into account that I was young. But one thing that I had to get used to was that it was necessary for me to take pain meds on a regular basis. I didn’t really want to, but that was going to balance out and allow me to do what I needed to do and not live in pain.

What to expect with the stem cell transplant

A stem cell transplant is pretty hard to go through, but I just sort of looked at it as the normal suggestion, the standard of care pretty much all multiple myeloma patients are doing.

If someone else can do it, I can do it. I also knew that a lot of people were older than me going through multiple myeloma.

I always want to know everything about it. I would say ask your doctor lots of questions.

I could have had the stem cell in a smaller facility, but when we asked how many stem cells they did a year, they said about a dozen. Instead, I chose to go to MD Anderson that does 6 or 7 a day. I wanted where it was a common thing and where the nurses only worked in stem cells so that I would have really very top level of care. That was important to me.

I don’t really remember exactly what the schedule was for the pre-chemo, but I know that it was a really tough one. The only time I lost my hair was from that chemo treatment.

It definitely makes you very sick, and the goal is to get your white count down to zero so that then they can give you back your stem cells that hopefully aren’t corrupted with cancer anymore. You really have to be quite sick for them to bring you back and start getting healthy again.

I was in the hospital for almost a month. I got to be home for Christmas; we flew home on December 18th. I know that the doctors were a little bit hesitant to let me go, but they knew that it was going to do me really good to be home for Christmas. I spent Thanksgiving in the hospital and my husband Greg was with me, but our 3 kids were with their grandparents.

It was just really hard to even have a holiday away from my family.

»MORE: Read more about stem cell transplants

Chemo side effects

I had extreme nausea. I had nausea for a hundred days. I associated food with evil because almost every time I tried to eat something, I threw up. I was existing on a few bites of yogurt a day, maybe a piece of apple, and I would try to drink water.

I ended up losing about 50 pounds with the stem cell and I continued to lose weight.

It was really fortunate that my family provider found out that I had H. Pylori because I started to get well soon after that. It was causing a lot of acid reflux and vomiting, not the stem cell transplant side effects.

»MORE: Read other cancer patient experiences with chemotherapy

Ask how sick you’re supposed to be. I think it’s always a good idea to share with your oncologist just how sick you really are specifically and whether you’re not eating.

They need to know that, because maybe they haven’t really noticed. Unless you tell them, they can’t notice that you haven’t really eaten at all.

The main oncologist that I’ve had out of MD Anderson was always very honest with me, and I appreciated that. She said more than likely it will come back, but using the maintenance therapy will keep it away longer.

The Revlimid wasn’t very hard on me at that time, and I had a very good quality of life then. I still had a lot of pain because of the damage that was done to the ribs and in the back from the earlier myeloma. I still had some of those lesions and a lot of bone pain, and so I wasn’t able to work or do some of those really normal activities.

I could enjoy going to my daughter’s sporting events and socialize with my kids, go to football games, or things like that. I just wasn’t able to go run or something.

It was a lot of pain. Since your feet are a little bit numb, then you might not feel even when you bumped it. That’s why people get infections in their toes and stuff.

It is a huge problem with cancer, but you can work around it. Actually, I’ve been successful with gabapentin to treat neuropathy.

We were really cautious with things about neuropathy, especially during the beginning. I didn’t even realize that that wasn’t going to go away and become a really big problem.

I remember the first time I felt some neuropathy. It was from Velcade. They pulled the chemo from me because not being able to walk — that feeling in your feet is just supercritical. I have neuropathy now, but it’s never gotten as advanced as a lot of people I know. I have a family member that suffers a lot from neuropathy.

Again, telling your doctor if you’re having even small symptoms of neuropathy is important.

Revlimid side effects

The Patient Story: You were in remission, but then there was the neuropathy issue. The next year, November 2015, you’re on Cytoxan and Pomalyst. Your first time with Pomalyst, you had nausea. You had Zofran to help combat that, right?

I do remember my doctor telling me to think of Pomalyst like a cousin to Revlimid. That was actually positive to hear because I hadn’t had a lot of side effects with Revlimid. It was nice that it was a pill because that means one less trip and sitting in a hospital getting IV.

When you talk about quality of life, I think it’s awesome. If you can get your therapy in a pill form and just take it at home and that your weeks aren’t lined out like chemo Monday, chemo Tuesday, that’s better. Just taking a pill every day is easier, if possible.

Dexamethasone side effects

At first, when I just started seeing things more gray and shadowy and a little bit hard to see, like at night driving, I just thought, “What if the cancer’s gone into my eyes or brain?”

I have to admit, that point caused a little panic. I was so relieved when I found out it was cataracts and could just easily be fixed. I had double cataract surgery, and it was a breeze.

VIDEO: Multiple Myeloma Relapse & Clinical Trials

Symptoms of 1st Relapse

When they started to grow a little more, I had one little spot on my side, on the rib area. It was not even as big as a quarter, and it wasn’t really purple at that point. It didn’t really look the way multiple myeloma often looks, where it’s more purply. That came later.

It was sort of slow growing, too, but it did start to grow. Then I got one on my arm, and it was finally biopsied. Then they knew that it was cancer. It eventually showed up in a PET scan, too, and it had other spots.

Another relapse

It started out as the size of a pea. It was a little tumor on my clavicle. Actually, it wasn’t picked up originally on the PET scan either, but that’s where it was both a blessing and a curse because I can actually see the tumor and see how I’m doing and and know to get treatment early because it really was my best diagnostic tool.

With my kappa light chain multiple myeloma, it doesn’t always show up in the blood test — at least not until it’s a little more developed. Yet, we could see this growing. That new symptom meant it’s time for a different treatment.

Does it get easier or harder?

It gets harder every time. I wish I could say that it got easier, but even though you know it’s incurable, you just get so hopeful.

Maybe you can get used to a chemo and the routine. I’ll take an anti-nausea pill once a day, and that works. I can take this rest reflex and have my regimen down.

You know what to expect. But just about the time that you’re into a routine, boom, it changes and you’ve got to change therapies as well.

Just being told again that it’s been in a partial remission, and then it would come back in my spine or something. I would think, “Here we go again.” I’m back to being concerned that it’s going to be aggressive or if that other treatment is going to work. It’s just mentally challenging. It’s like a roller coaster.

I always feel better once I get a plan in action. Even once I know the treatment and I start doing it, then I’m okay again. I have to have a plan out there. It’s really like waiting in limbo because lots of times you’re waiting on the doctors to decide what treatment is best for you or for insurance approval or just rescheduling.

Coordinating care with MD Anderson with an oncologist that was closer to me usually took an extra couple of weeks, even just for the doctors to communicate and decide.

New treatments

What Darzalex and Pomalyst were like

I never thought I would forget, but honestly, lots of times now, all the chemos have blurred together in their side effects.

I didn’t have a lot of trouble with Darzalex until it was combined with a different treatment later, as I recall. But the Darzalex with Pomalyst wasn’t as bad. 

Cytoxan is one of the worst, but the side effects are treatable with Zofran and stuff. I’m one of those people that will go ahead and take the anti-nausea meds for the acid reflux and the different things if they’ll help. I’m not one to say, “Oh, I don’t really need it. I can tough it out.” Cancer’s tough enough.

With everything to go through, I say accept the medications and use them the way they’re designed to be used. With pain, too. You don’t have to live in a lot of pain if you just monitor it correctly.

I was neutropenic a lot, so I would have Neupogen shots quite regularly. Being neutropenic makes you really tired and ache all over, especially your legs, plus your immune system is jeopardized. It was scary to be going out in public.

That’s where you had to balance whether you should go to a social event with all your friends or you should stay home. It’s like the things people are doing on a regular basis with COVID, but I was doing that years ago.

You have to make those tough decisions of whether to go out and about and enjoy something and wear a mask, or maybe best just to stay home. I did miss some important events because of not wanting to be around crowds during flu seasons.

CAR T-cell therapy trial

Both clinical trials showed some success. It was just not as long as I would have hoped.

When you put into perspective that you’re there at the NIH for a few weeks — plus for a clinical trial like that, you needed to go monthly for the first 6 months — traveling from Wyoming to Maryland, it is quite a feat in itself. I did get months of not having to take another chemo, and they have given my body, my kidneys, a little bit of time to heal.

My main problem was being neutropenic. My white counts were low with the CAR T-cells, but I was running out of options. What the CAR T-cells really did was bought me time until research could come up with another new therapy.

In 2019, I had the CAR T-cell in May, and the treatment I ended up going on that fall had just been FDA-approved in August. It wasn’t available for me when I needed something back in March and April. The CAR T-cells just didn’t work as well with me as they did with a lot of the other patients, as far as long term. They worked very quickly, and the pictures are proof of that.

It was incredible to watch a huge tumor just shrink away like daily. You’d look in the mirror and go, “Wow, it’s shrunk again.”

That’s the blessing and the curse. I had this pretty ugly-looking real skin tumor. It’s visual, but at the same time, then you get to see the good when that cancer goes away.

What the CAR T-cells really did was bought me time until research could come up with another new therapy.

»MORE: Read more on FDA approvals of clinical trials

Second NIH Trial

I was so surprised when I got a call from National Institutes of Health (NIH) that they were going to do the same CAR T-cell therapy again and that I fit the requirements. The first trial was trying to find which dose and which amount of cells was the optimal amount and not to give you too much or too little.

When they thought they had found the magic amount, that’s what they wanted to do in the second CAR T-cell. It was still the same type of trial, just a much higher dose than I got the first time.

I was the first person ever to do the second dose of this beast anti-BCMA. It was a little bit scary being the first. At the same time, I had already had one CAR T-cell, and it was going to be basically the same, just with a different dose. That was maybe going to be a little bit harder with side effects, but they weren’t even sure if that was the case.

I slipped in under the radar. I had it in March 18th, just when COVID hit. I arrived at the end of April at NIH, and they quit taking patients. I was one of the last patients, probably because I came from Wyoming. If I hadn’t come from so far, they might have sent me home. At least I made it in to be able to do that.

Infusion reactions

I think there were a lot of factors there. I honestly was just a little bit down then, too, and just didn’t have that motivation to take on being sick. I needed a little bit of a break.

Things did work out, though. I ended up finding something that worked better: the Blenrep. Even when I said enough on the other one, I knew that the Blenrep was on the horizon. We were just waiting for it. I’d heard really good things about the Blenrep, except for the visual toxicity.

Blenrep side effects

It was pretty seamless. There was, of course, some fatigue and everything. That was around the holidays then, so I was tired anyway. Oftentimes, you have to counter whatever’s going on in life with that.

I did radiation right after the Blenrep. It was the first time they decided to do that, mainly for palliative care because of the pain. The tumors were so large to do the radiation, but the radiation ended up as a bigger success than they thought it would be.

They didn’t really know whether it was the combination of the radiation and the Blenrep, because then I ended up going almost 7 or 8 months without needing any other treatment.

»MORE: Read other patient experiences with radiation therapy

Stopping Blenrep

I only had one treatment, and then my eyes got so bad that I couldn’t have another treatment. Then there was lots of follow-up with having the eyes checked. I actually had blisters on my cornea. It caused really bad blurred vision.

At first, it was with what we’ve all become as users of phones and computers. I thought that won’t be that bad if it’s not total vision loss. When you can’t read a text or anything, I became a little more techie as far as being able to learn from audio and even have the phone read audio. It taught me a few things, but you couldn’t do things like Facebook and read emails.

That part only lasted a few weeks. Then the part where seeing in a distance like driving was harder for longer. I’m experiencing that again now because I had Blenrep in August, and now I’m experiencing a little bit of blurred vision at a distance again.

Once you’ve had a reaction, they will let you have it a second time once you’re recovered. That’s what I finally got to do a second time in August.

But I had a reaction again. Now, even though Blenrep did work to treat the multiple myeloma, I can’t have it anymore.

That’s the way it should be: to be cautious and not let someone lose their vision over it.

What’s next?

I’m also waiting for another new novel chemo. I was waiting for it to get approved. It’s that kind of run-around between the health care facility and the insurance.

I find it so important because this time I delayed a little bit. That getting on the phone and staying on hold for an hour or however long it takes to get hold of the insurance company and say, “I thought that this would be approved.”

I actually did get approval for isatuximab, but I haven’t had a dose yet.

Waiting for the new clinical trial

I’ve been more tired than normal. I think I realized that with the Pomalyst I had forgotten, but it reminded me that it causes back pain.

I’ve definitely had some more back pain and a little bit of nausea, but because of the steroids, I’m eating better, which I probably needed to. I just hadn’t been that interested in food, but the steroids have made me crave food again. I actually think I probably needed to eat better, so that’s a positive.

I still have a lot of bone pain, but overall, I’m doing okay. It’s amazing, because 9 years out I’m still better than when I first started out.

I just had a PET scan yesterday, so I won’t know until tomorrow what the results are. My PET scan before this didn’t show a lot of disease except for in the skin on my chest area, and there weren’t any new bone lesions.

The change that they measure had gone up significantly. They were way out of line, so there’s definitely myeloma showing in the blood in a significant amount. Probably not doing that well. I definitely needed to get going on treatment.

VIDEO: Living with Multiple Myeloma

Quality of Life

How have you been able to manage the emotions?

Faith is very important to me, for sure. There’s no way I could get through this without knowing that God definitely does have a plan. I have been able to see blessings through this.

You do live your life a little bit differently and make sure that you focus on having some really fun times when you can.

It is difficult for sure, though, to keep going through and finding the new treatments. Then you have to realize there’s only one alternative, and that’s there wasn’t a new treatment or that you get worse and couldn’t have a treatment.

Multiple myeloma research is amazing right now. The fact that there have been this many treatments that I could try is actually a blessing. But it is difficult to always be switching.

It is difficult for sure, though, to keep going through and finding the new treatments. But then you have to realize there’s only one alternative, and that’s there wasn’t a new treatment or that you get worse and couldn’t have a treatment.

Traveling to get treated

It meant that I really needed to accept help from people that were willing to drive me — lots of family and friends — because lots of times after the chemo, I didn’t feel well enough to drive.

My blood pressure would drop or something, so it did mean getting rides. Those chemos were twice a week or every week with a week off. That was a lot of driving.

I have been able to have some treatments at the hospital right in our town, but they have just a very small chemotherapy setup. It usually depends on whether it’s a therapy that my oncologists think I can have in a small town and be able to handle if there’s a side effect. For the new one that I’ll be having, they want me to do it in Billings, Montana, which is 180 miles away.

Tips for dealing with your insurance

I usually try to get the phone number and the lady’s name. If you can get their name and if they’ll give you a direct line, then you can tell the hospital personnel that’s doing the finance research where or who to call. I try to usually make their job easier by hooking them up together.

Not always will they give their direct line, but still, work until you get to the person that’s really in charge of it.

Last time, I found out that interns had been contacting the nurse, the actual office, and they weren’t contacting the correct lady.

You just have to try to be nice, even though it’s really frustrating sometimes. It’s usually not anyone’s fault. It’s just there’s a lot of miscommunication in health care.

We talked about electronic medical records and all these things, but we are so far away from having any type of really good system where it’s all coordinated together.

It’s especially difficult for someone like me because I’m dealing with a hospital right in my own town to have labs, then a hospital where I’ll have my chemo and test sometimes, then traveling to MD Anderson or NIH.

Sometimes it’s considered locally even if it’s 180 miles away. I’d be dealing with three facilities and having to coordinate the communication between them.

What can you say to those beginning their myeloma experience?

Take one day at a time.

I know that’s sort of simplistic, but it is true because if you start focusing too much on the unknown, it won’t work. You have to focus on what you’ve got to do just that day, what fun you can have, and how you can make that quality day.

It’s better not to look too long-term, because with multiple myeloma, it’s probably going to change. You’re probably not going to be able to make a plan out there. Any minute, something can happen, and then you need a different therapy.

Doing those follow-ups when they’re scheduled is really important. Do things in a timely manner because they can help you catch it right off.

Take one day at a time. If you start focusing too much on the unknown, it won’t work. You have to focus on what you’ve got to do just that day, what fun you can have, and how you can make that quality day.

What’s your advice for people looking to join a clinical trial?

Talking to your local oncologist might help. They might not. They might know.

The website that I went to was You can pull up any trial in the whole U.S., or you can just pick an area or pick your cancer and narrow it down.

Then just be brave enough to call the numbers or submit something online. There is, of course, a lot of background information that they’re going to want, and you will have to send them labs and different scans. Really, your oncologist will end up sending the records, too, so it’s not all on you.

When I went through a trial, there was a patient care coordinator assigned to me, and she called me almost daily to update me. It was a lot, but you really have a whole team that’s looking out for you. It is so different than when you’re going to a regular facility for just chemotherapy, because you’re part of a trial.

It’s a big deal. There’s 6 or 8 people that are assigned to you and a team of doctors that care what happens every day.

Jump in with both feet.

For me, the trials bought me time and gave my body just a little bit of a break from the routine of chemo.

Even mentally, too, it gave me that new hope. I got to see those tumors be zapped away, even though they did come back. The visual of watching them go away and knowing that was going to help.

Shortly after, I did the second CAR T-cell trial, not the BCMA but some form of CAR-T approved by the FDA for multiple myeloma.

I hope that somewhere down the line, someone else will be able to have a CAR T-cell and they’re not going to have to jump through all the hoops. It’s an easier process than a stem cell transplant, for instance.

Jump in with both feet. For me, the trials bought me time and gave my body just a little bit of a break from the routine of chemo.

Getting support from clinical trials

It’s government funded through the National Institute of Health, so all of the health care is covered by the government, all of your scans and all of that.

None of that is out of pocket because you’re saying that you’re going to be a guinea pig, in essence. Then it also depends on your income and different things.

For example, my flight was covered, but I needed a caregiver and my caregivers’ weren’t. There was even a stipend for hotels and food. Then it varied from one trial to the other. You had monthly follow-ups for the first 6 months that you had to go and be there for almost a week.

Every month, I have to have a bone marrow biopsy, for instance, and that’s a lot to go through. Their tests were extensive. It was all covered for scientific research, so it was rather interesting, too.

»MORE: Learn more about the process of clinical trials from one program director

Advocating for yourself as a patient

I think it’s really important to be willing to call up and hopefully know the nurse’s name or the main contact in your oncologist’s office and be able to call them when you’re not feeling well, because maybe that stomach ache is something more. Maybe that leg pain is due to low potassium.

Sometimes, when you go ahead and make that call, they’ll order labs and find out what’s going on.

Everyone has some personal thing that they’re struggling with. I always struggled with the low white counts. The labs would never show absolute neutrophil count, but I learned how to calculate it myself with what was given. Then I could say my absolute neutrophil count is low. I got to the point where I gave myself shots of the meds.

The patient advocacy comes in all forms, and it really is the communication with your doctor, the nurses, everyone along the way.

Even though using the patient portal, most facilities now let you send them a quick email through the patient portal and look at your labs.

I think it’s important to know what’s in your charts better than they know it. Know the names of your chemos, know the prescriptions, what you’re on them for, not just the names of them.

»MORE: How to be a self-advocate as a patient

Patient advocacy comes in all forms, and it really is the communication with your doctor, the nurses, everyone along the way.

For other people going through this, they’ve made leaps and bounds with multiple myeloma with research in it.

It is not curable, but I’m sure you can still live a good life.

Inspired by Connie's story?

Share your story, too!

More Relapsed/Refractory Multiple Myeloma Stories

Donna K.

Diagnosis: Multiple myeloma, refractory
1st Symptoms: None, found by blood tests
Treatment: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T, selinexor-carfilzomib

Connie H.

Diagnosis: Multiple myeloma, relapsed refractory
1st Symptoms: Chronic bone pain
Treatment: IV Chemotherapy, CAR T cell therapy

Elise D.

Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone

Beth A.

Diagnosis: Multiple myeloma, relapsed/refractory
Subtype: Non-secretory (1-5% of myelomas)
1st Symptoms: Extreme pain between shoulder blades, sternum, head, burning sensation
1st Line Treatment: VAD chemo, radiation, stem cell transplant
RR Treatment: 8 chemo regimens, successful combo→selinexor+bortezomib+dexamethasone

Scott C.

Diagnosis: Multiple myeloma, relapsed/refractorySubtype: IgG lambda (majorityof myelomas)
1st Symptoms: Pain in hips and ribs, night sweats, weight loss, nausea
Clinical trial, chemo, kyphoplasty, stem cell transplant
Integrative Therapies Medical Experts

Integrative Cancer Therapies | Dr. Donald Abrams

Integrative Cancer Therapies

Dr. Donald Abrams, Integrative Oncologist, UCSF

Dr. Donald Abrams is a leading integrative oncologist at the Osher Center for Integrative Medicine at UC San Francisco (UCSF).

Dr. Abram shares with us some of his most recommended resources for those of us navigating cancer. From cancer nutrition and diet to natural supplements and discussions around medical cannabis and how to use mind, body, spirit practices, from physical activity, yoga, traditional Chinese medicine, to meditation.

Dr. Abram’s Recommendations on Resources

Cancer nutrition and diet

Dr. Donald Abrams, a leading integrative oncologist at the Osher Center for Integrative Medicine at UCSF, leads us through topics across nutrition in cancer—good cancer diet, sugar, inflammatory foods, and more.

Natural Supplements (Vitamins, Cannabis, Mushrooms)

Dr. Abrams shares his insights and recommendations on different kinds of natural supplements. He also discusses his insights on CBD and medicinal mushrooms.

Mind, Body & Spirit Practices

Dr. Abrams, being a leading integrative oncologist at the Osher Center for Integrative Medicine at UCSF, also discusses mind, body and spirit practices for integrative healing.

About Dr. Donald Abrams

An integrative oncologist at the UCSF Osher Center for Integrative Medicine, and Professor Emeritus of Medicine at the University of California San Francisco. He was one of the original clinicians/investigators to recognize many of the early AIDS-related conditions.  

His integrative oncology interests are in medicinal mushrooms, Traditional Chinese Medicine interventions, and nutrition.  He co-edited the Oxford University Press textbook Integrative Oncology with Andrew Weil, M.D. Dr. Abrams is a member of the National Cancer Institute PDQ CAM Editorial Board. He was President of the Society for Integrative Oncology in 2010.

Education and Training
  • Fellowship in Hematology-Oncology, UCSF Cancer Research Institute 
  • Fellowship in Integrative Medicine, University of Arizona, Arizona Center for Integrative Medicine
  • Internal Medicine Residency Training, Kaiser Foundation Hospital, San Francisco
  • MD, Stanford University
  • AB, Molecular Biology, Brown University 

Thank you so much, Dr. Abrams!

More from Experts on Integrative Therapies

Dr. Donald Abrams

Integrative Medicine:

Experience: 30 years

Institution: UCSF Osher Center for Integrative Medicine
Medical Experts Prostate Cancer

Leanne Burnham, PhD Prostate Cancer | The Patient Story

My Dad Was Diagnosed with Prostate Cancer. Now I’m Fighting It.

Dr. Leanne Burnham: A Caregiver, Patient, and a Doctor’s Journey

Motivated by her father’s prostate cancer journey, Dr. Leanne Burnham, scientist and community program coordinator at the City of Hope, dedicates her time and expertise so that communities of people of color could better understand prostate cancer and its specific risk factors.

Not only has Dr. Burnham been been a caregiver to both parents with cancer, she’s a lymphoma survivor, herself.

Her mission has been to raise more conscious and open conversations among families about their risks of cancer. That makes her a perfect fit in her department: Division of Health Equities at City of Hope.

Dr. Leanne Burnham is doing such amazing and inspiring work, not just in prostate cancer diagnosis and treatment clinical trials but also in patient self-advocacy, support, and other important socio-cultural factors around cancer. Explore our entire conversation below.

Introduction: Dr. Leanne Burnham

I am Leanne Burnham. I was born and raised in Akron, Ohio. Home of Lebron, we like to say. I live in California now. I am a wife and a mom of three. I have a 17-year-old, a 12-year-old and a 10-year-old. 

I’m a scientist at the City of Hope, that’s what I do. I do experiments at the bench for sure. We call it at the bench when we’re in the lab, but I also do a lot of community work and work in clinical trials.

Prostate Cancer

What is prostate cancer?

There’s a lot to unpack. But first of all, women don’t have prostate, so it’s just a male disease.

Another thing that seems silly to say, but the prostate and the colon are two separate things. A lot of times people think they’ve had a colonoscopy means they’ve gotten their prostate checked. But that’s not the case.

According to the American Cancer Society, prostate cancer is one of those diseases with a 100% cure rate at five years if you catch it when the disease is still localized or confined in the prostate.

That’s amazing because not a lot of cancers are like that. Many people would hear, “Prostate cancer is one of the better cancers to get,” or they hear, “Prostate cancer happens to older men,” which is true.

It’s a disease of age, and there have been some studies that by the time men reach their 70s and 80s, many men, if not most, have prostate cancer at some point. But prostate cancer isn’t what ultimately kills a lot of men that have it.

For that reason, a lot of people tend to not get so stressed when they think about prostate cancer and their risk of it.

But it’s important to realize that the second you have prostate cancer cells escape out of the prostate and spread in the body, you go from a 100% cure rate in five years to there is no cure.

There’s no in-between, so all of the treatments we have once the cancer cells have escaped are to prolong life or improve quality of life.

We’ve got some really great treatments out there. We’ve got cutting-edge treatments nationwide that are really extending the lives of many patients, and they’re living great lives. But I’m at the City of Hope, so, of course, I’m partial. 

It is also important to point out that, yes, prostate cancer is very curable, it happens a lot to older men, but that doesn’t mean it doesn’t happen in younger men.

It doesn’t mean that there are no aggressive forms in younger men. It certainly doesn’t mean that if you have prostate cancer, you’re just going to be cured and be fine because it’s not that way for everyone.

Diagnosing and Staging

First of all, you start with a PSA test. That’s testing your prostate-specific antigen, which is a protein secreted by the prostate. It’s circulating in your blood, so that’s one of the first markers they can test and say, “Hey, something is going on with your prostate. It might not be cancer, but something is going on.”

After a PSA test, men will get a biopsy, then they get a Gleason score. Pathologists look at the tumor under the microscope and assign a score based on how cancerous the cells are looking.

The higher your Gleason score, the more aggressive your cancer is.

There are genetic mutations that not everyone has access to, but some physicians provide that for their patients. Especially if they have a lot of family members that have had prostate cancer.

You can look at the genetics and see if there are some mutations that make the tumors more aggressive. What makes it hard to pinpoint treatments for prostate cancer, and to find a cure ultimately, is that prostate cancer tumors are very heterogeneous.

If you’re taking a sample from one part of the prostate and another sample from another part of the prostate and you’re looking under the microscope, they look different. There are different genetic mutational landscapes in those tumors.

Prostate cancer cells are very smart. Every cancer cell is smart. I’ve had cancer but I also have tremendous respect for the cancer cell, its ability to navigate its way and go undetected by the immune system, its ability to receive treatments and figure out ways to resist those treatments and form mutations.

The ability of resistant cells to keep growing is truly amazing. Cancer cells find a way, I tell you, but the key to its science is when they find a way, we have to tackle that new way.

»MORE: Read more prostate cancer stories

What inspired you to focus on prostate cancer?

It was totally unfamiliar to me. I don’t really have a family history of cancer at all. My dad was relatively young. He was like 50 at the time. He worked out a lot, he ate very well, he was going to Mustard Seed (organic grocery store) and things like this.

One day, he called me as I walk out of a physics class. I picked up the phone but he wasn’t talking; he was just crying.

I was like, “What in the world is happening?”

I just heard him crying on the phone, and he said, “I have prostate cancer. You’re the first person I’m telling. I haven’t told your sisters, so if you can come to the house when you get out of class and I’m going to talk to all of you guys. I’m just letting you know.” 

At the time, I was a premed student, so he was reaching out to see if I had any advice, which I didn’t know about prostate cancer at all.

That experience really kicked off my passion for understanding what was going on with him. But beyond his diagnosis of prostate cancer, I started to notice that Black men in our community were getting that, as well.

It was just something I hadn’t noticed before, so I’m like, “Oh wow, this person at church has it. Oh wow, this person at the grocery store has it.” Different men were getting prostate cancer in their 40s and 50s. It was younger than what I would have thought.

So since I was a student and I had some shadowing opportunities and some research opportunities, I decided to get those hours at Cleveland Clinic, which is number one in urology in the nation, and that’s where my dad is a patient.

I went, and I was able to spend quite some time there. I was with a physician one time when he walked into a room with a Black patient with prostate cancer, and when he walked in the hallway with me, he said, “I hate these cases.”

He said, “Because every time I see a Black man in their 40s, or 50s with prostate cancer, it’s almost like it’s a different disease than other prostate cancers.” He was like, “You have to treat it so much more aggressively. It’s just a different ballgame.”

That’s when I thought, “Wow. I never had thought about it. Was there a difference in race and all that?”

From that point, when I went on to Loma Linda University to get my doctorate, I decided that I was going to focus my dissertation on prostate cancer and Black men specifically, and looking at reasons why their tumors might be more aggressive.

Prostate cancer in Black men

There are so many reasons why that is, and there’s been a lot of research that goes into looking at the multifactorial reasons behind that. We do know that Black men are much more likely to get prostate cancer.

Different numbers float around.

The American Cancer Society says that Black men are 76% more likely to be diagnosed. We do know that Black men are much more likely to be diagnosed at younger ages. When they show up to the clinic, they’re at a more advanced stage.

We also know that they are more than two times more likely to die from prostate cancer.

But what’s new on the forefront that we have found in the past five years doing clinical trials that include Black men is that when Black men are given cutting-edge treatments that are out, they actually respond better to treatments than men of other ethnicities, which is really exciting for any disease that you look at.

You can look at breast cancer, colon cancer, or others. If you have a certain demographic that is most high risk and doing the worse, if you can show that if you give them medications, they’ll do better, that’s a win-win for everybody at the end of the day.

Disproportionate risk to prostate cancer

Watching him go through his surgery and radiation and seeing his medications and things that he was on made me realize how private prostate cancer can be.

I really have never even talked to him about this, so dad, don’t get mad when you watch. I noticed some issues come up that maybe men would be embarrassed about. That was the first time I saw it with him.

Now that I’ve worked with hundreds of men with prostate cancer, that appears as a common theme.

Men are scared of certain treatments. They don’t want to have the side effects and don’t necessarily feel comfortable talking to people. They feel isolated sometimes.

That was the first time I saw my dad not be such a superhero. He became more human at that moment. Maybe he was embarrassed or nervous. I wasn’t used to seeing him like that.

DNA and genetic component

In terms of different reasons why he got prostate cancer younger, or Black men in general, for sure, there is a genetic component. I’ll start with the things you can’t change.

You can’t change your DNA. The reason that Black men in the United States specifically are at increased risk for aggressive prostate cancer is because their DNA happens to trace back to the DNA of West African men.

This makes sense because, in the history of the US, the transatlantic slave trade, Black people in the US came from the western portion of Africa. Not surprisingly, men in West Africa have very high rates of aggressive prostate cancer as well, so that DNA matches.

There are certain variations on certain chromosomes that we know that are more likely to occur in Black men than other ethnicities that makes them more likely to get aggressive prostate cancer.

Role of Vitamin D

In addition to that, my boss, Dr. Rick Kittles, the Director of the Division of Health Equity at the City of Hope and an internationally known geneticist and prostate cancer researcher, has shown for a decade that there’s a link between vitamin D deficiency and prostate cancer risk.

People may have heard about COVID going on, like, “If you’re vitamin D deficient and have COVID, that’s not a coincidence.” Vitamin D deficiency leads to a lot of pathogenic trends.

With prostate cancer specifically, we know that vitamin D deficiency leads to tumor aggressiveness. But how that relates to Black men is that our bodies make vitamin D from the sun, and our bodies are dependent on sunlight.

The more melanin you have in your skin, the less vitamin D your body can synthesize.

If you have darker skin, and then in our lifestyles now, we’re not outside in the sun as much as we used to be, we’re much more likely to be vitamin D deficient.

In the African-American population, about 70% are vitamin D deficient or insufficient. There’s a vitamin D link to prostate cancer as well, then we know that there’s diet and lifestyle, of course.

It’s always good to have a healthy diet, of course. But we’re doing studies at the City of Hope right now where we’re looking at the link between charred foods, like barbecue or grilled foods, and the ability of the consumption of that to contribute to more aggressive tumors.

Socioeconomic factors

There’s also socioeconomic status, which goes a lot of different ways. But first of all, it controls your access to healthcare that you have.

Of course, if you have better access to healthcare, you’re going to have earlier screening, maybe a better team of doctors who will treat your case with a precision medicine approach, and you’ll have access to newer cutting-edge treatments.

But the other part of socioeconomic status that we’ve really dived into in 2020, given our nation’s culture, is looking at discrimination, especially in healthcare and medicine and in science really.

We know that stress kills, literally. And there are studies out there, and I published on it, on how much cumulative stress somebody’s taken on over their lifetime. We know it occurs more often in Black people.

If you have that cumulative stress, it dysregulates your HPA axis. It dysregulates how much cortisol your body is making and how your body responds to that cortisol and looks at glucocorticoid receptors. But that’s real science; we don’t have to go all into that.

Comparing cancer cells in Black and white men

Basically, what I’ve shown previously is that when I treated Black prostate cancer cells that I was growing in the lab with cortisol and compared them to Caucasian cells. I had Black cells and I had White prostate cancer cells.

The Black cancer cells grew more aggressively, and they upregulated these genes in these proteins that made them more likely to resist therapy. You could have this cumulative stress that would dysregulate your stress hormone system, making you more likely to get cancer. Then once you do get cancer, it makes you less likely to respond well to treatment.

That’s a very interesting concept that’s being studied right now. There’s a lot of research dollars going into that nationwide. I’m not working on that anymore, but I can’t wait to see like the results that come out of that.

Ignoring the risk factors

This is something that infuriates me, for sure. I’ve also published on this.

First of all, in Southern California, where I live, we did a study looking at more than 400 men and found that with 54% of Black men, their doctors never even talked to them about prostate cancer screening. We have to start with that.

A lot of men are not even getting screened when they should. That is because prostate cancer screening recommendations for a while we’re saying, “Okay, screen every man at 50,” and then in 2012, the US Preventive Taskforce said, “We’re not screening men at 50 anymore.”

The problem is that it really hurt Black men, and that recommendation was based on studies that looked at 200,000 men that did not have prostate cancer.

They had done the PSA test to see if it was indicative that they would get prostate cancer in the future, but the studies say over 95% were men of European ancestry.

This recommendation is applied to everyone, but it didn’t consider a racial difference in prostate cancer risk.

The American Cancer Society and Prostate Cancer Foundation says that if you’re Black, and you’re 45, you need to get your PSA tested. If you’re Black, and you have family members that have prostate cancer, you need to get tested at 40.

This is the recommendation, and then you go to the doctor and your doctor says, ‘Actually, no, you don’t need to be screened.’ That’s a big problem.

That happens so many times. Of course, if you go to the doctor and the doctor says you don’t need to test, who would want to get the test? You’re just like, “Okay, I’m good. I don’t need to get the test.”

That’s the first thing. But then once you do get the test and you get your PSA results back, there are differences in how those numbers should translate based on race.

For a while, the number that men would look at is four nanograms per milliliter of your PSA. If it’s higher than four, then maybe you want to do some follow-up.

It’s actually 2.5 for Black men, according to the American Cancer Society. Dr. Rick Kittles has published that, actually. You can look at numbers of 1.5 in Black men and it can be predictive years down the road that it’s going to transform into prostate cancer.

A PSA of 14 is quite alarming and then by the time he was diagnosed, it was 64, as far as I can remember.

When you go to the doctor, and you have an elevated PSA, and a high Gleason, I can’t tell you how many times where I’ve had people reach out to me and they’ll say, “Hey, my Gleason score is seven and my doctor says that I should do watchful waiting.” I say, “Did they look at you? Do they know that you’re Black? Did they get the memo?”

It’s not a one-size-fits-all blanket approach sometimes. You really want to make sure that your physician, first of all, is referring you to a urologist. I would definitely say, go to a urologist at that point and have them help you make the decision and hopefully with somebody that’s well-versed in how this disease affects men differentially.

Watching out your genetics and mutations

You hear about BRCA mutations of breast cancer. Not surprisingly, if you have a high risk of breast cancer in your family, that also translates to prostate cancer.

They’re both hormonal cancers, but particularly, if you have BRCA mutations that run in families, we can treat patients with those mutations with PARP inhibitors. There are different kinds of PARP inhibitors that are in clinical trials right now. You’d have to check and see what’s available for you.

Oftentimes, we know that these mutations lead to more aggressive tumors. But sometimes, it’s like hitting the jackpot because then you have access to an additional line of therapy compared other patients that don’t have those mutations.

Genetic Testing

I think it would be individualized, and that the urologist would discuss with the patient their family history and just get a sense of how high their risk is. I don’t believe that it’s offered to everyone. Just because you want it, I’m not sure that you can necessarily get it or your insurance would cover it.

You could always pay for it out of pocket, but not everybody has that luxury. But if you have multiple family members that have prostate cancer, it is definitely something worth looking into.

Ongoing studies on PARP inhibitors

Dilemmas and decisions

I love working on clinical trials, because to me clinical trials, how I try to explain it to people, is like a VIP access to cutting-edge treatment.

Many people can be afraid of clinical trials because you might think that you’re going to be a guinea pig. There’s a lot of mistrust in clinical trials in the Black community, for sure. Number one, because of the Tuskegee syphilis experiment that was just a trial gone completely wrong for 40 years.

There’s a lot of mistrust about clinical trials and who’s funding it and who’s behind it, and if I will be a guinea pig or get a placebo.

A lot of people have an idea that they’re going to get a placebo when in actuality, if you participate in a clinical trial, you are either going to get standard of care, which is what’s offered in the clinic to anybody that have your particular disease, or have the option get the VIP treatment on top of the standard of care or in place of the standard of care.

The VIP drugs don’t get to that stage just like that. It’s years and years in the making so by the time it’s to that point, we, scientists and physicians, feel very confident that this is going to work.

Thus, it is important to point where it’s at in a clinical trial and that there are different phases of clinical trials too. There’s phase 1, phase 2, phase 3. Obviously, the later the phase, the more people have used that drug in that disease setting before. So you can decide if you want to do a phase 1 trial or feel better with a phase 2 or phase 3.

Stratified Clinical Trials

With clinical trials, they typically, in the past, have not included a lot of minority populations—Black, Latino, Asian, Native American, for sure. So it really does a disservice to everyone because you need to know how a drug would work in the context of different genetic variations.

One drug may work really well in one demographic, and it might not work as well in another, so we really try to accrue.

This means recruiting and enroll Black men in prostate cancer clinical trials, which makes sense because they’re more likely to get the disease and die younger.

It’s important to look at these new VIP cutting-edge drugs and Black men could really benefit from them. As I mentioned before, some recent trials enrolled a lot of Black men. We call it race stratified clinical trials.

There were a few studies where one was looking at hormone therapy, one was looking at chemotherapy, and one was looking at immunotherapy. In all three of them, the Black men that participated in the trial had longer survival than men of other races and ethnicities.

When we looked at that, scientists like me who do health disparities research were like, “Wow, that’s so encouraging.”

At the City of Hope, we have a team of scientists and physicians and clinical research nurses, and statisticians who come together and think about diseases and ways to help people who suffer the most from that disease.

Talazoparib clinical trial

Alongside Dr. Rick Kittles, Dr. Tanya Dorff, who’s the Director of the Genital Urinary Program there, and Dr. Zijie Sun, who’s another prostate cancer researcher, we designed a clinical trial to use a PARP inhibitor called talazoparib. It’s a newer-generation drug that Pfizer makes.

This trial is also sponsored by Prostate Cancer Foundation and we’re going to be using PARP inhibitors in a racially diverse group of patients so we are going to have a third of the patients be white men, a third of the patients be Black men, and a third of patients be Asian-American.

The Asian population is very heterogeneous, so I just hate to throw it all into one.

Many Asian-American men actually do better with prostate cancer than white men. Black men do the worst. So we want to see how this drug works in different races. But we’re not just picking races just to see; there has to be some sort of a scientific reason.

Racial Differences in Androgen and Androgen Receptors

The reasoning there is an interplay at the cellular level between PARP and androgen receptor. Androgen receptor has some variations that affect its function.

Androgen and androgen receptors are crucial for prostate cancer cells to grow. That’s why if you get prostate cancer, one of the treatments is hormone therapy because we want to block androgen and the androgen receptor.

There are racial differences due to genetics where different trinucleotide repeats that exist in the antigen receptor. There’s different links, so they’re shorter repeat links and there’s longer repeat links.

Asian men, not just American, tend to have longer repeats, and African-American men tend to have shorter repeats. The repeat length may affect the men’s response to this PARP inhibitor with the talazoparib. We’re going to see.

The study just kicked off this past month and we’re starting to accrue patients. It would be one more drug in the arsenal because as I said, this is going to be offered to patients who already have metastasis.

They can do different drugs that are out there, but this PARP inhibitor could be something that’s extra added to their hormone therapy, and that’s what we’re looking at. We’re looking at the Talazoparib specifically with Abiraterone acetate at this point in time.

Developing targeted therapy according to race

That’s something that we could check in the future. We could look at their androgen receptor, look at your trinucleotide repeats, then we could say, look, you’ll be a great candidate for this drug in the future beyond clinical trials.

But it’s not going to target the shorter. It’s the same with everyone. We think that there may be differences in response in the androgen receptor and the trinucleotide repeats within that receptor, within that gene. But we don’t know what to expect.

It may work well for everyone, but if there is a difference, we want to tease that out.

This is a two-year study, and we assess the study. You don’t just start the study and then just let it go and check at the end. You’re constantly tracking your progress as it goes, so we should have a good idea by the end of the year.

Building trust in clinical trials

That to me is the most important part of it.

In the past 20 years, there has not been an increase in the number of Black physicians accepted into medical school. That’s the problem. It’s not making it through medical school; it’s getting accepted into it.

A study came out of Oakland last year that showed how much better the outcomes were and how much more the diseases were addressed when Black people went to Black physicians.

We look at it in Black maternal death rates and infant mortality, and we know that just by the presence of a Black nurse or a Black physician in the room, the mortality rates go down, just by them being in the room.

That is a lot to unpack on why that is, but there is a trust factor when you have cultural competency in the room. Race doesn’t have to match all the time as long as your physician is culturally competent and sensitive to different communication styles and cultural contexts. It can work just fine, but we know that there are still many barriers, for sure.

When they go into the office, the patients feel the bias going both ways. There’s bias on the part of the patient, and then there’s bias on the part of physicians.

»MORE: Learn more about the process of clinical trials from one program director

First of all, increasing the number of minority physicians, in general, would help. But what we like to do is to have a diverse team—diversity, in terms of race, gender, age, and occupation. We have physicians, nurses, scientists, and many of us who work within the Division of Health Equities at the City of Hope have personal ties to how we even got into this.

I got into this because of my dad, and so I’m speaking to Black men, and they’re saying:

  • “Oh, I feel fine. I don’t have any symptoms.”
  • “Really? Because my dad didn’t have any symptoms either.”
  • “Oh, I don’t know if I get that done. I’m not going to have a normal life.”
  • “My dad had that, and he’s doing great.”

That works on these teams who have personal ties, and so it comes across as more genuine, for sure.

We’re not just going to collect samples for research and just leave. We are there to help the men. We do actual prostate cancer screening in the community.

I know people freak out. We don’t do digital rectal exams in the community, but we do the blood tests, we provide the men their results and then we offer follow-up care and it’s not just at the City of Hope.

We partner with community clinics for men who may not have insurance or under-insured to make sure that they get that follow-up care, especially if their numbers are low enough that we think it could be caught early.

That’s really the goal of everything that we do. But, yes, the mistrust is a real thing and we try to tackle it that way.

Another way to really increase minority enrollment in clinical trials is just to provide access in communities of color.

Not everybody can travel to your main clinical trial center. I know at the City of Hope, we’re very fortunate to have community sites in Pasadena, Antelope Valley, or Santa Clarita, Pomona.

There are different locations to make it easier for patients to go from their neighborhood to a closer location to get treatment, which helps.

There’s financial incentives as well, and that can be controversial for sure.

Some of our trials offer them, and some of them don’t. But a lot of times, when you’re a cancer patient, getting to clinical trials is expensive. You and your caretaker have to call off work, you might have to get lodging, have transportation costs, and so a clinical trial can provide some financial incentive to help overcome that. It can really open the door for a lot of people.

Telemedicine as a tool

Telemedicine definitely has its pros and cons we’ve all learned during quarantine, for sure.

That translates to prostate cancer as well. If you don’t live close and have the technology and the app you need to communicate with your provider, it can give you access to perhaps more than you were exposed to before.

City of Hope Work in Communities

It’s our community-based prostate cancer program directed by Dr. Rick Kittles. I am lucky and blessed that he allows me to be the project coordinator for that. I work under him to recruit licensed phlebotomists. We recruit volunteers.

It is not hard to recruit volunteers because these events are the highlight of our week. They’re so fun. We get so much more out of these events.

Anything that we give back, we receive back in the energy of the individuals that we meet and we touch.

First of all, we provide education.

Let’s say we’re at a church. Usually, the pastor will let us get on stage for five minutes to say what we are doing and why it is important.

We know in the literature that, unfortunately, the men who are most at risk for aggressive prostate cancer don’t think that they are. So the first piece is letting people know they belong to the high-risk group.

Then a lot of men are afraid of the digital rectal exam. We let them know that it’s the PSA test now. You can get the DRE when you go to the doctor, but since 2017, you lead with the PSA. 

A lot of times, when they find that out, they say, “Oh, okay. You don’t have to do that. Then I’ll do the blood test.” That’s the next part of it.

We also let them know that most of the time, with prostate cancer, you don’t have any symptoms. Men will be at Taste of Soul or the Long Beach Jazz Festival and are sitting there with their drinks and their cigars, and they’re, “I feel great. I feel great.” On the other hand, you might frequently be urinating at night.

We go into the communities, educate, interact, do the blood tests, and then follow up within two weeks. And we tell them, “Don’t freak out. That doesn’t mean you have prostate cancer. But either way, you just want to stay on top of your prostate health.”

We send every person an individualized letter. By individualized, it’s an official letter from the City of Hope. It gives them their PSA level. Based on their race and age, we translate to them what that means for them. Not everybody’s letter is going to look the same.

If they are at a younger age but they are showing a 2.5 or a 3 PSA, we’re like, “You really want to follow up and get this double-checked.” We follow up within two weeks.

If a man has very high PSA levels, we will call to make sure they got that letter. We tend to follow up after a few weeks for everyone who has elevated PSA, anyway, just to see, “What have you done with that?”

Many men find out and haven’t told anybody and they’re nervous to take the next step. So we help them with that.

Then we have social workers that help to navigate them getting to their next follow-up person. Whether it’s at the City of Hope, we would love to offer the different treatments that we have there.

But not everyone can travel that far, or maybe their insurance doesn’t allow them to. We partner with community clinics in the LA area where patients can go there as well.

Lessons from Community Work

I’ve learned how much people trust their doctor without knowing their personal risk. They trust their doctor knows their risk. It’s scary how often it doesn’t necessarily seem to be the case.

I’ll talk to men sometimes, and they’ll say, “Oh, I had that test done.” Then I’ll say, “You went and got the blood test?” They’ll say, “No.” Then I find out they’re talking about the colonoscopy. That’s one thing.

A lot of times, I hear, “I got all my blood work. My doctor does all my blood work every year.” Then I’ll say, “Well, did they include that in your blood work?”

A lot of times, it’s not included. They’re checking your blood sugar and your enzymes but not the PSA. Now that you have medicine apps on your phone, they’ll say, “No, I did it. My doctor ordered it.” They’ll pull it up. I say, “If you don’t mind, let’s look and see. What was your PSA?” Then it’s not in there, and then they’re like, “What? My doctor was not testing?”

It’s endearing how a lot of people do trust their doctor. Then it is sad to see sometimes they’re let down, but it’s like, “Now you have the tools. Now you email your doctor, and next time you’re in there, you let them know that you want to have this test, but actually, you don’t have to because we’re going to do the test now, and we’re going to give you a letter, and you can show your doctor.”

Hopes and prospects in prostate cancer research

I think we’re so close. When I got into this when my dad was sick, his doctor told him at that time, “Oh, you have a set amount of years.”

He’s passed that amount of years, and he’s doing well. We know he’s not curable still, but I hope to change that. When I got into this, I said, “I’m going to find a cure for my dad,” many people say. That’s the goal of a lot of scientists. They have a loved one, and that’s why they got into it in the first place.

I’m at a place at City of Hope where we have so many clinical trials, so many cutting-edge treatments, and we’re seeing patients that are really doing well. I just feel like we’re just at the cusp of it.

I’m just like, “Dad, hold on. Just hold on. We’re at the cusp of it.” I do think that it’s around the corner. I don’t think that it’s something that’s decades away. I think it’s sooner than we think and I’m really hoping that’s the case.

Being on both sides: Survivorship and cancer research

I was in science before I got cancer. My dad had cancer first. Then I was in science. But I was walking around with cancer for six months myself, and then I had to do chemo in the whole nine yards.

After that, it just completely changed my thought process and my approach. It changed my outlook on life, first of all. Everything I did became urgent. I don’t know if I’ll be here tomorrow. Everything is urgent.

One in two men is diagnosed with cancer, one in three women. I walk through life like, “Listen, it’s morbid as it sounds.” I’m like, “It’s not a matter of if you’re going to get cancer. It’s just like, ‘When? At what age?'” It’s just so common. We really need to get a handle on something, and I’m so glad we have so many scientists really dedicated to that cause.

It changed my outlook on life, and then it changed my outlook on scientific approaches. I used to sit in scientific meetings, and it’s like, ‘Oh, we can use this drug. Let’s try this and that.’

Sometimes I would open my mouth and say, ‘These are people. Imagine what all of those drugs are going to feel like.’

I know with my lymphoma, I had four chemo drugs at each session. That just was not fun. The idea of like, “You really want to be able to treat your patients with the least invasive method. You don’t want to go so hard on the pain all the time. You want to find something that works, but it’s not so toxic to the patient.”

Then I also think I know what it’s like to walk around with cancer and not know that you have it. You think it could be anything else, and that applies to a lot of people.

When I’m out in the community and people will say, “Oh, I don’t feel like I have cancer.” Sometimes you don’t feel like it, but sometimes you get used to those nagging little symptoms that have formed over a few weeks or a few months. You never want to go off of how you feel when it comes to screenings. 

Another thing, because I’m a cancer survivor, I have to go to my oncologist. But that’s always so weird to me. I’m in the lab and working in the hospital then, “Oh, it’s now my turn to go to the oncologist.” It’s just always weird.

When I went, they said, “Listen, we want to do a colonoscopy on you.” I was young. I wasn’t 40 yet. I’m like, “Fine. Another test.” So I did it. When I woke up, they said, “You know what? We found several pre-cancerous polyps.” I was like, “What?”

I was so happy that I did that colonoscopy that young. If I hadn’t had lymphoma, they wouldn’t have thought to do it that young. Now I know. I don’t wait as long as other people. Now I’ll be referred for a colonoscopy much more frequently than anybody else.

Don’t put off symptoms. If your doctor thinks that you have a reason to be screened for something, don’t be afraid because trust me, you want to be diagnosed at an earlier stage and save yourself some of the hassles, please.

Especially with prostate cancer because it’s curable if you catch it early. That’s literally life or death. You want to screen for that sooner rather than later.

Approaching conversations on cancer risks

I try not to freak out on him all the time. He’s 17 so it’s like, “Oh, everything’s fine.”

Just the other day, he texted me and said, “Oh mom, I’m having an allergic reaction to like 30 things.” Then I responded, “Oh my gosh, what are your symptoms?” Then he didn’t respond. Then I’m calling his girlfriend, calling every everybody to see, “Is he gone into anaphylactic shock?” I just assumed the worst all the time.

He’s used to, “Oh, mom’s just freaking out,” but I look at every symptom as like, “Oh my goodness.” He did have some swollen lymph nodes at one point. I thought it’s lymphoma because it’s hereditary. But it was not the case.

I don’t really talk to him because I take action. We’re going to see what happens when he becomes an adult and has to make decisions independently. 

At that point, he knew his grandfather, who’s my dad. He was like, “Oh, well, he has cancer, and he’s okay.” I don’t know if he thought, “Oh, she has cancer. She’ll be okay.”

He saw my hair fall out and he saw me being sick and tired from the chemo all the time, and he seemed okay.

On my final PET scan, the day that I found out that there was no evidence of disease, I sat him on the couch, and I showed him the picture. Because at that point, my son is a little nerd like me, so he knew like, “Oh my mom. I’ve seen her cancer cells. There’s two nuclei instead of one.” He knew what the cancer cell looked like.

I said, “Let me show you the PET scan. This one, this is the before, and this is the after.” He said, “[gasps] there’s nothing there.” I said, “Yes.”

His shoulders just dropped. It’s like he sighed. I didn’t realize, in that moment, that he had been walking around like this for months.

»MORE: Parents describe how they handled cancer with their kids

I saw it, and I was like, “Oh my gosh. It’s the little boy Beck that I remember that’s worried for you.” I don’t think he worries about it anymore right now. It doesn’t seem like it. That’s going to be something interesting to navigate as he will not be missing any screenings.

Normalize these conversations

It’s super important. I hope it changes with younger generations because my sister-in-law just beat triple-negative breast cancer last year during COVID, and she’s only 40, the same age as me. 

When she was asked about family history, it was difficult to think who had what cancer? I know it’s the same with me. People died, and you don’t really know what they died of.

I hope that really changes moving forward and we become more open to sharing. I know in my family and my husband’s family, prostate cancer is not limited to one person. It’s rampant. The more you talk about it, the more you normalize it.

It’s difficult because a lot of older generations may have had prostate cancer, treatments are not the same as they were then. Maybe you hear horror stories, and then the younger guys are like, “Oh, I really don’t want to do it.”

We really try to stress that the testing is different, the treatments are different, the outcomes are different. The side effects after the treatments are different because things are improving. It is important to talk about it as a family to know that your individual risks are based on your family members.

Patient Self-Advocacy

I am just so grateful that Al Roker shared his story like that. A lot of people know him, and they’re going to think, “Wow. He had this, and he’s doing well. I can get a screening for this. If I get that diagnosis, it’s not the end of the world. I can come through it on the other side.”

It’s important, and I recognize that importance. When we’re out in the community, I recognize my limitation. I’m a woman. I don’t have a prostate.

I can talk, turn blue in the face, but it’s not a one-person job. I make sure I show up with people who have been previous patients because men want to see somebody they can relate to that has been through and come out on the other side.

»MORE: How to be a self-advocate as a patient

I really think support groups are a great thing as well for men who have been diagnosed with prostate cancer. Just seeing men talk about it and be open about it definitely helps with anything in life, for sure.

We see it with the COVID vaccine now, too.

One person in the family gets it, you talk about it, now the cousins get it. I was the first person in my family. Now everybody’s gotten it. But it’s taken weeks and weeks to get to that point. That’s an example of you just talk about it and then it normalizes it for everybody else.

Message to Black men cancer community

Well, that’s something I hear in the community a lot too. Men will say, “Oh, I don’t want to have this treatment because I’m afraid that I won’t be able to have sex anymore.” That is true for a lot of different treatments.

One thing I tell men, it’s funny, but it’s not, but I’ll say, “Listen, if you don’t treat it at all, you won’t be able to have sex anyway, and you’re definitely not going to have sex when you’re six feet underground. It’s just not going to happen.” I make sure that they know that, but that’s just more on the joking side.

There are nerve-sparing surgeries offered now where results are not the same as they were 10 years ago. Your chances of regaining that function are so much better. Al Roker spoke about how he was able to regain that function. So don’t let that hinder you.

At the same time, I’ve been a patient, and I firmly believe that it’s the patient’s choice. Some patients decide, “I don’t want to do any treatment.” It’s their life, and that’s totally fine.

I’ll never forget when I spoke to a man who had a very elevated PSA and a Gleason of 9, and he was like, “I don’t want to have anything done.”

He was in a support group, and other men—it was a room of all black men —were telling him, “Oh, I had this treatment, and I had that treatment,” and at the end of the day, he was like, “I just would rather just see what happens, and I’m just going to live with my decision.”

You just have to respect that at the end of the day. I don’t know if I could have done that before I was a patient myself.

That is an example of you just wanting somebody to be able to make an informed and educated decision.

If you know all that and that’s what you want to do, do you boo. Because you’re going to have to live with that. You should be allowed to make your own choice.

Read Other Prostate Cancer Stories

Clarence S., Early Stage

Cancer Details: PSA levels fluctuated but were never extremely elevated, cancer contained to prostate
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment:Radical prostatectomy (surgery)

Steve R., Stage 2

Cancer Details: Started at stage 2 and gradually progressed to stage 3, and then to stage 4 with metastasis to lymph nodes
1st Symptoms: Rising PSA score
Treatment: IMRT (radiation therapy), brachytherapy, surgery, and lutetium-177

Al Roker, Gleason 7+, Aggressive

Cancer Details: Aggressive but caught early
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment: Radical prostatectomy (surgery)

Bruce M., Gleason 8/9, Stage 4A

Cancer Details: Staged Gleason 6/7 pre-surgery, post-surgery changed to 8/9, PSA level at 27
1st Symptoms: Urination changes, brother's prostate cancer diagnosis
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Casodex & Lupron)
Dennis Golden

Dennis G., Gleason 9 (Contained)

Cancer Details: Staged Gleason score 9
1st Symptoms: Urinating more frequently middle of night, slower urine flow
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Lupron)

Theo W., Prostate Cancer, low-end high-risk

Cancer details:
Low-end high-risk prostate cancer, early kidney cancer
1st Symptoms: PSA level of 72
Treatment: Surgery, radiation

Jeffrey P., Gleason Score 7

Cancer Details: Diagnosed at 59, biopsy had not detected it
1st Symptoms:None, routine PSA test, then IsoPSA test
Treatment:Laparoscopic prostatectomy
Mical R. feature profile

Mical R., Stage 2

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Treatments: Radical prostatectomy (surgery)

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1st Symptoms: Inability to walk

Treatment: Chemotherapy, monthly injection for lungs
Paul shares his prostate cancer story

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Prostate cancer patient Paul discusses his cancer journey, including how he processed his diagnosis, his experience with hormone therapy treatment, how he found support, and his advice to other prostate cancer patients.

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Michele’s Acute Myeloid Leukemia Story


Michele loved the outdoors and the beach. At 24, she was living a vibrant and active life until she was diagnosed with relapsed refractory acute myeloid leukemia.

In this video series, Michele shares her story of diagnosis, chemo and stem cell treatment, relapse, and the side effects she had to endure. Her continuing journey through AML is such a shining light of inspiration, especially for young cancer patients.

  • Name: Michele G.
  • Diagnosis (DX)
    • Acute myeloid leukemia (relapsed/refractory)
  • 1st Diagnosis:
    • Age at DX: 24 years old
    • Symptoms:
      • Bruising
      • Tiredness, shortness of breath
      • Itching
    • Tests for DX:
      • Blood tests
      • Bone marrow biopsy
    • Treatment
      • 2 stem cell transplants
      • IV Chemo
      • Targeted therapy (Xospata)

Table of Contents
  1. How I Got Diagnosed
  2. Going Through AML Treatment
  3. Relapse and Treatment
  4. Survivorship: Life After Diagnosis

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

How I Got Diagnosed

Video (Part 1)

Michele tried to ignore the bruising, tiredness, and shortness of breath.

At 24, she was living an active and healthy lifestyle. Michele enjoyed playing sports and exploring the outdoors with friends, but the persistent bruises and itching prompted her to several doctor’s visits. Her labs eventually revealed she had acute myeloid leukemia (AML).

Here, Michele tells us how she faced and accepted her diagnosis.

About me

I’m from Connecticut. I enjoy just being outside. I love going to the beach, and also I love playing sports. I play basketball and soccer. I just like being active and healthy eating. I love to cook as well. 

I recently got very into cooking tofu, which I know is very different. [It’s] something that doesn’t have a lot of flavors, but you can add flavor to it to make it delicious.

My AML symptoms

Throughout high school, even college, I never used to get sick at all. But a couple of months before my diagnosis, I started getting sick.

I had a lot of sore throats. I went to the doctor probably at least 5 times. They just would give me Claritin. 

At the time, I’m just hanging out with friends, doing all these activities. I’m overworking myself. I didn’t really think anything of it. But when I look back, all the symptoms were there.

I had shortness of breath. Walking to my car, I’d be out of breath. I went to work one day, and I was there for an hour. I was exhausted, so I ended up going home and just sleeping that afternoon. Then I would get little bruises on my body. I thought I must have run into something, not a big deal, but I was itchy. Separate from the diagnosis, I ended up having scabies. But before I went to get my lab work done, I itched myself so much. 

I was bruised all the way down my legs and on my back. That’s when I thought, ‘I need to go to the doctor.’

When I realized how serious this might be

It’s hard, of course, in retrospect. It’s easy to draw the lines and connect the dots afterwards. But at the moment, it’s so easy to explain away every symptom. I think so many of us experience that. 

The itching on my legs and the bruising showing everywhere was the ultimate signal. I remember it was the day after my 24th birthday. I went to get my lab work done at Quest. They had it faxed to my doctor, and he said my counts are just completely off. 

The white blood cell was 3 times the amount of a normal person, and my hemoglobin was 3 times below in the opposite. I think they don’t normally see the white cell go that high. That part was interesting.

I went to the emergency room that night. They gave me 2 bags of blood. They didn’t really know what was going on. I slept in the emergency room and then went up to a wing in the hospital to stay. They thought I had Lyme disease. They weren’t sure.

A couple of days later, I had a bone marrow biopsy. When the results came back, I got sent up to the hematology wing. Then I got transferred to another hospital to get treatment.

How I got through the “scanxiety”

When I was first diagnosed or when it was first happening, I thought this is minor because I never get sick. Like it’s not going to be a big deal. 

When they mentioned Lyme disease, I thought maybe I got bit by a tick or whatnot. But when they did the bone marrow biopsy, I didn’t realize what even the test was for. My thought process is, “I just don’t know what’s going on, but I can’t imagine it’s bad.” 

I still do remember him telling me I have leukemia. My mom was there. I didn’t even realize leukemia’s blood cancer. I didn’t know much about it, and it was hard.

The doctor actually treated my grandparents, too, but for a different form of cancer. It’s nice to have familiarity with him. Not that I was around that much, but he treated my loved ones as well.

I remember it as a little superficial. I thought I’m not going to have any hair. When I got moved from the normal wing to the hematology wing, it was just so much nicer. 

I didn’t even realize then the impact of having cancer. I was told I had leukemia, but why is this also so much nicer? This probably isn’t a good thing. But my parents were there, and it was so nice to have them.

My mom wanted to sleep there, but I said no because she lives literally a half hour away. I don’t want her to sleep there. They came every day, which is super nice. My other family members came, too.

I also remember texting my friends. I think I was going to see them or something. I had doubts — should I tell them this? 

A huge part of being sick for me is knowing the general reaction of people feeling bad, but I don’t want someone to feel bad for me.

I started to tell some of my friends, and they were super great about it. 

When I was transferred to Yale to get better care, that’s when it became really hard. It’s far away from where I live, but my parents came to see me every day. Just the shock of it. I’m 24 years old, and I’ve never gotten sick. I can’t believe this is happening to me.

»MORE: Patients share how they processed a cancer diagnosis

How my doctor broke the news

They were super supportive.

I remember there were residents or fellows around me, and then the doctor eased into it. She grabbed my hand and asked if I want to call my mom or anything. I said yes.

One of the residents around my age took my hand when I started crying and stayed with me. She was super sympathetic. We chatted about other subjects just to get my mind off things, too.

How can you tell someone something so hard? But his approach and having those people around me definitely made me feel comforted. 

Recalling the moment of my diagnosis

I’m very much comfortable now with my diagnosis.

Thinking about it brings up the memories of what I had to go through or what I had to put my parents through. That’s the hardest part.

Back to telling new people, sometimes I have a tough time. That’s something I struggle with even today, just because I don’t want people to pity me.

Breaking the news to family and friends

Definitely in strides. It’s obviously a super heavy conversation to have.

My parents were the first ones to find out, and I had them tell my family. I was just so emotional even just to send the text that I was diagnosed. I only texted a handful of my friends. Others, I didn’t actually tell.

But they’d understand that I’m not responding back for days because I’m going through treatment, or I just can’t talk on the phone all the time because I was really tired.

»MORE: Breaking the news of a diagnosis to loved ones

I think taking it in strides and segmenting out my work friends, my family, and then having them tell each other so I don’t have to feel the need to tell everyone about my diagnosis.

Later on, as the weeks progressed, I felt more comfortable, and some came to visit me.

During the first week back, I texted my home friends who live around the area, and I told them it’s fine to tell everyone else. Some of them also came and visited me in the hospital.

It just made me happy. They were so supportive.

I do remember times when I would have 20 text messages on my phone. It almost felt like people feel the need to reach out to you even more, and it gets even more overwhelming. 

It’s like a 2-sided stone. You have the benefits of feeling so much love, having everyone text me. But then again, I couldn’t respond at the moment.

I know they all care. It really does show you who really cares about you and who loves you. You are supported by a great family, set of friends, support system. It meant everything to me. 

What is AML?

I didn’t even really know what type of cancer and leukemia. When they told me about it, they’re still doing tests.

There are different subtypes, different mutations. All that medical jargon, they went over and explained to me. They also talked about what could happen in the future. For example, fertility is a huge issue with chemo.

They talked about transplants, because not everyone who has AML gets a transplant. I also remembered them explaining maybe it was genetic for me. 

I wanted more information, too. I thought it was extremely helpful just to understand.

None of my parents and grandparents have leukemia or blood cancer, but other cancers. The doctor described it as it’s almost like a car crash — you won’t know if it’s going to happen.

It was also helpful for your family to hear it right. I think one of the most emotional parts for me when I was getting diagnosed was seeing my dad get emotional wondering that very question: Was it because of the genes that my parents gave me?

Going Through AML Treatment

Video (Part 2)

Her life turned upside down, but Michele bravely faced AML treatments.

The IV chemo, stem cell transplant, and dozens of pills in her daily pillbox brought devastating side effects to Michele — physically, mentally and emotionally. However, she consistently and presently went through it all.

Michele tells us how AML treatment affected her.

What made you change hospitals?

It was the cryopreservation surgery. The hospital I got diagnosed with was a Catholic hospital, and they don’t do fertility preservation. I ended up going to Yale.

»MORE:Fertility preservation and cancer treatment

How did you decide which treatment to take?

As the thing about AML or any form of leukemia, as tests come up, the treatment differs. 

What to expect next was definitely a question eating at me, because it was very uncertain.

The doctors would do rounds. During the first day I was hospitalized, I had 4 different people come in to greet me.

I got there at 7:00 p.m. I’d have 4 doctors in the next 2 hours, and then I went to bed. A lot of information was thrown at me, too.

That part, even though I do like knowing technicalities, was really a lot of information and definitely overwhelming.

I kept a notebook and would write everything down, any questions that I thought of during the day that I’d want to ask the doctor. My mom is in the medical field. Her boss, which is also a close family friend, would ask all the medical questions. It was a comfort for me to have that extra resource there.

I would ask even the nurses lots of questions. Since you see the same nurses, while you only see the doctor once a day unless something’s happening, it’s helpful to talk to them. The nurses were there for me the whole time, too, communication-wise — another line of support in general.

The hospital had a whiteboard. Since a big part of leukemia are blood counts, they would write my counts up there, too. 

Definitely, there’s a lot of information and hard to organize, but having a nurse or being able to talk to someone you’re comfortable with — for me, it was my mom — helps.

That was like an affirmation that was I going through treatment. 

What did you get for your chemo infusions?

I got a Hickman and a central line, as they would call it. I definitely had IVs in my arm before they put the line in. The hard part about this is I’m a tough stick, as they call it. You can probably still see a little bit of bruising or discoloration.

For treatment in general, it’s necessary to have it. They’re doing labs every day, almost round the clock, especially at first.

Until the Hickman is put in, you’re getting poked all the time, which takes up the veins as well.

That was probably one of the first procedures for major treatment event for me, aside from the bone marrow biopsy, which was a little scary, too.

Describe the bone marrow biopsy

I remember the first time because this was the scariest time especially.

At the hospital where I was originally diagnosed, they used something like a drill. That was the only time they ever used a drill. I remember the sound of it and my hands getting clammy. Honestly, it wasn’t that bad.

That time, I did have shooting pain down my leg, but all the other times no. Perhaps it’s the nervous reaction. Not from seeing the needle, but because the needle is huge, and they’re drilling a hole there.

The whole process is kind of nerve-wracking.

The residents were all there, too. I remember them being super supportive again, which made me feel nice.

Then when I got transferred to Yale, they had to do another bone marrow biopsy because it was a different hospital. It’s just been a week, and I had another one, so again, a nervous feeling. Now I’m very used to them.

I was trying so hard mentally to transport myself somewhere else. As it’s happening, I remember my then-fiancé asking me if I want a video or a photo. I said I don’t ever want to see what’s going on back there.

Describe your chemotherapy and side effects

For my first round of chemotherapy, it was 7+3 of cytarabine. It’s 7 days of 24-hour infusion. Then in the first 3 days, I have to take in another push drug.

Having a bag of chemo drugs carried around with me in the shower was just annoying. Then 2 weeks after that, they do another bone marrow.

That’s when they made the decision to do another round of chemo because it was greater than 5%. 

I had 5+2 of the same drugs — 5 days, 24-hour infusion, and in the first 2 days are a push drug. Then they do another bone marrow maybe a week or 2 after the 5+2, and then it was under 5%. That whole time, I was down at Yale for 2 months. 

It was definitely a long time. I didn’t get side effects until a week later because it just takes time for it to kick in. 

The place was nice. They had a healing garden, which I loved to go to when I could manage. Some of my friends were able to take the train in, which is super nice of them. My parents came every day. I definitely had the support system while being down there.

I did make a friend, too. Most people with my diagnosis are white male, age 60+. Obviously, being biracial and being young and female doesn’t hit any of those categories. When I was down there about a month in, I met another girl who was just about 18. We would go on walks together. We’re going through the same treatment. She’s still a friend today

It was nice to go through something together and ask those kinds of questions that I didn’t know anyone else around my age asks. Like, why me?

It was a huge emotional impact on me, and having someone else around the same age group gave me a little more affirmation. It was nice to make a friend.

Tips on dealing with a long hospital stay

I would definitely go on to the wing itself. I would go on walks a lot. I’d do laps. I believe physical health does help mentally as well. The little walks help, too. It’s just nice to be outside and get some fresh air. They have little trees and a little waterfall in the garden.

Then I would wave if there are other people walking, or the nurses would talk to me.

I remember the royal wedding was happening when I was diagnosed, and one of my nurses said, “I’m only going to do this for a couple of minutes.” Then I said, “Stay and watch the royal wedding with me!” She stayed for a little.

I made really good friends with nurses. That definitely helps pass the time and helps emotionally as well. 

I was in the hospital during COVID as well, so I did experience the difference between my first stay and second. There was a point when I was allowed no visitors at all. I would try to entertain myself, so I gained a lot of hobbies.

Before diagnosis, I knit a little, but after diagnosis, I knit a lot. I also watched lots of movies with great recommendations from friends. I still have a huge list today. I enjoy reading now, too. Puzzles were a huge one, too. Fun activities, too, just to keep my mind busy and have a little fun in it.

It’s really finding those little things that will make you happy. 

»MORE: Mental and emotional support when leaving the hospital

What helped reduce the side effects?

Probably the worst ones were nausea. I can’t keep anything down. The chemo is just so intensive. There are medications that help alleviate it, like Zofran. The others are push drugs so that they react faster. But the nurses are great. You can just ring your call bell, and they’ll come.

Another worse side effect was feeling really tired. People are trying to visit, but I’m just so tired. My parents and friends would just then talk to each other.

Then the third one would be strength. The second time after my relapse and coming out of the hospital, I just couldn’t even walk. I was in bed all day.

I tried to be as active as possible, but my body mass decreased so much. I was not eating, and that’s a big one. 

There are days when I’ve tried so hard to eat, but there are days I just couldn’t eat anything. I would try to take supplements. It’s crazy how little you can eat, and yet you’re throwing up. Even if you try to eat something, you just throw it up.

My parents would say, “Michele, just eat. Please, just another bite.”

All of that just weakened my body so much. Obviously, I love activities. I love running. I love being active. All that. 

I can’t even walk. I needed a wheelchair, and it took a couple of weeks for me to even get up to walking up to the doctor’s office. It affected me mentally, too. 

Throughout all my treatment, the hardest point was when I had MRSA a couple of times. Post-transplant, I had MRSA and C. diff.

I was home, and I just actually started working part-time.

I was just so excited to get to work, but after an hour, I couldn’t do anything. I went to bed.

I didn’t know what was wrong with me. Then I ended up calling the hospital a couple of days later, and I was at my lowest point in weight.

I lost a third of my body weight and was so weak.

Again, I needed to use a wheelchair up to the hospital. I spent another week in the hospital during that time. It’s nothing like I’ve ever seen.

What helped gain back some weight?

During my first transplant, the chemo was just so intensive. It took me almost a year to get back to regular eating.

I just couldn’t eat a lot of food, even a year post-transplant. 

I eventually did see a dietician about it and talked about food. The Leukemia & Lymphoma Society has a lot of resources, and I talked to them. My work has a program called Consumer Medical, and they sent me cookbooks suggesting what’s good to eat when you’re experiencing certain symptoms.

In general, a transplant is wiping away your stem cells. You’re starting from scratch. The first 100 days are crucial.

I couldn’t eat fresh vegetables. I still haven’t eaten sushi. No raw meat. Because my immune system is just so weak, I can’t handle any bacteria that a normal person could. That also leaves me at a higher risk.

During the first 100 days, I can’t even leave the house. I had to be super sensitive and careful with food, but I did find the resources. 

Currently, I do feel like my appetite has been good, relatively back to normal. I gained more weight, but obviously not up to what I was before. I think I’m in better shape now, and I’m comfortable with my body.

I did go through a lot of the ups and downs mentally being one way size and then losing that much weight.

I remember sitting on the chair. I was so bony it hurt to sit on a chair.

Even like a year or 2 after transplant, my thought process of my physical body is just so different from someone else’s because my body weight changed so drastically. It’s hard to describe that to someone, especially in a culture that’s so concerned with it. 

There’s this stigma and perception of what a woman should look like.

For my situation, even if I only gained 5 pounds, that’s a lot. Having my body transform so much was a lot harder on me. 

It was great to see the dietitian and reach out to other resources as well.

»MORE: Tips on food and drinks to help during chemotherapy

The 1st stem cell transplant

It was about 4 days of chemo. For me, they did tests beforehand.

There’s different variables with transplants. For me, being young, they did the most intensive chemo, and then a day of rest, a day or 2 of rest, and then the transplant. 

Prior to this, my brother got swabbed. He actually ended up being a perfect match. He lived in Texas at the time, but my dad went out to visit him and discussed it. They took his stem cells out. 

He had apheresis, and they froze his stem cells and then transported from Texas to Connecticut. The technology behind it is amazing. 

My brother had that done in July 2018, but I didn’t get my transplant until September 7th. I was already in the hospital on August 30th, but they were waiting on my counts to recover and the most appropriate time for me to receive the transplant.

He came to visit, too, during my transplant. It was really nice to see him and have him there as well.

I was in the hospital for a month, so that’s probably approximate days of an average transplant. It does take a lot on the body, and my chemo is super intensive.

For a person who’s maybe 60, it could kill them. That’s how they make the chemo bag for your specific regimen. Chemo takes a little time, and that’s probably why I was in the hospital. I was just very sick again and started to lose a lot of weight. Same process. The first 100 days was just extremely tough on the body. 

My immune system is so low. You’re almost like a newborn baby, and I had to get all my vaccinations again 1 year post-transplant. I was susceptible to all the diseases out there, and I was on 20 medications when I left.

I had a Hickman. They put in a PICC line, too — so much medication going through you. 

The medications taken post-transplant

The major ones are TAC (tacrolimus) and CellCept, which are immunosuppressants.

When you get a new immune system, it has to acclimate with the rest of your body. In order for it to acclimate and not attack your organs, which is host-versus-graft disease, I have to take these meds so that doesn’t happen.

Prior to the transplant, I had Lupron injections for fertility and a lot of antiviral and antibiotics. During the transplant, I had a line of TAC going into me. After that, I had antiviral and antifungal medications. I was also on Zofran for vomiting. 

My husband helped me keep track of them with Post-it notes to remind me. We bought those pillboxes, and I remember thinking, “Oh my gosh, I never thought I’d be young and using these pill boxes!”

One of the perks of the hospital is when you go to transplant, they have this kit for you, which included a pillbox. Mine’s big with 4 slots for each day because I’d have morning, noon, afternoon, and evening dosages and regimen.

They also had a calendar printout of all the medications. Post-transplant, they gave me all the medications, so I have them right away before I go home.

When you leave, a pharmacist will come and talk to you to explain everything. The pill chart was an explanation of what the drug is. You’ll have their number if you want to contact them, the doctor, or some stores.

I was still living with my parents at the time, so they were definitely a great resource to have. They would help me with medications, too, but I was very on top of things to get them done. I have my little chart that they gave me and then the pillbox. I would put the pills in all of them. It took a little organization as well. 

A lot of meds, a lot of information. Feel free to ask the person you’re talking to if it’s okay to record them on your phone. It’s just nice to be able to reference something later, especially if you can’t write notes that fast. You can sort out the information after. 

Describe the follow-up routine

After the transplant, the follow-up was 3 days a week. Then it went 2 days a week. I did have MRSA twice during that time period. I was hospitalized for a week, both times inpatient.

Then it went down to once a week and then twice a week. Then, in July of that year, I started going once a month.

By October 2018, I went slowly from 3 days a week to once a week, then to once every other week. By July, I started going once a month.

It’s still a lot. On day 30, I get another bone marrow biopsy. Day 100, another bone marrow biopsy. Day 180, another bone marrow biopsy. Then 1 year post-transplant, another bone marrow biopsy. Then I started getting vaccinations.

Managing anxiety before each bone marrow biopsy

It’s definitely nerve-wracking, but I also thought, “I got a stem cell transplant. There’s no way it’s going to come back.” I was trying to see the positive of it.

Just look at the good side of things rather than focusing on the negative, because the negative will give you anxiety. Some of the things I learned: A) be positive, and then B) keep your perspective.

Having those positive thoughts, even though you’re going through a scan, you’ll have a great support system as you’ve been through it. Just be positive.

You’re going through something so hard right now, but there is a light at the end of the tunnel. You will get through this.

Relapse and Treatment

Video (Part 3)

Learning that her acute myeloid leukemia had relapsed, Michele pressed on. She talks about her second stem cell transplant, round of chemo, radiation, and targeted chemo pill Xospata. Watch how Michele braved another shot at healing.

Symptoms of the relapse

Going through treatment, I became very in tune with my body, and I know when something is wrong. 

I had a swollen lymph node on my neck. I couldn’t even see the jawline. Sometimes I get paranoid if I notice something different. I sought an appointment with my doctor, went to the hospital, and then they were keeping me longer than usual. I was so confused. 

I remember sitting in a room while they did my labs, and I thought something was really wrong. I thought it was going to be a 30-minute appointment, but I ended up getting hospitalized. I called my parents immediately. They didn’t know what was wrong. They just saw that my counts were off.

I forgot exactly what they thought it was. I don’t know what kind of sickness they thought it was, but I was in the hospital for a couple of days. I remember it wasn’t my regular doctor who came up.

The doctor came up and said, “You’re going to get transferred to Yale.” I was like, “Wait, why?” He said I relapsed.

It hit hard emotionally, because I just didn’t think you could relapse after a transplant. I thought it was 99% effective. I don’t know where I was getting that statistic from, but I thought it was effective. 

So it just hit hard.

I remember I didn’t even want to tell my friends, because I kept thinking, “This isn’t real. They didn’t do a bone marrow biopsy. How can they see it?” I guess [with] the lab work, they had scans where they could see it. 

I know you’re not supposed to Google diagnoses, but that’s what I did. It gave me some affirmation for myself.

Processing news of the relapse

I didn’t believe it at all. I was in denial.

But then becoming more accustomed with it, I got sent back to Yale to my regular doctor to touch base and ask the tougher questions.

Obviously, I’m not the only one, but I learned about this genetic mutation that I had. That’s part of the reason why I relapsed. The other part is sometimes having a perfect match, but it can be too perfect.

I didn’t understand those concepts at first. Having those explained helped me understand more and cope with what was going on. 

Having my supportive family and friends more accustomed to my condition, too, helped a lot.

The benefits of meditation

Meditation helped me emotionally censor myself. I had a spiritual connection with myself. It helped me reset for what is going on in my life and just keep it all out.

I did it in the hospital almost every day. 

Describe your relapse treatment plan

It was more intensive chemo for the first round of my relapse. I was in the hospital for a month. Then I went home for a month and went back again to the hospital for a month for my transplant. 

2 weeks before my transplant, I started the chemo pill and was on for a week. It’s also all of a sudden. They do the lab work, and then I’m ready for the transplant.

After the transplant, I was on pause for a little and just restarted a week or 2 ago.

Differences between 1st and 2nd stem cell transplant

The treatment plan for half matches are a little different. I had 4 days of chemo and then some radiation, not as intensive as if you’re having a tumor. 

That part was definitely new for me, and you hear stuff about radiation. The regimen is a little different. 

More transplant side effects

As for the side effects, I had the same symptoms I mentioned before. When I left the hospital, I was just so weak, and I couldn’t walk. The first time affected my stomach and appetite so much. I lost weight again, but not as much as the first time.

What was the radiation like?

I had full-body radiation because obviously blood flows throughout. For someone with a tumor, it would just be that area.

It sounds super scary, but pretty much all they did was measured my body, and then I went into this huge room. It looks like a dungeon, but it’s not scary at all. 

I was just lying there while a light was shining on me. It’s really not that bad. Just the mental thought of it is so much worse than it actually is. It took about an hour, and then I flipped sides. There’s different grades, but I got the lighter dose, so it’s not as bad.

FDA Approval of Xospata (gilteritinib)

When I first was diagnosed, they were discussing that if I have FLT3, then we’ll have to go down this road. But the first time, I didn’t have it. Then after the transplant, in order for it to stay alive, it developed. 

I was recovering from my transplant, and it takes a long time for the body to recover. They didn’t want to mix medications.

»MORE: Read more patient experiences with targeted therapy

Describe the Xospata and side effects

I was just tired, but I started work. I couldn’t tell if it was because of the transplant. I had 2 transplants, which obviously affected my body vastly. I was also tired from the pill, so they took a pause on it. 

Now I just restarted again. I just upped the dose last week, but now I’m at a normal amount, and no crazy side effects yet.

They’re still doing my blood work. My creatinine was a little high, and that was the big concern.

I have an EKG once a week just to monitor the heart. I think a big part of it is the possibility of sending your heart racing, seizures, or possible fainting. There’s some nausea, but not as bad as when you were on the IV chemo.

Impact of taking a pill instead of getting an infusion

It’s better because it’s nice to be home, in your own bed, not getting woken up all the time.

Another huge part for me is with my parents having to travel to the hospital, which is so far away. Being home helps them manage their schedule and gives me peace of mind.

 Being able to do it myself is so nice.

The research and technology with adaptations and how granular in detail they can get the medicine is just amazing and incredible.

Another big thing with MRSA is it’s 6 weeks of vancomycin through an IV. I was able to treat myself with an IV at home and not have to spend all the time going down to the hospital. They would send the medication straight to my house. I can fridge it, and I save a lot of time. 

I noticed for my first and second treatment, they sent me a pole with a bag. With the second one, it’s almost like a ball I could keep it in my pocket. It was pressurized, and it makes it just so much easier for the patient.

Survivorship: Life After Diagnosis

Video (Part 4)

Her bright young mind couldn’t have comprehended her fate at first, but Michele chose to see the positive side of things.

With the love and support of family and friends, meditation, and enthusiasm to meet new friends, Michele now shares her story to give hope and inspiration to fellow young cancer patients.

How to deal with the hair loss

I remember when I was diagnosed, I thought, “Oh my God, my hair!” That was one of my first reactions. 

I used to have hair down to my shoulder, and I imagined I was going to lose it.

When it started falling out, it was so annoying. It was everywhere. I thought I should just shave it, so a lady came up when I was impatient and shaved my head. 

The big part about it was emotionally. I thought I’m going to look like a cancer patient, and that part of it was hard to grasp. Obviously that comes with you, going through so much and then getting sick. 

It does take an emotional and mental impact, because you do want to feel beautiful. Having that support system is just so key in helping with that. I also did look into wigs and had fun with it. 

There is a little section at the hospital where I got to try on all the wigs and work with a hairdresser. I learned about the upkeep and everything. I wore that a lot through my first treatment.

Also, when people came to visit me, I’d just go bald or wear a hat. I’m very into hats, and I have a collection now. My aunt actually gave me another wig. When I relapsed, I got another wig.

New day, new hair.

It was bizarre. I didn’t wear any makeup because I didn’t want it to react with my skin. But as time goes on, you understand it more emotionally, and it’s fine. No one cares at all.

»MORE: Patients describe dealing with hair loss during cancer treatment

Deciding whether to stop or continue working

At first diagnosis and the transplant, I was at home for 100 days and not socializing.

The world was normal then. I really just want to get back to work without overpushing myself.

I went back to work part-time in January. My employer was great. They let me ease into it. I ended up having to go back to the hospital inpatient for a week, then took some more time, and then eventually was able to start full-time. They eased me into it, which is super nice. 

»MORE: Patients talk about working during cancer treatment

The second time post-relapse — and also from having 2 transplants — I kind of steadied myself. I took a little longer before returning.

October 30th, 2020, was my transplant. Then I came back in April and then did a month part-time and then full-time.

The first time is so nice because you’re getting back to normal. But the second time took a while, also because of COVID. I couldn’t leave the house until I got vaccinated. 

I was at home anyways, so I didn’t feel the rush to go back to normalcy.

I just wanted to feel normal.

The experience of being a young cancer patient

Being young was probably one of the hardest points for me emotionally when I first was diagnosed. I thought it was just older people who get cancer. That’s naive and not true at all. 

But I’m healthy. I’m young. I just don’t understand.

It was just a lack of understanding. I felt blindsided by the diagnosis, so I just wanted to find someone else I could relate to.

Meeting someone else in the hospital around my age was extremely nice. Having the same questions, the same diagnosis, and being both young was just comforting in general. 

The Leukemia and Lymphoma Society has a Connection Program, where I can touch base with other people who are around my age group. I recently joined, and I’m excited to know more people around my age.

I wish I knew it during the time when I was going through treatment, but I’m glad to know it now. Just to give you that extra comfort.

The importance of fertility preservation

It came to me as a shock — realizing its impact on my fertility.

It was something they addressed right away. I switched hospitals to do it. It was too late to do preserving eggs, so the next-best option was preserving my tissues, which will produce the eggs. 

The process of cryopreservation

The fertility doctors all came in to talk to me about it. It was nice to hear their knowledge of the concept and have the appointments. I came in for it after my first 2 rounds of chemo.

That’s my first time in anesthesia, but they knocked me out and then just grabbed some of my tissue.

I remember when I was getting wheeled into the surgery room, one of the anesthesiologists told me about her dad just having some type of leukemia, and he just found a donor. It takes 2 years if you got a random donor in the registry. She’s finding out who his donor is, and it gave me a positive light on that aspect. 

The surgery part and just having that whole concept of fertility issues is definitely difficult to grasp, but understanding that there are other options out there is reassuring.

»MORE: Fertility preservation and cancer treatment

Perspectives learned from living with cancer

I definitely think it taught me a lot about perspective and understanding.

It’s a lot, especially at this age. I’m about to live on my own, get married, build my life. It was a very difficult time. There are still hardships. A good thing to have such a great support system. I’m truly loved. 

I learned so much from it about myself, like how strong I am. My emotional understanding was enhanced, and I understood what my body needs physically and mentally. You learn a lot about yourself. 

Give time. I’m a big advocate of meditation because it was something that did huge for me.

We all go about our busy schedules, but taking that time, having that perspective, not thinking about anything, and just relaxing makes you realize what is important in life. You are able to see the positivity. 

It changes your mind and changes your understanding.

I think that as terrible as it was to go through, it changed my outlook on life. I realized how important each day is and how much love there is for each other. 

You never know what someone else is going through, and having that understanding and empathy makes our society so much better.

The importance of self-advocacy

That’s a huge part.

My family’s in the medical field, so they obviously have an understanding, but their body isn’t going through it. They don’t understand what I went through exactly or when I know something is wrong. 

I knew the second time around, I have it back and need to get an ultrasound. I was the one who suggested I need an ultrasound to my doctor. Advocating for yourself is extremely important.

You know what your body wants. All the medication that you’re taking interacts differently. The doctors have a certain regimen, a standard of treatment, but your body is different from someone else’s, and it will react differently. You know when you need certain medications or need extra help.

No question is too dumb to ask. When you need something, don’t be afraid to speak up.

»MORE: How to be a self-advocate as a patient

Why I share my patient story

When I was going through it, I would have loved to see someone’s vulnerability — that openness that I’m going through something, that someone else does, too, that relatable empathy that you have.

It just brings peace of mind to me, and I hope to bring that to someone else. 

It’s something I sought out for and wish I had a little more. I feel like it’s only my due diligence or duty to help others who are going through the same experience.

It has so much impact on me emotionally, mentally, and physically to have someone else going through the experience. It helps me cope with what’s going on. 

I want to share my experience as much as possible. Regardless of the diagnosis, cancer affects everyone. You probably have a family member, yourself, or anyone that has gone through this experience. It is terrible, but you learn the love, and you relate to people. 

Inspired by Michele's story?

Share your story, too!

Acute Myeloid Leukemia Stories


Sasha T., Acute Myeloid Leukemia (AML)

1st symptoms: Easily bruised and swollen, painful hip
Treatment: 4 chemo infusions, bone marrow transplant

Luisa L., Acute Myeloid Leukemia (AML)

Cancer details: Most common type of acute leukemia in adults
1st symptoms: Painful hives on legs & migraines
Treatment: 3 cycles of chemo, total body radiation & stem cell transplant

Hayley A., Acute Myeloid Leukemia (AML), M5

Cancer details: Most common type of acute leukemia in adults
1st symptoms: Severe fatigue and excessive bleeding after oral surgery
Treatment: Chemotherapy, bone marrow transplant

Nicole T., Acute Myeloid Leukemia (AML)

1st symptoms: Severe itchiness, night sweats, fatigue
Treatment: Chemotherapy, bone marrow transplant
Mary Clare

Mary Clare B., Acute Myeloid Leukemia (AML)

Cancer details: Relapsed but in remission after 2nd transplant
1st symptoms: Extreme fatigue, upset stomach, bad & persistent headaches
Treatment: Chemotherapy, radiation, 2 bone marrow transplants

Leslie T., Acute Promyelocytic Leukemia (APL)

Cancer details:A sub-type of AML
1st symptoms:Fatigue, joint paint, migraines, bruising easily, trouble breathing
Treatment:Chemotherapy (Atra & arsenic)

McKenzie R. Acute Promyelocytic Leukemia (APL)

1st symptoms: Repeat sinus infections, abnormally heavy menstrual cycle
Treatment: Chemotherapy (ATRA oral pill & Arsenic trioxide infusions)

Michele G., Acute Myeloid Leukemia (AML)

1st symptoms: Bruising, tiredness, shortness of breath, itching

Treatment: IV chemo, 2 stem cell transplants, targeted chemo pill
Acute Myeloid Leukemia Patient Stories on AML Diagnosis, Treatment & Side Effects Acute myeloid leukemia or AML is one type of leukemia, a cancer of the blood and bone marrow that happens when the bone marrow makes an abnormal type of white blood cell called myeloblasts, red blood cells, or platelets. It’s the most common
Renee F. feature profile

Renée F.

Symptoms: Bruising
Treatment: Chemotherapy, radiation, allogeneic bone marrow transplant
Steve B. is an AML Cancer thriver who experienced a Stem Cell Transplant.
Steve B. Diagnosis: Acute Myeloid Leukemia (AML) Symptoms: Low white blood cell count Treatment: 7+3 chemotherapy, pre-transplant conditioning, stem cell transplant

Lung Cancer Non-Small Cell Lung Cancer Tagrisso (osimertinib)

Ashley’s Stage 4 EGFR+ Non-Small Cell Lung Cancer Story

Ashley’s Stage 4 EGFR+ Non-Small Cell Lung Cancer Story

Ashley was leading a career in her local community college, enjoying being around students, when she was diagnosed with stage 4 non-small cell EGFR+ lung cancer.

In this video series, she shares how getting her kind of lung cancer was like hitting the jackpot in the lung cancer lottery, taking a daily pill instead of infusion chemo, and diving into how her journey changed her perspective and outlook.

Explore her incredible 3-part story series below. Thank you so much for sharing, Ashley!

Ashley timeline

  • Name: Ashley R.
  • Diagnosis (DX)
    • Non-small cell lung cancer
    • EGFR+
    • T790M
    • Stage 4
  • Age at DX: 36 years old
  • Symptoms:
    • Tiny nodules on both lungs
  • Tests for DX:
    • CT scan
    • Tissue removal sent to Mayo Clinic for genomic testing
  • Treatment
    • Tagrisso (osimertinib), 80 mg/day

Ashley describes how seeing her OB-GYN for a cyst turned into news that would change her life: She was diagnosed with stage 4 non-small cell EGFR+ lung cancer.

Ashley takes us through the endless tests, treatment decisions, and how she is actually navigating her new take-a-daily-pill life. Ashley shares her treatment regimen, side effects, and some of the things she’s doing to feel better.

I thought, “There’s hope, and I can keep going. I’m not going to be taken out of here tomorrow. This is not a death sentence. I know what is possible. I know what the end result could be.” 

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Ashley’s Lung Cancer Diagnosis

Ashley’s life outside cancer

I’m from Mississippi. I am an Air Force wife.

I am a mom to a spoiled little dachshund. I was in higher education in my career for many years. I was a registrar at my local community college and also worked in the registrar’s office at the University of Alabama. I enjoy students and all of that. I miss them sometimes. I love musical theater. I’ve spent a little bit of time on the stage putting up my heels, though, because I can’t remember lines anymore. 

First encounter with the doctor

A doctor admitted me right away due to the severity of the infection. He said, “First, I want you to go to the imaging center so that we can know exactly where the infection is.”

It’s just typical of an abdominal CT to go up to the lower portion of your lungs, and that’s where nodules were noted. They thought, “Well, it’s not uncommon to have nodules show up in the lungs when there’s an infection in the body.” He said, “We’re not going to worry about that, but we are going to be solution-minded and figure out exactly why.”

Then 2 weeks later, we looked again, and they were still there when I went back for a follow-up. Nothing in the hospital mentioned the lung situation at that time. We only dealt with the issue that I was dealing with right then and there, but the doctor didn’t forget it.

He could have said, “It’s from the infection, and we’re not going to worry about it,” and sent me away. Then I’m a ticking time bomb. But he was solution-minded, kept a watch on it, and then forwarded me to a pulmonary specialist to look into this. It was very rare, so he felt it needed attention.

Initial diagnostic procedures

The pulmonologist initially did a breathing test. If you know anything about how it’s rated, I was at 94%. I was breathing fine. If you’ve never had one, it’s so hard to do all of that in and out.

I made it to the bronchoscope. I was under anesthesia, kind of in a Twilight Zone kind of thing. They did put me to sleep, but it wasn’t full-blown. I didn’t know what was going on, but I woke up pretty quick, too.

He did his own scans, of course, but it didn’t tell them anything. It was not conclusive, so we went to a needle biopsy. He obviously went in through my back to the biggest nodule that I had. I had over 100 spread across both lungs, 1 millimeter or less. There was one that was like 3 mm.

He went in to grab some tissue from that nodule that was a little larger than the rest. That, too, was inconclusive. By this time, I thought, “What is wrong with me?”

He asked me, “Did you do you work in the soil? Do you garden? Do you plant flowers? Do you work in a plant of any kind?” Those answers were no.

He showed me the scan. It looked like the most starry night you’ve ever seen in my lungs.

Those are all little tiny tumors. He said normally doctors would watch this for 4 months and see if anything has grown. If everything’s the same, then these are benign, and we’re just going to watch them. But he said this is very rare.

Observing my symptoms

I was 36 at the time. I’m 40 today. This is way rare for somebody that doesn’t work in the soil, doesn’t work in any sort of plant, doesn’t work around chemicals, and never smoked. He too was very solution-minded in trying to figure out what in the world it was.

I thought I have some sort of fungus in my lungs because he mentioned that. I thought I’m going to get an inhaler, we’re going to blow this junk out, and I’m going to roll out.

I wasn’t coughing. I was tired, but who isn’t tired? I work 40-50 hours a week. I wasn’t losing weight. I had occasional allergies, but I’m in Mississippi, and we have all sorts of stuff. I get a sinus infection every year but nothing abnormal at all.

Nothing had changed. This didn’t tell us anything. That’s when I was sent to a thoracic surgeon.

Even though sometimes you don’t want to know, but at this point, I wanted to know. My patience was on edge. I need to know now.

More diagnostic procedures

The thoracic surgeon wasn’t there to be my friend at all. He was all about business, cut and dry. That made me a little uncomfortable, but he was so knowledgeable. He was the very best I could have gotten in the entire state.

He comes in. He plopped down and said, “Here’s what we’re going to do. We’re going to collapse your lungs, put a tube down, go in, take out 2 or 3 sections of your lungs, and we’re going to send it off to Mayo to evaluate it.”

They didn’t know what it was, so they ended up going to Mayo. I was just staring at them.

I said, “Hold on, back up. You’re going to do what? Do we really have to do this?” He said, “No, it’s up to you. We don’t have to do anything. But if you want answers, this is what we need to do.”

We did it the following week. I went into the operating room, and that was the first time I had ever had anything major done surgery-wise. That was the first time I had experienced real anesthesia. I had a lot to take in. I had to sign papers saying that if they put the tube in and it did something else to something else in my body, they weren’t responsible.

It was possible that there could be an issue with my lung, and they would have to go back in if air got in there. I’m like, “Okay, I can do this. They’re the experts, not me. I won’t know it, whatever it is.”

Upon waking up, I was in a lot of pain. I felt like there were knives stabbing me in the chest. After a few hours with a morphine pump, I was okay. He removed the line and removed the tube, and I was okay.

They gave me a little bit more anesthesia than normal. I don’t know if I was being difficult or what, but it took me a little longer to wake up than most. The whole process was maybe around an hour from prep to recovery. I don’t recall exactly, but it wasn’t very long. That seems like a daunting process. They’re the expert, yet that was their first time.

Waiting for the results

By the time I left the hospital that next day, he did not know yet. He said he’d never seen anything like it. It was like ground-glass-looking nodules. That’s when the pathology went to the Mayo Clinic in Arizona to make the final conclusion. 

Even then, I still didn’t have answers. It wasn’t until about a week later when that pathology was returned to him from the Mayo Clinic.

They tricked me at the doctor’s office, because he said the nurse called and said he was going on vacation. He wanted to check those incisions on the side. 

My incision was fine. I knew it was fine but okay, so I went in. The doctor came in with that pathology report.

I was by myself. My husband didn’t go with me because I thought they’re just checking the incision. It’s not a big deal. I’m going to zoom over, go in, let him check everything, and come back and go to work. But that did not go down like that.

He was looking behind the door, looking around this little tiny room. He’s like, “Are you by yourself?”

I knew right then what was about to come. I knew. I just had this dark cloud of emptiness that just left. I can’t even explain it. I’m by myself. At that point, I thought, ‘I’m not going to fall apart. I’m going to do this.’

There was a gut punch, the sucker punch of my life, especially when you’re thinking it’s just benign. “Nobody has lung cancer in my family. I don’t smoke, so this can’t possibly be lung cancer.”

They concluded that this was an unfortunate case of stage 4 non-small cell lung cancer.

Both lungs were involved. It wasn’t anywhere else in my body, but both lungs had innumerable nodules. No surgery would benefit. I wouldn’t have any lungs left if they took out all those little bits.

Digesting the news of cancer

It was as if it was almost like an out-of-the-body experience. A dream I’m going to wake up from.

He was very not compassionate. He was like, “I’m sorry, darling, this is lung cancer. Do you want this report? She’ll help you with the rest. Good luck.” Pat, pat on the shoulder. Out he went, unbothered.

I know it’s not his job to feel sorry for me or to coddle me or whatever, but it could have been a little bit more. This is life-changing here. Anyway, he did a good job. The nurse was very kind to me and said she was going to be praying for me, which I welcomed.

I kept it together until I was in the room alone. When she went to make the phone calls, I opened up my phone and texted my friend that was a hospitalist for that hospital. I said, “I have to see an oncologist. Who do I see?”

I was fine. I could hardly see the letters or the numbers on the phone because I was fighting tears. The nurse came back in, and I told her who I wanted to see for my oncologist based on the recommendation of my friend.

Thankfully, I had somebody on that side of things that was in the know, because I didn’t know any of them.

I remember walking out of that doctor’s office, and the ladies at the front desk were like, “Hey, how are you?” They had no clue what I just heard. They were just doing their job and being nice, but I remember just not looking up at them.

I just looked down and handed them my paper, gave them my debit card to pay my copay or whatever it is I had to pay. I just kept my head down walking out that door.

That day, I was dressed for work. I had on dress pants and heels, and I felt like I had cinder blocks for shoes on my feet. I was putting one step in front of the other just to get the heck out of there. Just get me out of here.

When I heard the click of my car door, I lost it. I lost my mind. I was weeping and wailing. If somebody was nearby, they likely would have called a crisis intervention officer to come to help me, because I lost it. I cranked up my car and just sat there. 

Breaking the news to loved ones

I had to call my husband and say, “This is what’s happening.”

I called my mother. She asked, “Do you need me to come and get you?” I said, “No, I can drive.” But I don’t remember the drive to her home. Then I called my dad.

The next day, I did a PET scan just to make sure there wasn’t cancer anywhere else in my body. It was a big 2 days.

I was on the phone the rest of the day telling people. They were calling me and sending messages because word traveled like wildfire. I was just mentally exhausted from the whole thing. To have to think about that and relive that in my mind…

People say it’s not a death sentence. But of course, I went straight to Google. I read about 2% or only teens, at the time, survive beyond 5 years. I thought, “I’m out. This is the end.”

That was heavy thinking about my own mortality. I still am forced to think about it, but I’m almost 4 years in. I have gained a lot of strength in that amount of time.

Lung Cancer Targeted Therapy (EGFR+)

Treatment and testing

My doctor initially, the gynecologist that found the nodules in the very beginning, was in our capital city in Jackson, Mississippi. When he asked about sending me to a pulmonary specialist, he said this is his friend. He knew him. I said, “Would you consider someone local to me?” He said he would prefer me to go see this person.

That’s how it unfolded. My doctor initially was already about 90 miles away from me. My mom lives there. It just made sense that since all the other doctors were there that I stay, too.

Plus, my whole reasoning for choosing doctors in that area is because the equipment is more advanced. They have incredible care within their hospitals. It’s just a personal preference for me.

Locally, we have a cancer center. We have 2 major hospitals. For me personally, I just chose to be there because I felt like there was better care there, more cutting-edge equipment 

I think it’s very important that I have a facility that I trust, a facility that I know will fight for me because they’ve proven that they can do that in my diagnosis. It was just a personal preference. Like I said, it’s about 90 miles away. It’s doable to go and come in a day by car.

Completing the diagnosis

My tissue was already at Mayo Clinic from the thoracic surgeon that sent it over. I’m not sure who connected with who, but my oncologist was able to ask them to complete the biomarker testing.

I waited a long time for that. It felt like it was like a couple of weeks of calling. I actually went there for blood work shortly after, and he was like, “I’m sorry. We don’t have it.” I was almost harassing him.

Finally, he did get it back, and he called me himself. He didn’t send his nurse practitioner or a secretary. He called me himself and said, “Okay, here’s what you need. Here’s what we’re doing. This is the plan. I’m going to send the prescription over to where you want it.” I picked CVS Specialty. 

My question was, “Can I have wine?” He’s like, “Oh, so you want to get sloshed now?” I’m like, “I have permission to do so, right?”

We laughed about that. His approach was, “Live your life how you would normally live your life. You just have to take a pill every single day. Don’t worry about restrictions. Do what you feel like doing.”

I’m going to be okay, but obviously with that comes side effects and a whole lot of things that I wasn’t ready for.

Treatment decision-making

At my initial appointment with the oncologist, there is a mountain of paperwork you had to fill out. He was with me for 2 hours because this was a new world. He told me that he was going to send off the tissue and request for further testing from Mayo Clinic.

He went down the list with all the possible courses of treatment: “If you have PD-L1, this is immunotherapy, this is what it does, and this is how you do it. Your hair will be fine. If you have ALK, it’ll be this. If you have this EGFR, there’s a brand-new drug called Tagrisso. It’s a targeted therapy. Take it by mouth. If you don’t have any, then you’ll be on traditional chemo infusion.”

The impact of a pill

I heard ‘a pill taken by mouth,’ and I’m like, ‘I want that.’ But it doesn’t work that way. You don’t get to choose exactly like that. He was rattling off all these letters and numbers, but the thing that resonated with me was the pill.

I was wishing I can do it, even though I had no idea about a mutation or a biomarker or whatever. Thankfully, he did.

Targeted therapy

I was EGFR T790M, and the oral treatment that I got to start targeted that exact mutation. It’s like I have the lung cancer lottery. If anybody can find something positive out of this, I felt like I had overcome the world. I thought, “Okay, I’m going to live. I’m going to be all right. More runway for me. Where are my pills? Give them to me.”

The FDA just approved Tagrisso (osimertinib) specifically for EGFR+ non-small cell lung cancer also with the T790 mutation.

I had seen people sick on infusion therapy, and I don’t want to be like that. There are people that are so terribly sick right now that are fighting just to get up out of the bed, feed themselves, and to go to the restroom.

I don’t take any of it for granted. I certainly do not brag and say, ‘Look at me. I don’t have to do all of that,’ because I know things will change. Eventually, there will be resistance. There will be a next treatment. I’m not going to get to sit here and be here forever.

I don’t take for granted that I was able to take something by walking to my medicine cabinet and swallowing a pill that has kept those cells at bay and has kept my cancer under control.

Treatment routine

For the very first time, I took my first dose at 9 p.m. In my head, I thought, “If I’m going to be sick from this, at least I will be in bed. I will be able to hopefully sleep it off.” That was my whole thinking around it, but it wasn’t like taking an antibiotic.

You feel funny within an hour. The side effects stay and come and go. 43 months in on the same drug, I still have no side effects. It’s just very weird and strange, but I’m thankful that I can still take it.

Side effects

At first, I felt very worn down. I felt heavy. It wasn’t that I wanted to sleep all the time, but I had very little motivation.

If somebody said you can stay in bed all day, I would say okay. That kind of leveled out. I thought this must be really working hard in my body, like a pregnant lady that’s tired. You’re growing a human; you’re going to be tired.

My body’s trying to get used to it and accept it.

There was a skin rash. I had these little things that looked like little acne bumps all over. But you couldn’t treat it like acne. If you tried to do that, it made it worse. 

I was able to take an antibiotic to combat that. It only lasted for about 6 months or so. I don’t have any skin rash anymore.

Then I had a new symptom of GI flares. Sometimes, there’s nausea and a lot of upset stomach.

There was no rhyme or reason to it.

What helped with side effects?

Imodium became a staple in my purse, car, and my office — everywhere. I even made a joke at work. If I’m running, don’t stop me. I’m sorry, this is a fact of life. This is how it is. I still have the GI flares from time to time.

Exercise and diet

Some days, I get to move my body. Sometimes, I feel absolutely exhausted. I don’t know if that’s a combination of medication, being in the middle of the crisis our world is in right now, and staying at home.

Maybe it’s an emotional thing. Getting dressed is a major ordeal.

I tried to move. I had an exercise bike. I try to get on it. I go outside and tried to walk. But the biggest side effect with Tagrisso to date is fatigue.

Some days, if I want to just sit or stay in bed, turn on Netflix, turn on some music, and sit in the recliner or lay down, I will.

When I don’t eat junk, I do feel better. Diet does absolutely play a part. I can feel when I’m dehydrated. I love coffee, so I would much rather drink coffee all day than water all day. But I can feel the difference between when I do drink water and when I don’t. 

I have to listen to my body.

I don’t have a port, so they actually stick me. It’s a lot harder for them to get a vein when I’m dehydrated, and it hurts. I get back to realizing I have to drink water whenever I’m going to the doctor. I noticed a huge difference when I don’t drink enough water. That often helps to boost energy.

I’m not a big supplement person. I know a lot of people rely on supplements, but I don’t. Every once in a while, I have vitamins and whatnot. Matcha and green tea, they say, are helpful. I might drink it today and then not for a month or 2 and then drink it again. I’m not consistent with it.

There is a holistic clinic near where my doctor is that does natural infusion. I badly want to go, but it takes $150 to do it. Insurance doesn’t cover it, but it’s all good things.

It’s supposedly all natural, and it would give you vitamins and minerals that your body needs to help. It’s specifically for cancer patients. 

It’s okay to draw boundaries

I wrote an article, and it was on not feeling guilty when dealing with a physical battle, whatever it is, especially cancer.

I don’t have any children, so I don’t understand what that looks like for some. I feel like as a wife, I have the responsibility of keeping the house clean and having a meal on the table when he gets home from work. Some days, I just don’t feel like cooking. That’s the last thing I want to do, and he understands it.

Don’t feel guilty for the things you don’t feel like doing. Your body has changed. You are the same person, but you’re different. There’s a new thing in you that’s changing, and it affects people differently. Some folks still work full-time.

It’s okay to say no to family if you don’t want to do a family gathering. It’s okay to just say, “I’m going to sit at home, and I’m not going to go to that.” It’s important that we understand that we’re dealing with a lot.

Some might not understand us because they look at us on the outside and think, “They look fine; they must be fine.” That’s always a good education topic. We all don’t look like the cancer patient on TV, but we are still sick.

Sometimes we just have to educate others about how we’re feeling and not feeling guilty about it. 

Getting the targeted therapy pills

My doctor called and said, “You have EGFR, T790. You need to be on Tagrisso. I’m going to call this then or send it up to the CVS Specialty pharmacy.” But they declined it.

I had no clue of any of this or how it all works. I’m on the phone with the secretary, and literally, she and I talked so much. I was writing letters. They were writing letters. too.

Thankfully, I had a very close friend that also works in oncology, and the doctor that she worked for prescribed Tagrisso. She said it has just been released as first line, so insurance companies don’t have the update because it is that new.

I got on the computer and Googled it. I found an article. I printed the article out. I put it in with my letter, and my husband thought to call the manufacturer, AstraZeneca, to see if they can help us.

He did. They wanted to speak with me. I talked to them, and they confirmed that it has been approved in September.

The lady at AstraZeneca said the insurance companies don’t even have the addendum yet because it’s that new apparently, and they’re later in their updating.

I did phone calls to AstraZeneca, to the insurance companies, and to the pharmacy like it was my full-time job for about 48 hours.

I wrote the letter. I printed out the article and sent it back to the insurance company. My doctor wrote a letter. AstraZeneca said they would be happy to write a letter, but it didn’t come to that. They did their own research and approved it.

In the meantime, AstraZeneca understood where I was and that I was a brand-new cancer patient. I needed to start my treatment. They put a starter of 15 pills, and I started that very next day free of charge. Everything worked out within about a week.

That was both an amazing experience and frustrating, to say the least, because I’m blind. I only ever had antibiotics for a sinus infection or upper respiratory sickness.

When the doctor sends in the prescription, there was really a lot of red tape you have to go through just to get in some sort of survival mode.

Here’s this cancer growing in my body. It’s been almost a month now. I need to fight this stuff, and I’m just walking around fighting to get the meds I need.

I was thankful. I was nervous to be able to start the drug because I thought of the possible side effects. Am I going to start throwing up within 30 minutes? Am I going to be able to hold it down? Because a lot of people can’t. 

Thankfully, my body accepted it, because there are many out there whose bodies won’t. It’s a really awesome, incredible, life-preserving drug. We can’t thank enough for the cutting-edge research done on that.

Hopefully, there’ll be something next when I need something that’s similar to what I’m currently on for EGFR resistance.

Progress monitoring

I go every 2 months for blood work, and my blood work is fine every single time. It’s another thing to be thankful for because so many have to come off of their chemo because of different blood counts.

Then I have scans every 4 months. I was doing every 3, but we got pushed out to 4 months just to not risk getting any sort of radiation poisoning. Everything has been stable since.

I do CT scans. I don’t do PET scans. I just do head, neck, and basically full-body CT with and without contrast. 

I’ve developed relationships with the techs and the nurses because I’m a frequent flyer! Sometimes they change out and I won’t know who’s there, but normally it’s the same people.

They’ve become my family. I could say, ‘Wink at me if it’s okay,’ and luckily I get same-day results.

Dealing with scanxiety

So many of my friends that I connected with and the lung cancer community have to wait days for their results. If that happens to me, I would lose my mind.

If I go get a scan at 7:30 in the morning, by 9 a.m., I’m sitting in the doctor’s office getting the results. We all have scanxiety. I’m thankful that I’m in a smaller community.

Living with Lung Cancer

Finally, Ashley shares how lung cancer changed her perspective, outlook, and her life.

To Ashley, she was lucky enough to be taking a daily pill instead of going to IV infusions, feeling like she still had some sense of normalcy. Despite her odds, she shares the gift of reflection and hope with her cancer community.

Here’s her story of living life with lung cancer. Thank you for sharing your story, Ashley!

Living with lung cancer

I made the mistake of going to Google. Then I started finding groups on social media and saw people that were living with this.

I thought, “There’s hope, and I can keep going. I’m not going to be taken out of here tomorrow. This is not a death sentence. I know what is possible. I know what the end result could be.” 

I started looking at it as a chronic disease and then one day at a time. Because one day at a time is all we get anyway. I’m able now to think about things from a different perspective. I can get low. I can get sad, but I try not to camp out there.

Initially, when I was first diagnosed, I said, “This is what intentional living is supposed to look like.” 

I always hear, “Cherish every day. Life is a gift.” Those are just pretty words. I didn’t truly understand it. It didn’t necessarily click.

When you’re faced with your own mortality and it is concrete that this might end sooner than later, then there’s a mind shift. There’s a perspective shift. There’s a new mindset that comes in.

Do I have it all together? No. Am I always positive? No. But I try to be positive, and I try to always share the good things in that Tagrisso group.

Inspiration in the community

I am proud to tell people I’ve been here for 43 months. To the person that just started last month or today or last week, I want to give hope. There were people in front of me through a screen that offered me hope when they were sharing their story.

None of it is obviously to brag or anything like that, but just to say I’m on this journey. I was 36 years old. It felt like the rug was ripped out from under me.

Ultimately, it’s the club that nobody signed up for. It’s the social club, the army — whatever you want to say —that nobody signed up for.

We were drafted, but there’s an entire international group of incredible people within this community that simply want the same thing, and that’s more runway.

It helps to have people that understand you.

My husband lives here in this house with me. We sleep in the same bed every night. But he has no clue what it feels like to have lung cancer. I can talk to him and tell him how I’m feeling until I’m blue in the face, and he still doesn’t have a clue.

When you connect with someone that also has just cancer in general, whether it be breast or any of it, we understand each other in a way that others can’t understand us. We understand a different outlook on life that others can’t understand. 

Changing outlooks

I often say that I wish people could get just a glimpse of how we look at life now than before. I appreciate things that maybe I took for granted before — all the griping and complaining because somebody pulled out in front of you. Well, it’s not really important. Move along. 

My doctor said you would revert right back, but I don’t want to do that.

A lot of people say cancer was the best thing that happened to them. It took me a while to understand that, but I understand it now because I’m loved by so many. Nobody necessarily feels sorry for me, but they show love. They check in on me, send me a message, and are praying for me today.

Prayer is the big thing in my life. It means a lot that somebody is thinking about me. Before, maybe I wouldn’t get those. It’s just been an incredible experience to be loved by so many people and also to be able to share like I’m doing today.

When I see or hear of somebody that’s newly diagnosed with cancer, regardless of what kind, I feel compelled to reach out to them to say, “Hey, you’ve got this. You’re going to fight. It’s going to get rough. You’re going to experience this, this, and this, but you’re going to be able to keep going. You’re going to get up every morning. Push through even when you feel like giving up, because giving up isn’t an option.”

We were handed this for whatever reason; we don’t know the reason. At first, I thought I was being punished for something, but that’s not how it works. That’s not how the universe serves us. That’s not what whatever higher power that you look up to wants.

This is merely something that has happened to us and not who we are. I only was able to grasp that through time, because it felt like I did something wrong to deserve this diagnosis, when in fact, it just happened. Like a car wreck. We didn’t know what tomorrow held before lung cancer, and we certainly don’t know what tomorrow holds with it. I try to keep that perspective as well.

Being able to take a daily pill

I think at the time, and even now, the pill road was more of a freedom. It’s hard going to the doctor when I’ve had other things come up. If it like was going to the doctor every single day, it’d be like a full-time job.

Taking the daily pill gave me a sense of feeling more normal, even though normal is basically sitting on our clothes dryer.

I try not to use the word ‘normal,’ because I don’t think there is really a normal. But for my own life, I felt like it would give me more of a sense of normalcy.

I wouldn’t be running to the doctor. I wouldn’t be going to the infusion room. I wouldn’t be constantly checking labs.

I had taken a pill before for something, and so that just felt like the normal thing to do. It was something I knew, whereas going to a chemo room with other sick people that were in all kinds of different stages and sitting for however long just felt heavy.

And it is. It has to be. I’m not there, but I have friends that have gone there. They make friends, which I like that part — developing relationships with those around you. I just wanted to be able to swallow a pill at my own home and not feel like I had to be interrupted.

I know one day that’s coming for me. I will have to go and do that. I feel like a targeted therapy is a little bit lighter on your whole body, the whole makeup of all the cells in your body, because it only attacks the bad cells and not the good, unlike what an infusion would. I guess it’s that piece.

There’s also that selfish piece of I want to be able to continue living as normally as possible without the interruption. That’s the selfish side of the treatment.

Inspired by Ashley's story?

Share your story, too!

Chronic Lymphocytic Leukemia

Stephen’s Chronic Lymphocytic Leukemia Story

Stephen’s Chronic Lymphocytic Leukemia Story

Stephen was 45 years old when he felt his first symptoms that sent him to the doctor. After seeing specialists and undergoing several scans, he was diagnosed with chronic lymphocytic leukemia or CLL.

Now on ongoing targeted therapy, Stephen shares the details of his CLL diagnosis story to help others go through their own CLL treatment and experience.

Stephen B's CLL timeline
  • Name: Stephen B.
  • Diagnosis (DX)
    • Chronic lymphocytic leukemia (CLL)
  • Age at DX: 45 years old
  • 1st Symptoms:
    • difficulty swallowing
    • fatigue
  • Treatment
    • Rituxan
    • Bendamustine
    • Targeted therapy BTK inhibitor

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

1st Symptoms video

Stephen shares his story of his first chronic lymphocytic leukemia (CLL) symptoms.

From being a very fit and active triathlete, Stephen started feeling the first symptoms of what changed his life forever – getting diagnosed with CLL.

Explore his story below and hear about his experience, including some very important messages to the patient-caregiver community.

Life Before Cancer

I am a very multi-faceted guy. I’m 61 years old, a happily married father of two girls, and grandfather of four kids aged 2 to 11. 

I reside in suburban Philadelphia, work for a Wells Fargo bank. That’s my professional side.

My passion side has always revolved around multi-sport racing, triathlon, marathoning, multi-sport activities, and things like that, including having been a running coach and a triathlon coach for many years before that.

I come from a soccer background, went to a local college on a soccer scholarship, and then continued to play high-caliber soccer for several years until I discovered the beauty of multi-sport racing and marathon.

Some people would have a real problem with me calling that beautiful because most people look at me and say, ‘Why in God’s name do you do what you do?’

But for me, that’s my passion. That’s fun for me.

First Symptoms

It was late 2005. I was experiencing several symptoms, including fatigue. The most prominent one was a difficulty in swallowing. I was just feeling generally crumbled. But here’s the backstory:

2005 was a horrible year for our family. My father had been hospitalized, had a near-football size tumor removed from his pleural cavity, never made it out of intensive care, and passed away a few months later.

I was registered to race a full distance Iron Man triathlon that July 2005, which I had a whole lot of trouble getting to, but my family insisted that I go to. That was kind of contributing to my overall fatigue.

So when I talked to doctors and describe the fatigue, they asked me what my lifestyle is. And they said, “Well, you just went out for a hundred-mile bike ride. You’re going to feel a little fatigued.”

But to me, I knew something was off. Something was just not quite right.

So like many guys who maybe are not quite as diligent as they should be with keeping up on appointments, as long as they’re feeling okay. Maybe I was not ahead of some blood work the way it should have been. I wasn’t ahead of some preventative appointments and things like that.

First doctor appointments

When it came time to try to figure out why I was having this difficulty swallowing, it took several phone calls to my primary care physician. And we tried chasing the symptoms, not thinking it was anything evil; thinking it was something simple.

We tried antibiotics, steroids, or anti-inflammatories, just trying to figure out what was going on. Finally, none of that work. He referred me to an ear, nose, and throat specialist.

The ENT specialist took a look at my throat. Granted I’m 45 years old at the time, the ear nose, and throat doctor said, “Those tonsils are the worst things I’ve ever seen in my life. We would have gotten them removed yesterday.” Which made sense why I was having difficulty swallowing if I’ve got these two large things in the back of my throat.

I scheduled pre-admission blood work for the surgery for the tonsillectomy. And I got a call that nobody ever wants to get from the surgeon saying, “We came across a little bit of a problem with your blood work. We’d like to refer you to an oncologist before we proceed. Do you have an oncologist?”

I’m looking at the phone and thought, why in God’s name would I have an oncologist? I’m the healthiest person on the planet.

One thing led to the next. My wife was a nurse in a local practice. She knew how to get us to the front of the line of a preferred practice. And then we asked for the first available physician within that practice and met the guy.

I can remember the dates like my own birthday.

I met him for the first time, February 17th, 2006, at which point it was more of a consult. He said, “Let’s review the original blood work, consider some possibilities. And then let’s order every test under the sun to try to figure out what’s happening.”

So from February 17 to  February 24, I had everything you could possibly imagine doing. And then February 24, 2006, I received my official diagnosis.

Breaking the news to the family

My wife and I obviously were fully engaged in every conversation with any medical professional.

My initial reaction and what I told my wife was, “These people are crazy. Something’s not right. And it has nothing to do with oncology. Somebody is just not looking at the right chart.”

I was convinced that the diagnosis isn’t right. The patient chart is not right. There’s something that doesn’t add up. It has to be as simple as an infection that they’re missing. Somebody’s missing something.

I guess you can call it denial, but I was convinced that I’m right, and everyone else is wrong and there’s no way this could possibly be oncology. But I agreed to play the game, to check all the boxes and rule everything out, which is why we had the conversations that we had. Thankfully we had the conversations that we had.

»MORE: Breaking the news of a diagnosis to loved ones

Message to others doubting their symptoms

You know your body more than any other doctor is gonna know your body. You, we, the patient community just need to be fully dialed into what you’re feeling, to any changes in routines, any changes in diet, any weight changes, any changes in anything. You’ll know because you’ll feel it.

One of the first things my oncologist asks me when I check in every three months and we draw blood and I immediately want to know what he’s looking at.

He says, “No, timeout, tell me how you’re feeling.” Because that’s such an important indicator of your overall patient health. So I think it’s really important to pay attention, to listen to your body.

One of the things my oncologist told me was, “As you’re going through treatment, be smart. Listen to your body. If you feel that you can carry on with a run or with a workout, do it. But if you wake up one morning and you’re fatigued, pull the plug, go home, get some rest.”

I think people don’t put enough trust or faith in their interpretation of their own body and their symptoms.

They tend to want to put everything on the shoulders of the medical experts who, yes, can look at the diagnostics, can evaluate you, in some cases, in meeting you for the first time. They’re going to know something, but you’re going to have a lot of the missing information.

You’re going to have a lot of missing pieces and you need to speak up. You need to be that advocate for yourself to say, “Nope, something doesn’t sound right with what you’re saying because it’s not jiving with what I’m feeling.”

CLL Diagnosis

Diving deeper into his story, Stephen shares his insights about patient self-advocacy, and how he managed processing the news of cancer with himself and loved ones.

First oncology appointment

That was a very powerful first meeting with that doctor.

At that first appointment, he ordered for me a CT scan, a PET scan and a bone marrow biopsy, more blood work, and X-ray in the course of a week, and said, “Let’s get you back here this time, next week.”

He was ready for me to walk out but I said, “Hold on, I need to know what are we chasing? What are we ruling out? What’s the game plan here?”

And that’s the very first time I heard the words chronic lymphocytic leukemia.

I knew of leukemia. I knew of lymphoma as blood cancers but I did not know the different types of nuances. I had never heard of chronic lymphocytic leukemia.

So that was the first time that I’d heard and explained to me a little bit about what it was. But truthfully, even he, at that stage of the game was saying, “I don’t think that’s what we’re dealing with, but we need to cover all our bases and we need to make sure that we can rule that out.”

I’m getting ready to walk out of the office and my wife says, “Well, maybe we should let the doctor know a little bit about your lifestyle in case he wants to make any limitations or changes.”

I looked at her and told her I don’t want to tell him anything. Because what if he ended up taking something away from me and I don’t want that. But I did and I told them what I do for fun.

I told him that I’m an endurance athlete. I race marathons, triathlons, and Iron Mans, and this is what I do for fun. And this is what I do to feed my soul. And his first reaction was, “It’s probably a good idea to give that stuff arrest for now until we figured this stuff out.”

I was ready to walk right out because I just didn’t think that that was the right approach or the right doc. But we talked through it some more.

That’s when we reached the middle agreement and said, “Again, if you’re feeling fatigued, I don’t want you to do anything. If you’re feeling good, you have some energy, then, go for it. So it was a little bit interesting.”

Navigating the conversation with your doctor

I think it comes down to this: if you are not your advocate, no one’s going to be your advocate.

You have to know what your passions are and you have to know what drives you,  what’s important to you. And if someone’s going to say to you, “don’t do any of that anymore while I figure this out,” it needs to be a conversation.

You need to remain true to yourself. You need to remain true to your own spirit and your own soul and figure out.

You should be able to say, “If you’re really telling me this, let’s understand why, and let’s figure out if there’s a middle ground.” And that’s what we ended up doing.

I understood where he’s coming from having. He didn’t know me. He was taking the ultra-conservative route but I’m not an ultra-conservative person. So I said, “Let’s align ourselves here and figure out what we can do.”

Fast forward many years after, at the time he thought I was completely out of my mind because of my lifestyle. But today, he’s a runner and he blames me for that.

Every time I go in for my appointment, one of the first things we talk about is how our runs have been going. 

»MORE: How to be a self-advocate as a patient

I just think it’s the coolest thing because we’ve both come full circle—I’ve become kind of a CLL expert, he’s become a little bit of an athlete, and that doesn’t happen every day. I think that was a cool exchange of whatever that we had.

Understanding your diagnosis

I made the mistake after that first appointment of going home, opening my laptop, and Googling CLL.

Another key piece of advice to never ever do is don’t just blindly Google your disease because for every one good resource website out there, there are going to be fifteen garbage ones.

That’s going to ultimately steer you down the wrong path and give you some wrong information and can really wreak havoc on your confidence and your psyche.

The first couple of hits that I came up with were memorial pages that were set up by loved ones who lost someone to CLL. That was my first foray into CLL.

So I closed the laptop and thought I was going to die. I walked away. I thought this isn’t going to be good.

After the fact, I said to him, “Can you give me some reputable sources? Can you give me some good links, some good organizations that I can stay connected with, that I can do my own research, my own homework, that I can understand more about my disease?” That’s a key takeaway for everybody.

You have to, you have to learn about it, but you can’t just do it blindly. You need to ask for trusted resources.

Managing “scanxiety”

A test is a test. It’s not always the be-all, end-all to anything.

You need to have those scans and tests to help paint the picture. It contributes to the information. It helps with the ultimate decision-making. It’s really important that they get evaluated appropriately, and properly by the right people, and discussions are had around those two.

In other words, if your PET scan showed this, let’s talk about that a little bit more. Feel free to say, “Tell me what you saw in that scan that was frightening or concerning, and what are some other possible things that might present that same type of concern.”

I also understand that at that point, I still thought everyone else was crazy. So I was just going through the motions, satisfying everyone else. And I thought at the end of the day, I would come back with getting an apology from everyone and say, “Oh my gosh, we’re so sorry to alarm you. Take two of these and you’ll be fine in a month.”

But that wasn’t the case. I think the big thing for me was having to take it in stride. You can’t overreact to any single test.

It’s just one piece of the puzzle. And it’s a puzzle that might have several different ways of coming together. You just need to maintain a sense of being open, a sense of positivity and a sense of hope.

Processing the news of cancer with the family

Dr. Shore had all the results right there in front of them. He ran through the different results saying conclusively, everything confirmed the same thing. That hunch that we had from the elevated white count from the ear, nose, and throat tonsillectomy guy—everything else painted a similar picture.

That’s when he said, “There’s little doubt that I was looking at anything other than chronic lymphocytic leukemia. This presents itself as a classic case of CLL for a number of reasons.”

And he talked about the size of the lymph nodes, the white count. Little did I know that I felt the tonsils, but the rest of my lymphatic system, like my spleen, was enlarged. All my unseen lymph nodes were also oversized. And my white count was up around 70 or 80,000.

It was what it was. You listen, you hear the plan, you hear the protocol.

And he said I’m welcome to talk to any number of other people, which I did. But I also didn’t want to waste time. So I moved ahead with his plan of treatment, at least, getting that stuff scheduled.

I then quickly ran home, reached out to some other folks, to a doc in the University of Pennsylvania, to another doc I knew and I was close friends with within the multi-sport triathlon world.

I sent them my results, talked about protocols, and standard care for CLL. Without even seeing them, I kind of rallied my team that way. And they were all on board with a diagnosis and the plan of attack.

»MORE: Breaking the news of a diagnosis to loved ones

Getting a second opinion

It’s hard to just give examples of when it might be warranted and when it might not be. But I would say, in most cases, it definitely warrants a second opinion.

As much as I love my doctor, he’s human. And I was meeting him for the first time. So there are good auto mechanics and there are bad auto mechanics.

There are physicians who might be really good at diagnosing this kind of thing. And there might be guys who are not. So it was critical that I had a conversation with multiple physicians

If the doctor has your best interest, first and foremost, and if the doctor is what he should be, he would embrace that. He would welcome that.

In fact, he would even help facilitate that and will potentially give you some names and some contacts for you to reach out to have that second opinion.

And if he’s really good, he’s not only going to help facilitate the conversation, you will allow those two physicians to get on the same page. And if it’s a matter of hashing something out medically, they will do that.

I had that happen personally. If my primary guy needs to recommend or refer something, he’ll say to me, “I don’t want him to do that until we talked to Dr. Porter who was in a totally different network but is very much an expert in this field. They would often bounce ideas off of one another in terms of my treatment and care.

1st Line Treatment

With a positive outlook, and by taking it moment by moment, Stephen was able to get through longer-term treatment, including two years of rituxan.

Undergoing Chemotherapy

What I learned was it’s a very cyclical process. And it builds a cumulative effect on your body.

I remember the first couple of days of treatment walking away thinking nothing. In fact, I felt so good early on in the first couple of days of each cycle that I would run home for my chemotherapy treatments.

And I did it for a number of reasons. It made me feel good. It made me feel physically and mentally good. I thought it showed my loved ones that I must be okay if I’m still doing the things that I love to do.

But as the week wore on and the toxins accumulated in my body, by that Thursday/Friday, I was pretty beat up. All it took was one cycle to realize that Monday, Tuesday, Wednesday are kind of scratch days; Thursday, Friday, I’m out. The weekends not great, but up by Monday, the following week, I’m not bad again.

So once I was able to digest that fact and I knew what was probably to be expected and I can predict and plan on that, I was able to do that.

I didn’t overthink the days. I felt bad because I knew I was going to rebound and I knew that it was cyclical.

And I also knew that they do such a great job of pre-treating with a number of different cocktails, supplements, and other things to help offset anything that you might be experiencing.

I think people have this image of a chemo suite as this dark dungeon of hell but I had the exact opposite experience. It was upbeat. It was positive.

The oncology nurses that I worked with were saints. They did everything humanly possible to keep my spirits up, to keep me feeling good physically, to make sure I didn’t need something to drink or eat.

It made all the difference in the world. I just had a pretty positive experience throughout the whole thing. I had my moments, but for the most part, it was good.

»MORE: Read other cancer patient experiences with chemotherapy

 Two years of Rituxan maintenance therapy

I knew about that. And truthfully, the idea was a little daunting for me in the beginning.

I could wrap my head around the initial four rounds of treatment. That seemed moderately tolerable for me to comprehend. But when I thought of two years of follow-up every six months, getting five more doses of toxin, that set me back a little bit.

That took some time to wrap my head around. But at the same time, I didn’t need to think about it until six months after I was done that last round.

I didn’t overthink it until it was time to go back in.

Truthfully, by that time, I felt great again. I was hundred percent of my own self again. I understood what the Rituxan was going to do and how I was going to respond and how my body would cycle through it. So I became okay with it.

You just have to be patient and just work through it and you’ll get there. You get through it.

The smiles on some of my pictures are not anomalies. That is pretty much the approach I tried to take throughout any treatment when I was in the chemo suite.

In fact, if the nurses didn’t see me smiling or making a joke about something, or if they saw a serious look on my face, they’d come over and they’d want to know what’s wrong.

That became an indicator that I might be tanking because I’m being serious. I tried to be as upbeat as I could throughout.

Long-term Treatment

He didn’t put a timeline on it, but he did say that this is going to buy us a whole lot of time.

If we’re really lucky, it’s going to buy us a whole lot of time, but it’s not going to buy us forever.

It’s a chronic condition that it’s incurable. There’s no known fix for it today. So at some point, we’re going to have to revisit it. But the hope and the goal were to be as definitive as we can with the initial sweep of therapy to really knock it way back, down, and off the radar as far as possible so that we don’t have to have this conversation again in the near future.

»MORE: Cancer patients share their treatment side effects

CLL Relapse

While staying focused and positive, and with the support of his family, Stephen confronts relapse and moves on from one treatment to another.

Follow up Protocol

Visits to Oncologist

I see my oncologist every three months for the last 15 years, as long as things were okay. But anytime there was, at least, a little bit of a hiccup, it could be a month. It could be six weeks when he’d say, “I want to check your blood again in one month, come back.”

Three months is what we hope for. It’s never any longer than that. I think every once in a while, I’ll bargain for four months.

He’ll joke with me when I leave. When he asks when do I want to come back, I’ll say, six months. And he’ll say, “Okay, I’ll see you in three.” It’s not a negotiation but he says it anyway.

Second Line Treatment

Steroids (dexamethasone or prednisone) were always the go-to bandaid when things would start to escalate a little bit. But not to the point of needing a full-blown treatment.

If the white count is elevated, or the lymph nodes are starting to flare up again, I’d take that. If we got some swelling, we’d do an MRI, and if we’re seeing some things but not worth going through putting the body through the full treatment, we’ll try to get a handle on it with some high doses of prednisone, or Decadron, on the interim basis.

And hopefully, that’ll knock it off the grid or, or just see how we do from there. I’ve been through several rounds of both of those drugs over time.

And I’ve developed a love-hate relationship with both of them; probably hate Decadron and love prednisone more, but that’s just me. The love-hate part is where I totally recognize the benefit and I see how well it works.

When I’m on Decadron for a couple of days, I’m awake throughout the night with enough energy to build a house. And then at some point during the day, I start to bunk and I don’t know what to do with myself. And then I’ll crash and I’m all mixed up. My cycles are mixed up. I get a little cranky. 

They all come with a price tag. But they work tremendously well. So you have to just accept the whole package. If you’re going to accept the treatment, you need to accept what comes along with it.

Dealing with Steroids

Stick with “eating chocolate.” And by that, I mean those things in life that make you feel really good and make your eyes roll and back your head, and you say that’s delicious.

Whatever that is for you, if it’s needlepoint, gardening, birdwatching, or running marathons, if you can keep up some level of something that makes you feel really good about yourself, that’s going to help offset any kind of emotional stress that any of this stuff is putting on you.

As far as the physical stuff goes, again, it’s a cycle. You’re going to stay awake.

One thing I learned very early on in my triathlon and marathon-running days is that you’re probably not going to sleep very well the night before a race.

It’s just a given. So stop putting pressure on yourself that you need to fall asleep immediately. You’re going to stare at the ceiling and you’re going to toss and turn.

It’s the same thing on Decadron. I’m not going to sleep tonight so I’m going to rest, have my feet up, and just relax. I will read and put on some relaxing music. I will do something that will help level me out, even if I don’t sleep soundly.

That’s typically the kind of rest that will, at least, get you through for a little while anyway.

Getting Through It for the Long-Term

It sounds like a negative thing that one has to get over. How about we flip it and say, “I’m fortunate enough to be tightly tethered to my oncologist that every three months I know the state of my health. Not everybody walking the planet can say that.”

That’s how I chose to view that. I’m safe. And if the doctor were to say to me that I should just come back next year, I would say, “Wait, what? No, I need to see you sooner than that because I need you to tell me that I’m okay.”

Addressing the Relapse

Symptoms started to reappear. Same types of problems—difficulty swallowing, swollen lymph nodes.

This time I was experiencing some night sweats, and other classic symptoms.

But he just didn’t want to venture down the same path because he felt like we had already gotten our money’s worth out of that previous treatment. There were so many other really good things in the pipeline and already in-flight that he wanted to venture down that road.

So he was the first person to bring up Bendeka.

Every appointment, we will talk about what’s in the pipeline. Like, “Have you heard about the next generation of this drug?” So I have a little bit of an understanding of some of the things that are coming.

When he said Bendeka is probably the next logical path, I had full faith in him at this point and I was willing to take the leap with him.

»MORE: Read more relapsed/refractory cancer stories

Undergoing Bendamustine Port Chemo

It wasn’t even a full year that I was on Bendeka. It was four-weekly cycles. We didn’t even get all the way through the fourth because my blood work overall had plummeted after about three and a half. So we ended up not finishing that fourth.

But I think in many cases that the fourth cycle is at the oncologist’s discretion. Based on what are the results, how the patient’s feeling, what we are seeing. And he had seen enough.

The results were pretty definitive that we’re getting the response we need. He said, “There’s no need to put you through this for another few sessions. Let’s just pull the plug now.”

I kept the port in for a couple of months while we made sure that it was gonna remain at bay, which it did for a few months. And then I was the first one to say, “Can we please take this thing out?” Because I was conscientious about it.

It doesn’t look exceptionally big, but you know, it’s there and it doesn’t belong there. It just made me feel kind of awkward.

»MORE: Read other cancer patient experiences with chemotherapy

My Chemo Port Story

I was on the operating table, having it removed. The same doctor who put it in took it out.

At the time I felt, “Hey, this little device that’s inside me was very powerful. It delivered what it needed to deliver and helped put me in a good place.” So I was in a mild twilight for this procedure. Just local anesthesia or some numbing on my chest.

As the doctor’s getting ready to go in, I said, “I have a favor. Can I have that when you take it out?” And he said, “What? You want your dirty port from inside your body?”

And I said, “I want to take it home and put it in my trophy cabinet. And he said, “There are strict hospital policies about that.” 

The next thing I know, as he’s finishing up, I hear him turn to one of the nurses in the room and said, “Would you please take this thing, go clean it up over there, put it in this vial, slide it under his sheet.” And he mums the word.

I have my port in my cabinet. I just thought there was another chapter of the story. When I can do little crazy things like that, it makes me feel as though I’m one step ahead of the disease, because I’m almost mocking it.

Having Support and Caregivers

It was critical. For me, it was important that I had loved ones nearby.

You might not get the same answer from everybody because some people just prefer to live this more privately. I’m not advocating anyone to go through it in a complete vacuum, a hundred percent by themselves.

But I’m one end of the spectrum.

I was very public about this. And I continued to be very public about it. I will climb to the highest mountain and preach about what I went through, how I did it, how we can advocate together, and how I can help others.

But then there are some people who will say, “Look, I just want to show up, get my treatment, go home, not talk about it.” And you have to be respectful of that, too.

I don’t think there’s any standard formula for how this all has to work. But I think it’s really important that everyone at least has someone that they can talk to.

Maybe it’s family, maybe it’s a professional. Maybe it’s a faceless person through one of the organizations that partner patients and mentors because then they become faceless and they can offer some advice and some help in that respect.

But again, everybody needs somebody, but to varying levels. No two people are on the same level.

»MORE: Join other patients and caregivers on The Patient Story social media community

What felt different: 1st vs 2nd Line Treatment

It felt different only that it was a different method.

I just feel like it was a different chapter of the story.

I don’t think my body necessarily felt any difference or responded differently. Maybe the whole routine became different, but I just thought that was part of the evolution of treatment.

This Bendeka wasn’t an option when I was diagnosed, then it was, so we moved on to that. And then at some point, we move onto the next thing and the time is right.

Targeted Therapy

Learning to value the here and now, Stephen lends his experiences and insights to getting ahead of his cancer, saying yes to a newer treatment, how he managed the side effects, and why he finds it so important to use his voice to help others.

Pursuing More Treatment

Even though I was living my thing, feeling good and all systems were normal and go again, I was still having those appointments every three months just to confirm that I’m okay. I needed it.

But my doctor and I have always had those conversations—about what’s next. Even if the topic of conversation isn’t, we would.

We’re going to have the conversation anyway because that’s just the way it is. That’s the nature of the beast with a disease like this.

My doctor said, “I’ve got several people or a lot of people on this. The practice has had great luck with it. I think if and when the time is right, that’s probably going to be what’s next for you. But I have to warn you, it’s a little pricey. So we’re going to have to work through all that if and when the time comes.”

That’s how we framed it for me. But it wasn’t until several months, a year, or maybe even longer before he said, “I think it’s time because symptoms have come back. CT scan revealed more lymph node movement from the prior and white count was on the climb.”

I look at it like this: you keep going to the same restaurant. And every time you go in there, there’s a new menu, which is pretty cool. It keeps things fresh and you’re not going to get sick of the same food because you’re looking at something different every time you go in there.

That’s been the options whenever I walk into the oncology office and I need treatment. Like, “What is the special of the day?”

And by day, I mean, what’s the protocol for this period of time? And at this time it was Imbruvica. That was the hot drug. And we took a shot at it.

It was probably the best thing we’ve ever done.

»MORE: Read more about ibrutinib and other patient experiences

Saying ‘yes’ to a new treatment

Going into it, at the back of my head, I’m thinking, I don’t know what this is going to feel like.

I read the potential side effects. As with any medication, like when you watch a TV, any ad that you see on TV, you’d hear the disclaimers and you think, “Oh my God, I’m never going to take that! The side effects are going to kill me before whatever I’m being treated for kills me.”

I was a little concerned about some of the side effects that I have read about but they were the standard cookie-cutter type. 

But I experienced basically none of them and I was extremely happy about it. I was able to maintain my lifestyle and keep going with what I was doing. It was literally a good call.

There was literally one small pill taken once in the morning.  There was only one other supplemental drug I would take with it called Allopurinol. And all that does is help the body rid some of the toxins that accumulate, similarly to a patient with gout or with some other disease where they need to rid the system of that stuff.

Now it’s three years in and it’s just been a very positive experience.

I filled the prescription right there in my oncologist’s office. I can run down to pick it up and run back home again, which gives the ultimate feeling of empowerment.

Okay, yeah, maybe I have leukemia. Maybe I had to go pick up my targeted therapy drug, but you know what, I’m kicking its butt because now I’m running home from picking out my drug. And now I’m just going to settle back into my lifestyle.

More Treatments on the Horizon

His hunch was by the time we need to have that conversation for real, whatever we talk about now, it’s going to be yesterday’s news. There’s going to be something else that’s more relevant.

I’ve done a lot of work aligned with leukemia and lymphoma society. So I see a lot of those announcements of things that have been passed and funding that has taken place.

I thank God every day that I am where I am at this point because there have been so many options available. Maybe you don’t have the solution that you need today but you’re going to have your solution. 

Every day that I’m not being treated or every day I’m in remission and not in need or not in a dire situation is me winning.

Six months, a year, or two years from now, you might have to go back into that same restaurant. But when you open that menu, you’ll be like, “oh my God, where all this stuff comes from?”

And that’s just going to be the way it is.

Things continue to evolve. Things get perfected.  Research gets better. Funding gets better. Solutions get better. It’s an okay time to have blood cancer from my perspective.

»MORE: Read more patient experiences with targeted therapy

Accessing New Targeted Therapy Drugs

When my doctor and I first started talking about Imbruvica, he did mention to me that it can be costly. But I was fortunate that the stars aligned in that by the time I really needed it.

It had become more mainstream. Insurances started to pick it up and it became the perfect storm for me. Essentially, it was fully covered by my insurance program.

But I also learned that if you’re on any kind of high-end, very expensive medication, many of the manufacturers themselves have different co-pay programs.

Typically, you’re not eligible if you’re on any kind of Medicaid or Medicare insurance. But if you’re on conventional insurance, whether it be subsidized through your work or private pay, there are organizations that facilitate these programs. 

You have to apply for it and meet certain criteria, but essentially you can be qualified for a copay plan of your medication, which I didn’t know existed.

I actually signed up for that with the urging of the team at my doctor’s office. They’re the ones who made me aware of it. They said, “We’re going to sign you up for this. And then we’re just going to wait and see, who’s going to offer the best coverage.”

We actually used that to now with my wife on a different medication. They’re offering the same thing but not oncology-related. Just search co-pay for that drug, and you will ultimately find it.

Dealing with the Side Effects

Don’t overthink what you read and communicate what’s real.

They have to give you a warning of what might happen. But that’s for a fractionally small amount of time in a very small population of patients. They just have to go on record. They have to document and publish them.

My doc said, “If you start feeling anything that makes you feel uncomfortable, come back to me and we’ll talk about it. We’ll figure out if it is temporary, long-term, or a showstopper. Is whatever you’re experiencing bad enough to pull the plug on this? Isn’t it worth it?” Because that possibility exists with anything.”

I think people are afraid to take a chance on a drug for fear of what might be without ever giving it a shot. What matters is how are you personally going to respond.

Again, no two patients are going to respond the same to any of this stuff. So give it a shot and see what happens. You can always redirect, go a different direction and call it off and then try something different.

»MORE: Cancer patients share their treatment side effects

How CLL impacted my life

I think it has changed me and it hasn’t changed me. 

How it hasn’t changed me is that I’ve been able to do exactly what we’re looking at right now. I’ve been able to continue with my lifestyle and continue doing the things that I love doing.

How it has changed me is looking at me crossing that finish line. And I cherish that just a little bit more.

I know and value the here and now.

I treasure the time spent with my wife, kids and grandkids. And I look at things through a happier lens. And I’ve always been optimistic, but this forces me to live it a little bit more.

It’s hard to explain but I felt ever more grateful for the little things in life. Whereas before, I would often think that I’ve got tomorrow, the next day or the next month.

I still have that. But the brutal reality is that we’re all mortal.

We’re never sure how many tomorrows, next month, or next year that we have. So it’s important that you really take care of the things you need to take care of in your here and now so that you can appreciate them. Then you can really just live in love at the moment.

Sharing my story through writing

I never set out with the intention of needing to write a book. What I set out with was needing a way to get the thoughts out of my head and out of my heart.

I needed to find a way to purge some things and keep myself fluid in what I was doing.

A lot of what you’re reading started as blog posts, where I would chronicle my day in treatment, or I would start with the beginning of my journey. And then I’ll throw in a random thought or a short story about something.

It was really just more for my benefit than anything. To get things out of my head and keep it as a creative outlet for me.

What I learned in the process was it helped a whole lot of other people because those who read it have really positive things to say. And I think it’s helped more people than I ever would have imagined possible.

That was never the goal. That was never my point.

In terms of advice or suggestions, this book fits into that category of “don’t let go of the things that make you feel good.”

In some cases, for me, that’s running, hopping on a bike and working out. But it’s also being reflective.

It’s putting your thoughts down on paper, or putting on headphones and getting lost on your favorite album or whatever it might be. It helped me as much as it has helped others.  And I am proud of it.

I mean, it’s a thing. I’ve got a few of them sitting in the bookcase.

I don’t expect everyone to go out and write a book. Some people might not want to talk to an actual person, but some people might be very good at writing their own thoughts down. So that might be their own support.

Maybe they go home after a tough day of chemo and they just want to chronicle their thoughts. Maybe when they first sit down, they’re feeling overwhelmed. But when they get done writing for a half-hour or an hour, they would feel a little lighter and better. And that was part of the process for me.

Finding my voice

I look at myself as a people-broker in life in general. There’s so many people out there doing all kinds of different things, and there’s so many commonalities in what they do. And sometimes it’s hard to put all the pieces together and to figure out who’s connected to whom.

That’s another reason why I put myself out there and that makes the oncology patient-caregiver community much stronger. What has happened by me doing that and by you (Stephanie) doing that is why we are having this conversation right now. You’re going to post this and it’s going to reach many people.

I won’t say it’s our obligation, but I think, it’s a real added benefit that we are able to improve the landscape just by living our life and story, which is pretty cool.

Inspired by Stephen's story?

Share your story, too!

Other CLL Patient Stories

Exhausted woman experiencing CLL symptoms.

Symptoms of CLL

Learn about how some of the common CLL symptoms first present themselves from patients who have been diagnosed with CLL.

Susan K. feature profile

Susan K.

Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatment: Venetoclax & obinutuzumab

Hannah D.

1st Symptoms: fatigue, high WBC

Treatment: Imbruvica, Venetoclax
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Jeff F.

1st Symptoms: Fatigue and night sweats

Treatment: Clinical trial of ofatumumab

Leesa T.

1st Symptoms: Bruising

Treatment: Imbruvica (ibrutinib),
Brukinsa (zanubrutinib)
Michele Nadeem-Baker

Michele N.

1st Symptoms: Slow healing, scalp infection, enlarged lymph nodes

Treatment: Clinical trial of ibrutinib, fludarabine, chlorambucil and rituximab; acalabrutinib
Tamsin W. feature

Tamsin W.

1st symptoms: Out of breath, dizzy, nauseated, tiredness, palpitations
Treatment: Obinutuzumab & venetoclax

Bill M.

1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen
Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37

Stephen B.

1st symptoms: difficulty swallowing and fatigue
Treatment: Rituxan, Bendamustine, targeted therapy BTK inhibitor (ibrutinib)

Sean R.

1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax

Lacey B.

1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R

Tony D.

1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Targeted therapy - orall pill (Imbruvica), takes 3 pills a night

Cancers Prostate Cancer

Theo’s Gleason Score 7 Prostate Cancer & Early Stage Kidney Cancer Story

Theo’s Gleason Score 7 Prostate Cancer & Early Stage Kidney Cancer Story

Theo shares his story of getting diagnosed with relapsed and metastatic prostate cancer, undergoing surgery, and radiation.

Having rampant cancer in his family and the African-American community, Theo lends a voice to advocate awareness, early diagnosis, and open conversations.

Explore his story below to hear all about his experience and very timely message. Thank you for sharing your story, Theo!
  • Name: Theo W.
  • Diagnosis (DX)
    • Prostate cancer
    • Early kidney cancer
  • Age at DX: 52 years old
  • 1st Symptoms
    • PCP, PSA of 72
  • Treatment
    • Surgery
    • Partial nephrectomy
    • Radiation

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Life outside Cancer

I’ve always adopted the mantra: You get to live a day at a time, and you get to choose how you live it. That’s really all we get.

I’m happily married to my wife of 42 years, Beth. We have three daughters. Leanne is the oldest. Randy is a middle child. She’ll tell you the dreaded middle child. Lauren is the youngest. We now have seven grandchildren.

I run a business in Akron, Ohio. My business is to manage money for people that are about to retire or are retired, make sure they have enough for the rest of their lives, and leave a legacy to some institution or some people.

Learning about prostate cancer

I have no symptoms of anything whatsoever. My doctor is also a dear friend of mine and who also happens to suffer from prostate cancer.

During my routine annual exam, he said, “Theo, your PSA is elevated. I’m going to refer you to a urologist.”

I went to the urologist. He got the results of a blood test. He asked me a few questions and said, “Let’s do another blood test in about three or four days.” We did another one, and my PSA rose again from 12 to 14 very quickly. So they did the biopsy.

I remember where I was and what I was doing when I got the phone call on a Saturday morning from my doctor at the Cleveland Clinic. Incidentally, my wife had been diagnosed with melanoma the day before.

We’re in the car, and I get the phone call. He says, “Theo, it’s prostate cancer. Let’s set up a time to talk. I want you to interview me, the surgeon, talk to a radiologist, and determine a plan of action.”

I think it was the following week that we went to the Cleveland Clinic. That began the process of my prostate cancer journey.

Getting diagnosed

It was 2003 when I had the first biopsy. That biopsy was inconclusive. It said I did not have prostate cancer.

But it was not the Cleveland Clinic then. It was a local hospital and doctor here in the Akron area, a local nephrologist. Knowing what I know now, there should have been some type of phone call. I left that doctor’s office, and there was no follow-up appointment of any kind.

Normally, I guess there should be a three-month or six-month routine biopsy scheduled. I missed a couple of years of getting my annual exam from my primary care physician. So when I went to the primary care physician, he said, “Your PSA is up in the 60, 70s range. You need to see a urologist.”

My doctor, my primary care physician, being a person that had prostate cancer himself and was able to keep his numbers low, possibly should have been more alarmed about it and said, “Get back there every six months.”

I was instructed by no one, and at that point, I didn’t know enough about the disease on my own to say get back in there every six months.

I was diagnosed in 2009 at 52. High end of intermediate risk and the low end of high risk. No staging. That’s with aggressiveness, and that’s pretty aggressive, especially at 52.

Family history of prostate cancer

No. My dad did not. His dad did not. My brother did not, and he’s an older brother. This came out of left field on us here.

Receiving the bad news

He looked at me and said, “Don’t panic.” He literally said, “Mine has been up close to 1,000.”

He took a new prime shot and took them the rest of his life, and his PSA remained low. He did not die from prostate cancer. He lived into his early 90s. 

I thought about two things. He’d always told me in my early 30s that I had an enlarged prostate. In my mind, I said, “Maybe that could be part of the PSA issue. No one is being really urgent about it, getting back in there after 2003.” 

I was hoping, so I said, “Maybe it’s just a high PSA because of that.” Of course, I was very nervous that it could be prostate cancer.

»MORE:Patients share how they processed a cancer diagnosis

Describe the biopsy

Be grateful that times have changed since my biopsy then. Currently, they give you a shot literally in the prostate that numbs it, and so it’s not painful. That was not the case with my biopsy. There was nothing.

I think they do three to four snippets per quarter. It’s in quadrants. By the time you hear the clip, it’s too late. It’s a very painful, uncomfortable but short procedure and process, which has changed now.

Getting the results

We got the call. The surprising thing is neither one of us broke into tears right away.

We ran a stoplight, actually, when I received the information. We looked at each other. I think one of us said, “What are the chances of both of us having cancer at the same time?” That’s how our relationship is. She tells me even to this day, “If cancer doesn’t kill you, I might.” That’s the kind of relationship we have.

We finished our errands. Of course, we kept the conversation going and talked about what the next steps may be and that we had to call the girls. They were naturally pretty devastated. The ones that were close to home came over as quickly as  they could.

We just started plotting out when and what. They were all for surgery. My whole family was. I quite frankly was not interested in surgery at all [and] wanted to do the radiation instead because it was less invasive.

At the end of the day, I never really had peace about it. I opted for the surgery.

Breaking the bad news to the family

It’s difficult as the process was literally to put everybody on speakerphone and called everyone.

We did joint calls with all of our close friends, our pastors, our family, and our parents. That really took a few days because at that point, there’s some crying on your own you’re doing. You’re physically exhausted, and you’re saying, “We’ve talked to eight people today, and let’s just pick this up tomorrow.”

»MORE: Breaking the news of a diagnosis to loved ones

Just make sure you talk directly to your closest friends, whether it’s phone or face to face. You do not want them to find out secondhand at all. They show up, and they go way beyond the call of duty to make sure you’re okay.

What support was most helpful?

You have to make the assumption that people want to help. I’m more of the person that is the helper and less likely to call and say, “Help.”

We would meet a group of guys at Einstein’s for breakfast. Leanne can tell you about this. She says, “I don’t believe you have 10 to 12 guys that meet every morning and just talk. No, guys don’t do that.”

Because I was at home with a catheter, I couldn’t get out. One friend says, “Is there anything I can do for you?” I said, “Yes. Go to Einstein’s, get me a cup of coffee and a bagel, bring them to my house, and sit with me and have breakfast.” That did as much for him as it did for me.

People just want to help. That story is an example of you needing your friends and your friends needing you. The opposite end, for kids, it could be scary.

Antonio, Leanne’s son, was five. He walked into the library and saw me in my bathroom, sitting there. I think Leanne had to tell him, “It’s okay to go over there and sit in his lap. He’s fine. He has cancer. Number one, he’s not going to get on you. Number two, he’s not fragile at this point. It’s perfectly okay to go sit in his lap.”

He was very cautious. With kids, when you see them, you need to tell them, “I’m okay. Come over here and give me a hug.”

Why was that an emotional moment for you?

I’ll tell you exactly why. “I want you to look at this chart.” He literally put his head down and wouldn’t look at me.

I took the chart, and I said, “Is this me right here?” He says, “Yes.” I said, “I’m at the high end of intermediate risk and the low end of high risk.” I said, “This is saying the average life expectancy is 11 years?” He says, “Yes.” I said, “Explain that to me.” He says, “Well, eight years will be great, two years you’ll be on hormones, and last year you’ll be miserable.”

The very first thing I thought was, “Antonio is five. Where will I be when he’s 16?” I did the calculations, and I said, “I’ll live long enough to see him turn 16 and get his driver’s license. If I make it that far, I’ll be fine.”

That was my first thought. Will he be driving? Will I get to see him drive? Will I get to see him become a 16-year-old?

Of course, we’re beyond that now, but that was my first thought when I calculated those numbers.

First of all, if they’re really close to you, you’re more forgiving.

Most times, people don’t need to say anything. Just an, ‘I’m sorry. I feel bad. I’m here for you. If there’s anything I can do, let me know. This is terrible. This is devastating. I don’t know what to say. I don’t know what to do. I feel horrible.’ Leave it at that, for the most part.

Treatment Decisions and Surgery

I have a very good friend in Chicago who incidentally was also going through prostate cancer. This gentleman was retired. I called him up.

He was at his vacation home. He said, “All the treatments are pretty much the same success level. If I were you, I would strongly consider radiation, because by the time you add up all the side effects, that one in your situation with your PSA number, that’s what you should do.”

Monday morning at eight o’clock, my cell phone rings. “Hi. I’m Dr…. head of urology at the Cleveland Clinic.”  

I said, “Well, doctor, he told me that you said radiation makes the most sense.” He goes, “No. I don’t think so. I think here at the clinic, you need to do surgery because if you do surgery and you have a relapse or recurrence, then we can do radiation.” He said, “We do a nerve-sparing surgery so you don’t have issues going down the road.”

Once I heard that, I said, ‘I don’t know where this is going, but I’d rather have more than one shot at it if this is not going to go well.’ That’s what I did. I did the surgery.

Fears with surgery

You’re always concerned about your sex life going forward. But a nerve-sparing surgery makes it more possible for a man to maintain an erection, to have sex. That’s a big concern for a lot of guys.

I did have one of my buddies tell me, “Hey, at the end of the day, your wife may prefer just a lot of cuddling, and you will be alive.” That was great advice. 

Cleveland Clinic made sure to tell me that. It was also one of the discussions that I had with the second opinion doctor. He kind of felt like if you went with the radiation, then you would have less issues later, and it would not affect your sex life now. That was his reason for it.

He says, “If we’re going to come up with the same success rate, then why impact your life in that way now?”

Then again, as I said before, for me, it was more important to do the surgery, and then the added bonus was when he said they could do the nerve-sparing. I said, well, okay, then that’s it. That makes it less of an issue.

Describe the surgery

My doctor said, “This is going to be a pretty routine surgery. We will be using robotics. That will help with less bleeding and a much quicker recovery.”

I am told that my father accosted him when he came out because the surgery ended up being about six or seven hours. It was substantially longer than it should have been, and my father just was not too happy about that.

He told me the recovery would be three to four days and I’d be out of there. He said, “You’ll have a catheter for several weeks. Come back, and we’ll take that out.”

He said, “You should be off and running, for the most part. You can start back to work in a month and a half or so.” He felt that the surgery would be pretty routine, with very few complications. That ended up not being totally true.

But you never know until you get in there. So I’m glad he did. Things took a little longer, the surgery and the recovery. Getting out of the hospital took longer than normal.

How long was the surgery?

Three to four hours.

He always talked about the nerve-sparing, and one of my seminal vesicles actually had cancer, so he had to remove that, and then the margins. When you do the surgery, you remove lymph nodes and they usually do a few, but they ended up doing 10 or 11 removals of those. That’s what took the time.

The recovery was supposed to be four to five days, but I stayed for eight days in the hospital.

How you were able to get through?

My issue was my creatinine levels were higher than they needed to be, and so they were worried about kidney function. It took a while to get those belts under control.

My advice is, if you’re in a hospital, you need to have your family guard how often people come and go.

They really have to look out for you in terms of your rest and be able to delicately say, “He’s glad you came to see him, but he really needs to sleep right now, because I’m sure you know you do not get any rest at the hospital.”

Every three to four hours, someone’s coming to do something to you, and so therefore the only time you get a rest is when you get out of the hospital.

They’re going in at all hours of the day and night, checking your blood pressure, checking all the different stuff you’re hooked up to.

Post-surgery care

One of my main issues is I could not pass gas. When I finally did, no one was in the room but me. I got my phone, and I text to my wife, “It’s a girl.”

She said she read it out loud and everybody knew what it meant, and everybody out there just erupted, and they want you to go. I tried prune juice, everything, and nothing worked. They said you cannot leave, and so that was the last thing I had to do before I left. After that, I went home.

Taking it lightly helps. You just have to.

I did have another kind of strange experience. There was one person that I have a temporary rift with. But sometimes when you’re sick, they feel a need to come around and try to fix it all before.

She told me that someone wanted to come, and my blood pressure went up. She had to kindly tell them no, and that’s difficult. But I will say people will come to see you for the right reasons, and people will come to see you for the wrong reasons.

»MORE: Read more patient experiences with surgery

Dealing with extended period of time at home

I think I ended up going two weeks longer than I should have, but I thought the catheter was great. You don’t have to get up to go to the bathroom, because you’re sore after surgery.

Every time I tried to lift myself off of a chair, it’s just painful. So with that, I didn’t have to get out of bed and go to the bathroom at night. I was reluctant to let it go, but I had to.

When I found out it didn’t come out the day it was supposed to, it quickly became irritating because I was mobile. I was in less pain, and now it became an inconvenience because I can’t go running around outside, although I did around the house. I was living in the country at the time.

The last week or so was really, really hard. “Just get this thing out.” Initially, it was very convenient.

I was supposed to have it for two weeks. I think I had it double that. If it was supposed to be a week, it was two. But I’m pretty sure it was close to a month that I had that catheter.

I have to just be careful of infection, just have to keep it clean. Other than that, I didn’t have any issues with it whatsoever.

Radiation therapy

First of all, I made a very dear friend in this process. I was going to my first radiation treatment, and I got out of my car in the parking deck. I’m about 6’7, and Black obviously, and there was this 5’7 White guy who got out of his car. We both went through the door out the deck.

We went to the building for cancer treatment. We got on the elevator. He said, “Are you following me?” I said, “It depends on where you’re going.”

He said, “I’m going to start my radiation treatment for cancer. You’re the last person I want because you should not be following me.” I said, “I actually am following you because that’s where I’m going, too.”

We’re dear friends up to this day. I had a buddy who got treatment sometimes around the same time.

It was treatments every day, Monday through Friday, for seven weeks.

At that point in time, my youngest daughter worked downtown near the clinic. She would just show up unannounced. I never knew what day she was coming, what day she wasn’t coming.

She wouldn’t tell me. She would show up, and I would be in there for probably 20 to 30 minutes. It wasn’t long. Out and back in the car, and back home or back to work.

It was an inconvenience from a travel standpoint, but there was a certain amount of comfort.

The hospital is about a half hour from my house. It was a highway drive mostly. It was a good time.

Until this day, I get comfort when I drive under the main campus of the Cleveland Clinic. Seven weeks out, you know you’re done, you ring the bell, and you just hope your PSA doesn’t climb.

Describe the process of radiation

For prostate cancer, you just get on the table. They put a tarp over you. You pull your pants down to your knees. You’re on this flatbed, and the radiation machine just goes around.

It actually tilts and goes around and hits specific areas that they’ve targeted and certain margins outside of where they think the prostate cancer may have spread to.

You see the same three or four nurses, so you develop relationships with them.

That’s really the process. You’re done, and you leave and go back to your life.

Side effects

I had no side effects until the last two weeks.

I would have some burning during urination. Women have urinary tract infections, so they may be used to that. 

That was my first experience. It gets to the point where you tell yourself you don’t want to drink water because you don’t want to have to go to the bathroom, but you have to.

You let them know, and then they give you things like pills you can take to help with that. They did work. It was very surprising when I first started, and I was very glad to take those pills after I got to.

The doctor did tell me that could happen. I was actually surprised that it took as long as it did and thought maybe it wouldn’t, but it did.

Outside of that, no burns, no rashes, no irritations of any type.

The issue with me was when they checked my PSA after the surgery, and it started to rise again. That’s evidence that I have a recurrence. We don’t know how far.

They looked at the surgery and said, “Let’s do an additional margin of X.” They feel they can go so far before they start affecting the lymph nodes. Once they affect the lymph nodes, then you have a whole different set of side effects.

The radiation itself was targeting a specific area with the idea of not having issues with your lymph nodes down the road.

Signs of recurrence

I think when it got up to about two was when they said, “Okay. Hey. We need to start doing something,” Because, at one point, it was almost undetectable right after the surgery. Then within two weeks, it started declining.

Addressing the recurrence

It was, “Hey. Let’s start every three months and see where this goes.”

Unfortunately, it went from two to four and from four to six, and then they said, ‘You’re going to be dealing with this the rest of your life. You need to talk to a medical oncologist.’

I went to his office, my wife and I. He reared his chair back and put up his cowboy boots on the desk, and he says, “Do you know why you’re here?” I said, “Yes. I have prostate cancer, and my PSA is still climbing.” 

He goes, “Do you understand that from now on, we’re monitoring this and that you are going to be dealing with this the rest of your life?” I reluctantly said, “I do.”

He started out, and he just wanted me to know the gravity of it. “We’re just going to be maintaining this for the rest of your life.” That’s when it really hit me.

When the doctor said, ‘You’ve got eight good years, two years of hormone treatments. Your last year is miserable.’ That’s when it hit me. I said, ‘This really could be me.’

Managing a chronic disease

That’s the case; it was a chronic disease. He told me what we would need to introduce, when, and what things they would use, and then went on through [to] talk to them about clinical trials.

He said, “For now, we’ll monitor it.” Then that’s what starts the CT scans, the bone scan once a year, and I’d heard about kidney cancer also. I was getting the chest X-rays, and then all ended up fine. So I’ve got to stop the checks.

2nd Cancer

Getting diagnosed with kidney cancer

I was diagnosed with kidney cancer five years after the radiation. They removed it, and of course, the concern is if it returns, it could spread to the lungs. So I have to do the scans, basically chest X-rays, because I was already getting a CT scan.

That kind of doubled for both the kidney issue and the prostate issue. I had to get the X-rays, and five years and that was done. That was totally successful, and I had a recurrence there. I’ve had some cysts on my kidneys that I didn’t know I had until then, and so they’ve watched them. That’s how they discovered it.

It was at a very early stage.

In fact, I had a colonoscopy and was out to dinner, getting ready to go to a Todd Rundgren concert. My side started hurting me, so off to emergency I went. Didn’t go to the concert.

They said, “You have cysts on your kidneys. That’s not why you have pain, though. You have pain from the gas that is stuck in your body from your colonoscopy. But you have cysts in your kidneys and probably want to get those watched.”

That’s when I started getting them washed, and not too long after that, they figured that it’s all the colon cancer and not the kidney cancer.

I had a PSA check every three months, every half a year, every six months a CT scan, and then every 12 to 18 months a bone scan. That’s just because they’re watching to make sure it doesn’t spread to the bones.

So far, it’s been all good.

PSA levels so far

It’s crazy. They continue to climb until 2019. It got to 52. Since 2019 it has gone up and down, which is really strange.

It sits at 57 now, so I called my doctor, because I was supposed to have a bone scan in December, and said, “I don’t see a bone scan on my chart. Shouldn’t I be having the bone scan about now?” He said, “Well, think about it. In 2019, your PSA was 52, and now it’s 57. Percentage-wise, there has been very little movement. I don’t see any reason to do one right now.”

There’s a couple of philosophies, and his philosophy is if hormone treatments after metastasis do not prolong your life any more than taking hormone treatments before metastasis, why subject yourself to the side effects?

That’s what we’ve done. I have not started hormone treatments at all, and they have not found any metastasis at all.

I did mention my dear friend, who I’ve met, the little 5’7 guy, and he’s a worrywart. He started his hormone treatments when he hit 10, and so it’s different for different people. I talked to him often, and he tells me, “Theo, I’d be a nervous wreck.”

I said, “I know you with time, and I’m glad you’re taking hormone treatments. It’s different, and the doctors are different. I have a different oncologist now than I did then — Dr. Timothy Gilligan. He’s a white gentleman, but he specializes in prostate cancer for African Americans.”

I really feel like I’ve got an individualized treatment plan that is geared towards the quality of life, according to the risks that the patient wants to take. You just have to say, ‘Hey, I don’t feel like taking any additional risks by not starting these hormonal treatments.’ I just don’t. I haven’t.

I think Lan said there’s a Dr. Pan. I can’t really recall the guy’s name, but he knows a doctor that’s out there at the City of Hope, and the previous doctor ended up taking a job somewhere else. Then I just got on the Cleveland Clinic website and fell upon his name and then called him and said, “Hey, I need you to come to be my doctor.”

Homeopathy and naturopathy

What supplements do you take?

I have a bunch of supplements that I take, but the real key is a machine called a HOCATT. It’s designed to get in there for about a half hour.

They shoot oxygen and carbonics into your nose, which drains you, but more importantly, they raise the temperature. It gets very hot, and the idea is it stimulates your white blood cells because it says my body has a fever. I need to run and attack anything that is suspect, and I get that.

I go every Friday at 2:30 or 3, what’s called my spa treatment at the end of every week.

They told me it will raise my PSA temporarily, so I don’t want to get my PSA check when I get out of this thing. Overall, it should slow down the process and give my body the best fighting chance that it has.

I also take vitamin D and fish oil.

Deciding on integrative treatment

I just did it and then told them, and fortunately, Cleveland Clinic is adopting some of that on their own at this point. He’s perfectly fine. There’s no, “Hey, you know what’s in these supplements? Do you know what you’re taking? Is this going to counteract what we’re trying to do here?”

No resistance, judgment, or anything of any kind from him at all. It’s been great.

When to start hormone therapy

For him, it’s just whenever the bone scan shows metastasis. It’s cut and dry with him. I did ask him a question. I didn’t want to ask him, “Doc, at what point in time are you pretty sure you’re going to find something?” But he said at 50.

The next time I see him after, I asked him. I’ve been over 50 for a while, especially if my next bone scan is clean. I said, “What does that say?” I don’t know what that says, but he says, “Most people were going to find something when they start getting a PSA of 50.” I’ve had scans since it’s been 50 in 2019.

Managing “scanxiety”

I don’t do very well with that one because of my charts. If I get my PSA checked today, I know I’m probably going to get an answer within 24 hours.

If I get up to go to the bathroom at 3:00 a.m., I’m checking my phone, and there’s a certain amount of anxiety. Once you do the password, I get an email that says ‘test results.’ That’s also stressful.

I had a very dear friend who died from prostate cancer. It was caught in the latest of late stages and did a lot of experimental stuff.

He told me the best advice I’ve had. He said, “You have to thoroughly enjoy the highs.” You’ll have the highs and you’ll have the lows. But you got to celebrate every high you’d get.

Whenever my PSA stays the same or goes down, I keep a chart. I look at that graph, and I look at how fast it goes. If it doubles in three months, you’re in trouble. I’m always looking at what rate is it doubling? Is it nine months? Is it 10 months? Is it a year? That affects me emotionally.

You don’t really want the information, but you do. It’s a mixed bag there. I don’t do a good job of handling that part of the anxiety.

»MORE: Patients describe dealing with scanxiety and waiting for results

Caregiver support and survivorship

You keep your plans and your dreams until you can. From a caregiver’s standpoint, being the guy messes with my wife’s security.

We do talk about that. Her statement now is, “You may end up living longer than me.” That could be true.

I don’t know. We don’t know. You have to have people, whether it’s a spouse or a good friend or both, that you really can talk about everything you’re feeling.

We’re both type A personalities to the point that if I get up in the middle of the night to go to the bathroom, I’ll come back and my pillow will be on the floor, and she’ll say “Go make some money.”

I’m like, “It’s 4:00 a.m. I can’t. Let me sleep for another hour or two.”

Humor has a lot to do with everything in terms of hightailing. Find somebody safe with whom you can express how you really feel and will let you express that.

I don’t get a lot of sympathy, and I don’t want a lot of sympathy. I don’t feel like I need it. There may be a time that I do.

Life is normal, because as long as you are able to, you still get to choose what you’re going to do and what your outlook on life is going to be in the end.

Some friends and I have a saying, “Your tombstone should have three dates on it, not two dates: the date you were born, the date you stopped living, and the date you died.” Hopefully, the last two will be the same day.

My wife has been the best thing for me. Because if I wanted to have a pity party, which I typically don’t, I couldn’t have one anyway.

Having children as support

Leanne and I are a lot alike, and we do things without really talking about it a lot.

She didn’t really tell me she was going to start doing the research. I found that out almost secondhand. That was the inspiration for it.

I remember when she was in prep school in high school and brought home straight A’s the first semesters as a freshman, and I asked her, “Do you feel any pressure to get straight A’s?” She said, “No. This is okay.” “Good. That’s all I want to know.” I’m floored.

She’s never been afraid of things. She likes the limelight. I’m just impressed by her all the time. I’m just, “Damn. She’s an impressive woman.” That’s why I’m proud of her, that she is on a mission.

Advocating in the community

We do now, but nobody talks about it until you get it. Then all of a sudden, out of the woodwork comes, “Well, I had prostate cancer three years ago.” “Well, I had prostate cancer four years ago.”

You’re walking around with all these guys, 3 out of 10, 80% African American, which have had it, and nobody knows anybody else has had it. Now there are support groups, that type of thing.

Not having it in my family, I was not that exposed to it.

Then having a doctor that had prostate cancer that was doing okay and died in his ’90s and not from prostate cancer. There just wasn’t as big of a fear of it, but then once I got it and you start looking around, you’re like, “Whoa, wait a minute, this is everywhere.”

At the Cleveland Clinic, they told me they had a kid in his late 20s, a Black kid that had prostate cancer. Do you start checking in your 20s? They say no. I learned about the process after I was already in it and the numbers after I was already in it.

Conversations in the Black community

Men generally, but especially men of color, don’t go to the doctor. A lot of them don’t. Some of it is because they don’t have insurance. Some of them are macho. Some of them fear the doctor. They don’t want a rectal exam.

I think getting out there, like getting your blood drawn. If you can do that, and you could start doing that when you’re 40, it’s going to save your life. I think the education process.

 You’ve got to look at the hand of the government with the Tuskegee issues, saying, “I don’t know if I can trust.” Which, by the way, is a whole other story with COVID, because I’m finding more middle- and upper-class white men not wanting to take it, which is strange to me.

A lot of my Black friends have gotten the shots. I’ve had my first shot. That’s a whole ‘nother story.

Just the lack of trust for doctors, the absence of African-American doctors.

Again, I’m 63 now, and so I’m talking for my age group. It may be different for people 20 years younger than me, but those are some of the reasons.

My mom to this day calls me when my dad goes to the doctor and asks me to go, because he does not want her in the room while he’s in there with a doctor.

The last two times, I told her, “Yes, that’s the macho thing.” It’s the “keep her in the dark” thing so if I get bad news, she doesn’t have to think about it.

I just convinced her, “You just barge in there and hear what the doctor has to say.” That’s what she’s doing now. She’s 91, and he’s 88. There’s just this fear of doctors.

What needs to change?

I asked Leanne about that at one point in time. Can’t some medical association or some medical say, “Hey, all the doctors in Summit County, and such, every African-American that comes in here, tell them that we have to do a blood test. We have to draw blood as part of your health. Not just for PSA.”

I don’t know if that’s an oversimplification, but it should be almost demanded that doctors do that for people that are at risk. Because that is the first step. It’s the least costly; it’s the least invasive. It’s the least threatening thing you could do that gives you the information you need to take care of yourself.

Prostate cancer is one of those cancers that are very treatable if you can catch it. My prostate and kidney cancer was that example. They caught it quickly, did it, and I’m done with it.

Cultural differences and doctor training

I think it’s a great conversation. The way that conversation in a perfect world should have gone is, “Theo, your PSA is at 14. That’s high. You are a candidate for getting prostate cancer. However, the success rate if we find it early is you basically get to live your life as if you never had it. As scary as this sounds, Theo, I need you to come back every three months. Do this so we can catch it and do something about it, and then you can have a normal life.”

I would have been scared to death walking around feeling I’m a walking prostate cancer. That’s a whole different psychology, but coming out on the other end of that with less risk at the end of life. That’s a difficult discussion that the doctor should have with the patient.

Opening the conversation of risks to kids and grand kids

I have not, but I will. I’m 62; 20 years puts me at 82 if I live that long. 17 put him at 37. I’ve done the math.

We’ll have the discussion before he’s a candidate for getting diagnosed with prostate cancer. Whether that’s him and I talking over an ice cream cone, or me telling him goodbye in his life. I feel there’s time, but having had this discussion with you, I’ll approach the subject with him now. Why not?

The critical part is you’re at a higher risk than most because I’ve had it. It is 100% curable if they catch it on time. Just stay in front of it. Promise me at 35-36, if not sooner, that you’ll get an annual exam. That if you do not hear from your doctor about a blood test by a certain age, you’ll ask for it.

Normalizing the conversation

We’re all interested in living as long as we can. Part of that is taking steps to assure that. One of the easiest things you could do is just go get an annual physical exam.

When you get one, ask for a blood test to find out what your PSA is. I don’t care what number they give you. You want to know that number today, more than you want to know that number tomorrow.

Diversity in clinical trials

I think I would try, and my doctor, Dr. Timothy Gilligan, that’s another thing. He is well on top of clinical trials and will suggest one at the appropriate time.

I am all for anything that could prolong and improve the quality of life.

With prostate cancer, chemotherapy does not. Chemotherapy with a lot of cancers is curative. I don’t feel that I would opt for that if they said, “We can give you three more months.” I’d rather have the quality of life.

Now, if I can go into his office and he tells me, “You have to start chemotherapy,” all bets may be off. I may be retracting everything [I’m] saying right now because, at the end of it, everybody wants to live as long as they can.

I’ve seen a few people elect not to get chemotherapy. I looked at them, and I said, “They went out the way they wanted to go out; they looked the way they wanted to look.”

I’m also concerned about what view will your grandchildren have of you before you die? What will you look like? I know that could be vain, but I am concerned about it because those imprints stay on your life for the rest of your life.

I think we should go online and look for doctors that talk about doing clinical trials and specialize in dealing with African-American prostate cancer. They’re out there. I had four that I was looking at, and that’s why I chose him.

All of us get a day at a time. Relationships are the most important thing in this world, period, and that’s it.

Inspired by Theo's story?

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Other Prostate Cancer Diagnosis Stories

Clarence S., Early Stage

Cancer Details: PSA levels fluctuated but were never extremely elevated, cancer contained to prostate
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment:Radical prostatectomy (surgery)

Steve R., Stage 2

Cancer Details: Started at stage 2 and gradually progressed to stage 3, and then to stage 4 with metastasis to lymph nodes
1st Symptoms: Rising PSA score
Treatment: IMRT (radiation therapy), brachytherapy, surgery, and lutetium-177

Al Roker, Gleason 7+, Aggressive

Cancer Details: Aggressive but caught early
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment: Radical prostatectomy (surgery)

Bruce M., Gleason 8/9, Stage 4A

Cancer Details: Staged Gleason 6/7 pre-surgery, post-surgery changed to 8/9, PSA level at 27
1st Symptoms: Urination changes, brother's prostate cancer diagnosis
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Casodex & Lupron)
Dennis Golden

Dennis G., Gleason 9 (Contained)

Cancer Details: Staged Gleason score 9
1st Symptoms: Urinating more frequently middle of night, slower urine flow
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Lupron)

Theo W., Prostate Cancer, low-end high-risk

Cancer details:
Low-end high-risk prostate cancer, early kidney cancer
1st Symptoms: PSA level of 72
Treatment: Surgery, radiation

Jeffrey P., Gleason Score 7

Cancer Details: Diagnosed at 59, biopsy had not detected it
1st Symptoms:None, routine PSA test, then IsoPSA test
Treatment:Laparoscopic prostatectomy
Mical R. feature profile

Mical R., Stage 2

Symptoms: No symptoms, caught at routine physical with PSA test
Treatments: Radical prostatectomy (surgery)

Mark K., Prostate Cancer, Stage 4

1st Symptoms: Inability to walk

Treatment: Chemotherapy, monthly injection for lungs
Paul shares his prostate cancer story

Prostate Cancer Series

Prostate cancer patient Paul discusses his cancer journey, including how he processed his diagnosis, his experience with hormone therapy treatment, how he found support, and his advice to other prostate cancer patients.

Hematology Medical Experts Myeloma Oncologist

Dr. Nina Shah, Multiple Myeloma

Nina Shah, MD

The Latest in Multiple Myeloma Treatment & Clinical Trials (2021)

Nina Shah, MD brings hope to multiple myeloma patients with news of standard of care trends and updates.

She lends here her expertise in managing multiple myeloma and experience improving patients’ quality of life.

Read Dr. Shah’s insights on the treatment decision-making process, patient and provider communication, and more.

Thank you, Dr. Shah, for the work you do and for sharing your incredible voice!


Introduction of you and your work

My name is Dr. Nina Shah and I’m a professor of clinical medicine at the University of California, San Francisco, or UCSF. That’s where I focus mainly on multiple myeloma clinically.

That’s what I see in my clinic, but on the inpatient side, we see everything including leukemia and lymphoma. I’m particularly interested in immunotherapy, as it relates to multiple myeloma and cellular therapy.

This would include things like chimeric antigen receptor T-cells, or CAR T-cells, as well as natural killer cells, dendritic cell vaccines, antibodies, and T-cell engagers. All those exciting immunotherapies that are coming down the line.

I also have a secondary interest in patient experience, including quality of life, patient-reported outcomes, and some life coaching applications that we’re trying to use to improve patient experience.

Understanding Multiple Myeloma

What is multiple myeloma in human terms?

Multiple myeloma is a cancer of a cell called plasma cell. A plasma cell is part of your immune system. Normally your immune system is made to fight viruses and bacteria and one of its soldiers is called a plasma cell.

Particularly, plasma cells are supposed to produce antibodies, which we’ve heard a lot about recently. COVID antibodies, antibodies to zoster, all these things. 

These antibodies are proteins that help you fight and tag bad things so your immune system can know to kill those things.

In the case of multiple myeloma, one of these plasma cells goes haywire. It grows out of proportion to the other cells, and that’s really the definition of cancer.

When one cell gets selfish and replicates its own clone, it takes up the resources of the other cells. That’s what happens in multiple myeloma.

One plasma cell grows and it starts taking up the space in the bone marrow. It starts producing a protein that eats the bone around it and that’s why people can have holes in their bones, or lytic lesions.

Then the protein that it produces—that antibody is now one antibody. It’s not a variety of antibodies. It’s just that one clone.

That’s why you will often hear the term monoclonal protein or monoclonal or clonal protein, M protein. That’s something that we can use to measure how many plasma cells there are.

It’s like the petals on the flower; the more petals you see around, the more you know they have flowers and that’s what we often use to measure in the blood.

The proteins that are produced from these cells can be in such high quantities that they also can have detrimental effects. That’s why some people with myeloma will say, “Well, my light chains were really up.”

That’s part of that M protein, those antibodies, and they can clog up the kidneys.

You hear about multiple myeloma as a disease that affects almost every part of the body—the bones, the kidneys, the blood system, and it all comes from having this one immune cell get a little out of whack. It’s supposed to help you, but in this case, it’s harming you.

What are the chances of it relapsing or being refractory

Unfortunately, multiple myeloma is considered an incurable disease, but it is a disease that one person can live with for a very long time.

We have patients who’ve lived 10, 15 years with it. It really depends on where that myeloma is going and what it’s like.

Sometimes we can predict that and sometimes we can’t, but on average, our standard myeloma patients are living longer than 10 years, at least, because we have new therapies.

What I tell all myeloma patients I meet is that, “You’ve been newly diagnosed and we’re starting therapy on you. We’re hoping that we can stretch out this time as long as possible so that we can have this first remission, meaning the first time you have a response that lasts as long as possible so that you don’t have to worry about it and you get back to your life and start being a person and not a patient.”

First Line Treatment

First line of myeloma treatment

For anybody who’s been newly diagnosed with multiple myeloma, it is very overwhelming because there’s a lot of information about what this disease is, then what is your life going to look like, what treatments are there and how can you predict what’s going to happen to you.

Those are all unknowns and if we had a crystal ball, of course we would be able to tell you as best as we could, but we often don’t know.

Combination (induction) therapy

What I usually tell the patients is that we’ll start off with some combination therapy. This is called induction therapy, and it’s usually a three-drug combination.

The backbone of that usually is some steroids, like dexamethasone, the drug everyone loves to hate, and then two other drugs. We usually combine those three drugs and we give them for three or four-week cycles. Those are pockets of time.

VRd induction therapy

There can be a variety of choices that we may give upfront, and this is really dependent on what the physician’s style is. The standard treatment is VRd, or Velcade or bortezomib (they’re the same thing), Revlimid or lenalidomide, and dexamethasone.

VRd side effects and management
  • bortezomib (Velcade) side effects: neuropathy or numbness in hands and feet
  • lenalidomide (Revlimid): fatigue, diarrhea
  • dexamethasone: energy level changes

The major side effects from the bortezomib or Velcade are potential neuropathy, or numbness, tingling, and a weird sensation in your hands and feet. A lot of times patients will say it’s worse at night.

We’ve tried to get around this by changing the dosing schedule and doing it weekly instead of twice weekly, although it was originally approved in a twice-weekly fashion. Sometimes, for older patients, we may reduce the dose.

The Revlimid often can make patients experience fatigue or diarrhea, but it’s generally well-tolerated when you do it upfront and when newly diagnosed. I would say more of the Revlimid symptoms happen after the transplant.

The dexamethasone can make you nutty. It’s like people are cleaning up their house all day long on the first day, and then on the second day, they crash. Their spouses now avoid the dexamethasone day.


There are other alternatives to the first one. Sometimes instead of using Velcade or bortezomib, we’ll use a drug called carfilzomib. This also works in the same mechanism of action, but has been studied in later lines. It’s also a very effective drug that has another side effect. It affects the blood pressure and has potential slight effects on the heart.

For example, if a patient comes to me and they’re healthy, except they have diabetes and they have really bad neuropathy from their diabetes, maybe a better choice for them would be the carfilzomib and not the bortezomib with Kyprolis and not Velcade, as their trade names.

That’s how we go about thinking about the side effects of these therapies.

High-dose chemotherapy and autologous stem cell transplant

After several cycles, if you’re healthy enough, we often would take you to a high-dose chemotherapy autologous transplant, or just transplant for short.

Stem cell transplant is what I would consider to be part of the standard of care for newly diagnosed multiple myeloma patients. You may not hear that from every doctor, but I like to do transplants.

The reason for that is that while those three drugs at the upfront, the Velcade, Revlimid, and dexamethasone, are like the soap and sponge for cleaning a dirty pot.

But the melphalan, which is the transplant drug, is the Brillo pad. It really digs in and gets the deep myeloma cells that you couldn’t get. It’s another way of being smarter than the myeloma.

This process involves two things. Since we can’t give you a very high dose of chemotherapy without damaging normal cells, before we even give that dose of chemotherapy, we have first to collect blood stem cells so that your blood will recover from having that dose of chemotherapy.

We always initially do a stem cell collection. This is an outpatient procedure and can take about a few days. We put a big catheter, usually in your chest wall, or a big IV in your arm. Then we take out a bunch of blood and filter out those stem cells after having given you some medication to get those to your blood.

Usually about a week for it between the injections and the procedure. Then after that, we do part two, which is the actual transplant. That’s when patients are, in our case, admitted to the hospital, although you can do it as an outpatient.

They get one dose of this chemotherapy. Two days later, they get replaced with those stem cells. We thaw them and give them just like a blood transfusion; it’s pretty anticlimactic.

For the next two weeks or so, these patients recover from these traditional chemotherapy yucky side effects:

  • nausea
  • vomiting
  • diarrhea
  • hair loss
  • infections.

Of course, they need transfusions because we’ve completely obliterated the blood system and we have to take time for those stem cells that we gave to come back and grow and repopulate. 

That’s the time that you’ll feel those traditional chemotherapy side effects that are less present with the newer Velcade, ReV/Dex.

Those are the new chemos, but this is like the old-school chemo. It does its job because we know that patients who get transplants early and get it upfront as a planned procedure actually do better as far as how long their disease is in control.

Maintenance therapy

After that people would generally go on to maintenance therapy, which right now is just one pill of low-dose lenalidomide, also known as Revlimid.

That pill and that factor can go on for five years or as long as they can tolerate the revlimid. It’s not always easy to tolerate it, but most of my patients can tolerate some of it.

You can go back to work, go back to having a life, go back to their family life. 

»MORE: Read more patient experiences with Revlimid (lenalidomide)

Shared Decision-Making

What to ask your hematologist 

As far as understanding what they should know and what they should ask their doctors, it’s important to know what kind of myeloma you have because you want to be able to follow your own labs.

Being able to follow your own labs when you get them is an empowering thing.

Sometimes it’s an anxiety-provoking thing, but I find in general it’s empowering because you and your doctor can have a really good conversation about trends and where things are going.

You feel like you’re really a part of the decision-making, which you always should be.

The second thing is that it’s important to know what your cytogenetics or FISH studies are. These are DNA characteristics of the myeloma cells and how those myeloma cells are prone to grow or not grow based on what we find in these studies. That can help us determine the risk. 

When we talk about risk, it’s how aggressive the myeloma really is, how likely it is to come back sooner than later. These are all parts of the discussion that are important to have with your doctor at the time.

There’s also other parts of discussion you want to have like supportive care. Other things you should be doing, for example, to make your bones stronger and to make you stronger to go through this process.

Higher risk versus standard risk

When we think about high risk versus standard risk in general, that means the malignancy is more aggressive.

In the case of multiple myeloma, high risk is defined by factors like a staging criteria. This staging criteria is called the revised ISS (international staging system). We use the beta 2 microglobulin and the DNA characteristics as well as LDH to determine. That’s a lab value that’s often overlooked, but is useful to help us figure out how myeloma cells like to grow.

Then there’s what we call cytogenetic risk. These are very specific findings in the DNA studies, you’ll see most commonly called cytogenetics or FISH. That’s a short term to talk about how these pieces of DNA look.

When we find things like 17p deletion, or deletion 17p, or translocations, that’s when two pieces of DNA break off and hook back up with each other. You may see that there’s a piece of 11 with a piece of 14 or a piece of chromosome 14 with a piece of chromosome 16.

We often see that there are some patterns of high-risk cytogenetic or FISH findings. Then we can say to the patient, “Your myeloma cells are getting a genetic signal that tells them to grow,” or, “They’re not getting a signal that tells them to stop growing.”

Then we know that those patients may have more aggressive disease. That’s what we talk about risk—either by disease burden or by what propensity or likelihood it is for these cells to grow.

Is it standard that doctors pursue these tests

Thankfully, we have grown a majority over the past 10 years and it’s almost always standard. In fact, I can’t remember the last time I didn’t have a bone marrow test that had this. At least FISH is sent, sometimes cytogenetics. They’re two sides of the coin. It is very critical that it is sent.

Even for patients who may have had a biopsy done, for example, on a bone in their back, because there was something that was biopsied by a neurosurgeon that turned out to be consistent with myeloma.

I still insist on FISH being run either on that specimen if it’s possible, or repeating with the bone marrow biopsy. It is so critical to get that DNA information.

Describe how you manage the treatment decision-making process with patients

It’s really important for the doctor and the patient to be partners in this process. It must also involve the caregivers because they’re part of the story too. 

What I do is I try to give the patient background information so they can understand the pathophysiology. It makes them understand what’s happening in their bodies. Then we talk about what to consider when picking one treatment over the other.

A lot of times treatment decisions are based on what the patient himself or herself looks like. Some people may have kidney dysfunction, some may be older and frailer. Some people may have preexisting conditions like diabetes, et cetera. This information helps us to understand what treatment will do the least harm.

Many of these treatments do equal good, but we want to do the least harm.

It’s really important for me to know a patient’s medical history and what are the symptoms that he or she has. I can understand what would be a good fit for treatments and I can explain that to the patient.

Oftentimes, the patient and I, having spoken about their symptoms and some of their medical history, can come to an agreement based on the choices.

It’s hard because sometimes you don’t want to ask for recommendations that you don’t plan on taking. But you should always feel free to do that because it’s our job to give you the choices that exist and make recommendations.

Ultimately, you have to be okay with the path going forward.

Newer Multiple Myeloma Treatments

Proteasome Inhibitors

It’s a very interesting thing that the proteasome inhibitors exist at all, because it’s one of the few times where you can take advantage of something going wrong in the cancer cell.

The myeloma cells—the plasma cells—love to make proteins. They make that one antibody which is a real problematic thing, but it is a way for us to measure it. Because of that, their protein machinery is on overdrive.

The proteasome inhibitors work by irritating the garbage disposal of fat protein machinery. That then makes the cell extremely mad and it makes it die because it can’t get rid of all its waste.

That’s why these proteasome inhibitors are particularly good for myeloma cells because those cells produce a lot of protein. You generally hear about these drugs specifically for multiple myeloma.

New CAR-T-cell therapy

This is the BCMA-directed CAR-T-cell therapy and idecabtagene vicleucel or ide-cel. The trade name is ABECMA. You can look at any of those, we call it bb2121. Everything has five names. 

It’s a way to take a patient’s own T-cells and genetically engineer them so that they will express a protein on the surface. That protein will specifically target a protein on the myeloma cell that’s called BCMA. It stands for B-cell maturation antigen and it happens to be a very specific protein that is on the surface of the myeloma cells.

These T-cells are engineered to recognize specifically that protein and those T-cells see the myeloma cells and they think, “Oh, you’re an infection, I better kill you.” That’s what they do. We take advantage of the T-cell ability to kill things that they consider foreign and these T-cells will bind to these BCMA plasma cells and kill them.

That’s what’s so exciting about it—it’s taking your own immune system and repurposing it to do its job of killing its myeloma cells.

This product was FDA-approved just this March of 2021. We’re very excited to start rolling in our clinic to make this available for patients as a standard of care after having received four prior lines of therapy.

Abecma side effects and management that you have to offer to patients and caregiver

Acutely, Cytokine Release Syndrome, or CRS, does happen and is like the worst flu you ever had. It’s appropriate because your T-cells are having a party with all the myeloma cells and that’s good. That means the T-cells are trying to fight the myeloma cells as they would any infection.

You do have fever and potentially lower blood pressure. Over 84% of patients had this in the pivotal trial, but very low grade, manageable with a drug called tocilizumab. It usually happens within the first day or so of getting these cells for Abecma. After that, it’s boring in the hospital thereafter, which is good.

There’s also an 18% chance of having neurotoxicity or confusion that’s also very treatable with steroids. After the first two weeks, it’s actually much better.

There is fatigue and some low blood counts, but we’ve just had an analysis of primary and secondary quality of life measures.

It showed that over time, going from time zero all the way to 6, 9, and 12 months, patients actually had improved quality of life with decreased pain and fatigue, and increased emotional and social functioning. This is very important in maintaining who you are, not just what you are as a patient.

Patient Response

The pivotal KarMMa study, which is the study that ultimately got this product approved, had patients with very heavily pre-treated myeloma. Median, so at least half the patients, had six prior lines of therapy. That’s a lot of therapy that people have had.

Usually, drugs get approved by the FDA for myeloma with a 30% response rate. That’s the bar, but here you have something with a 70% response rate and it’s actually upwards of over 80%, for the actual dose level that has been recommended to go forward. We think we can get 8 out of 10 people to respond, hopefully.

For those people, they can have a year without getting any therapy. Again, the progression pre-survival for most drugs with FDA approval in this setting is like two, three months. It’s not very long at all. To get 12 months a year without any other therapy is something that we’re looking forward to because our patients definitely want a break. They’d love to see our faces, but maybe not at the chemo suite.

This is something that is unprecedented, but we’re hoping that we can even improve upon this with future products.

Wave of Therapies

I think what we’re going to see now is this wave of T-cell therapy and immune therapy, which includes bispecific T-cell engagers (BiTEs). Those are like antibodies, but they engage T-cells and these are really exciting drugs.

Both of these are going through a lot more clinical trials. Although we have one product approved for T-cells, we have another one coming down the line, and we have to also alginate, which would be off-the-shelf T-cells, so patients don’t have to go through a T-cell collection. That will be coming down the line, not this year or next year, but soon.

In a concurrent way, we’re also going to have these T-cell engagers, which are not cell therapies. They’re actual drugs but they’re off-the-shelf drugs that can be given. The first dose or two needs to be given maybe in a hospital or monitored setting, but after that, it’s very well-tolerated. People will be able to receive this at their local oncologist’s office.

As we get more data for all of these drugs and understand safety and what’s best for treating patients, these will hopefully get FDA approved. There are already ongoing clinical trials to look at these agents, including the CAR-T cells in earlier lines of therapy, so we don’t have to wait for people to be on their fifth line of therapy to reap the benefits from this particular treatment.

Clinical trials enrollment process

If they want to set up a consultation, they can get to our new patient consult service and we try to see everybody within a week or two. Especially now with Zoom, it’s much easier. We can plug them in and we’re starting a queue now for people to get ready for this treatment.

At first, there will be a big line of people because we have people waiting and have been waiting for a year now, but we’re hoping that as 2021 rolls out, we’ll have a better way to space everybody.

Soon, we’ll be able to be in line as patients have relapsed disease, taking them and quickly getting them set up for Abecma.

»MORE:Learn more about the process of clinical trials from one program director

What is your message to the world and to patients

We are all limited by the same human things: time, cells, mutations, everything. I think this journey is one that has to be a journey of partnership between the provider and the patient. 

It’s not anyone talking to you. It should be you having a conversation with your provider. The more that each of you is educated—and I get plenty of education from my patients—helps us understand each other better and ultimately make a better integrated and informed decision for your care path going forward.

Thank you, Dr. Shah!

More Hematologist Interviews

Rafael Fonseca, MD

Role: Interim executive director, hematologist-oncologist
Focus: Multiple myeloma, new drug development
Institution: Mayo Clinic

Farrukh Awan, MD

Role:Hematologist-oncologist, associate professor
Focus:Leukemias, Lymphomas, BMT
Institution:UT Southwestern

Nina Shah, MD

Role: Hematologist-oncologist, researcher
Focus: Multiple Myeloma
Institution: University of California, San Francisco (UCSF)

Kerry Rogers, MD

Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), Hairy Cell Leukemia (HCL)
Institution: OSUCCC-The James

Tim Fenske, MD, MS

Role: Hematologist-Oncologist
Focus: chronic lymphocytic leukemia (CLL) & leukemia and lymphoma | CAR T, targeted therapy
Provider: Medical College of Wisconsin

Irene Ghobrial, MD

Role: Clinical investigator and professor of hematological oncology
Focus: Multiple myeloma, Waldenström’s Macroglobulinemia, early screening, clinical trials
Provider:Dana-Farber Cancer Institute (Boston)

Edmund Tai, M.D.

Role: General oncologist, hematologist
Focus: Specialist in treating Chinese-speaking patients
Provider: Sutter Health (Bay Area, CA)

Jacqueline Barrientos, MD

Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), lymphoma, 17p Deletion (Ibrutinib, Acalabrutinib, Venetoclax), IgHV mutation
Provider: Northwell Health (NYC)

James Berenson, MD

Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Institution: Berenson Cancer Center

CLL Hematology Medical Experts Oncologist

Dr. Kerry Rogers

Kerry Rogers, MD

On Latest CLL Research & Treatments

Kerry Rogers, MD shares the latest news and opinions on treatment options for CLL (chronic lymphocytic leukemia) patients.

Lending her vast expertise and research experience as an assistant professor in the Division of Hematology at The Ohio State University (OSUCCC – James), specializing in chronic lymphocytic leukemia (CLL) and hairy cell leukemia (HCL), Dr. Rogers sheds light on participating in clinical trials and the community’s efforts to move the mark in the standard of care.

Explore below for Dr. Rogers’ insights on everything from the latest in CLL treatment, decision making throughout treatment, importance, and prospects of clinical trials. Full written version below the video.

Introduction: Dr. Kerry Rogers

I currently live in Columbus, Ohio, and I’m from the Midwest, but I grew up in the Chicago area.

I have a guinea pig, and I like college football. That’s huge at the Ohio State University, but I did my residency at the University of Michigan.

Don’t tell anyone, but I went to Northwestern for an undergrad, so that’s really my football team. That’s just a bit of me.

I work at The James (OSUCCC), and I enjoy taking care of people with chronic lymphocytic leukemia (CLL) and hairy cell leukemia (HCL).

My major interest academically is on improving targeted agents for the treatment of both these diseases.

Chronic Lymphocytic Leukemia (CLL)

What is CLL

Chronic lymphocytic leukemia or CLL is a blood cancer. It’s a cancer of cells called B lymphocytes. Don’t ask me why they’re called B lymphocytes! Those are white blood cells or immune system cells that have turned into cancer cells at some point over their lifespans.

They can go anywhere in the body that the blood goes to—you can find them in the bone marrow, lymph nodes, liver, and spleen, and in the blood, because it’s leukemia.

You can make a CLL diagnosis when there’s a certain number of these leukemic white blood cells or CLL cells in the blood. You can diagnose it with a blood test, and the most common way these days that people come to be diagnosed with CLL is when their white blood count appears too high and then goes through blood tests.

Many people diagnosed have no symptoms whatsoever and are sometimes somewhat confused about going to the cancer hospital to meet with me.

When thinking about CLL, it’s also important to realize that this is the most prevalent adult leukemia, meaning more adults live with CLL than any other type of leukemia.

People with CLL can expect to live a very long time, including their natural lifespan, and not everyone needs treatment. Because of that, it’s imperative to think about how well people are going to live with their CLL.

Categories and Stages of CLL

Unlike solid tumors like breast cancer or lung cancer, where the staging is based on how far it’s spread in the body, and if it’s left the site where it developed, which could mean the patient is in big trouble, we stage these blood cancers differently. Since they go over where the blood goes, which is everywhere, we can’t use the same basis.

In the United States, the most common staging for CLL is called Rai Staging. It was developed by Dr. Rai, a very nice man if you ever get the chance to meet him.

Rai Staging
  • Stage 0: CLL cells are in the blood
  • Stage 1: CLL cells are in large lymph nodes
  • Stage 2: An enlarged liver or spleen from CLL
  • Stages3 & 4: CLL cells are on the bone marrow that has caused people to have low hemoglobin, be anemic, or have a low platelet count from the CLL
How is CLL staged?

It’s staged simply by physical exam and looking at blood counts, and many people don’t need a bone marrow biopsy for staging. Some people need it to know why people’s blood counts are low, but it’s not always necessary.

The other part was the main forms of CLL and if there’s a slow-growing or a fast-growing type.

Everybody’s a little bit different. You’ll see some people diagnosed with CLL, and they’ve had it longer than I’ve been a doctor, and they’re doing fine with it. Their white count is the same as it has been for the last couple of decades.

But there are people whose CLL isn’t moving very fast at all. Then, some were diagnosed 18 months ago, and their white count has gone from 15 to 200 over that time.

Tests for CLL

The course of the disease can be quite different in many cases, and there are some tests that we can do to help better estimate if it’s going to be a slower or faster-growing CLL.

IgHV mutational status

One of those tests is called IgHV mutational status, or immunoglobulin heavy chain gene mutational status, where unmutated usually means a faster-growing, higher risk CLL.

I’d like to think of mutated as a special, low-risk slow-growing CLL, and that’s mutating your immunoglobulin as a normal process in B cells. This just says whether or not the CLL cells did that before they turned into leukemia cells. 

FISH test for CLL

Some other tests that can help include FISH panel testing, which is just a fancy way to look at chromosomes in the CLL cells, not like the ones you pass onto your kid.

Things like deletion of the short arm of chromosome 17 or deletion of 17p can mean that we’d expect the CLL to be faster-growing, and deletion of 13q, which is part of the 13th chromosome, predicts slow-growing.

We can use a combination of these factors to guess how someone’s CLL will do.

Of course, sometimes we’re surprised. Sometimes, it looks like it will be slow-growing and it’s not, or people with some high-risk features really have an extended course but their CLL isn’t causing them any issues.

CLL in layman’s terms

One thing that really helps people that’s not necessarily fancy is knowing how to look at your own blood counts.

People get these complete blood counts all the time, and you’ll see your white blood cell (WBC) count, hemoglobin, platelets, and then below that, you’ll see a differential that tells you what type of white blood cells those are.

You always want to look at the lymphocyte count, because the CLL cells are counted under lymphocytes.

The other testing is something you do just on the leukemia cells.

It’s always very important to ask if this testing is done and what the results are so that you can know more about your CLL.

It helps you predict how much trouble you might have from the CLL in the future, the time before needing treatment, help in selecting a better course of treatment, how many treatments you might need in your lifespan, or if, at some point, a clinical trial might be appropriate for you.

The major ones are the IgHV and CLL FISH panel, which stands for fluorescence in situ hybridization. It is a chromosome analysis where they look at all the chromosomes because people with three or more changes in their chromosomes actually predict a higher risk of CLL.

They can expect to have more treatment and more difficulty with it in their lifetime. People with normal karyotype, like normal chromosomes, actually expect to have less difficulty. 

»MORE: Hear from CLL specialist, Dr. Jacqueline Barrientos

Standard CLL Treatment

Shifting Away from Chemotherapy

First, it’s important to realize that the median age that people are diagnosed with CLL is in the mid-60s or almost 70. There’s a lot of older people who might have other health conditions.

It’s always important to think about what other health conditions someone has when planning treatment.

It has been a goal in the field of CLL medicine for a long time to make sure that some treatments are appropriate even for older people in their 80’s or even 90’s with other health conditions.

But here, I’m going to talk about more of the chemotherapy for younger, fit people because I think it’ll be easier to understand in that setting.

We’ve always had some chemotherapies that could lower the white count or improve symptoms. But the mark was moved on how long people are living with CLL or survival by combinations of chemotherapies with an antibody medication called rituximab.

Fludarabine, cyclophosphamide, rituximab (FCR)

The last several decades before my time working in CLL were spent developing a regimen called FCR (fludarabine, cyclophosphamide, and rituximab). Rituximab is the antibody and the other two are chemotherapies.

Bendamustine and rituximab

There’s a similar regimen you can use in people who might be slightly less able to tolerate chemotherapy called bendamustine and rituximab. These are highly effective chemotherapies that could be given to most reasonably healthy people and can control the CLL for years.

Targeted Therapy

ibrutinib and venetoclax

It’s important to know that as a first treatment, our new targeted agents, like ibrutinib and venetoclax-based treatments, were compared to these chemotherapies and had longer progression-free survival. This is a measure of how long people are alive without their leukemia returning.

We have found that these targeted agents were actually better than these chemotherapies.

That means people lived longer without their CLL coming back after they took the non-chemotherapy targeted agents. Also, they have a different group of side effects that are generally better than chemotherapy.

»MORE: Read more about ibrutinib and other patient experiences

Choosing between Chemotherapy and Targeted Therapy

Some people choose to get chemotherapy because it’s different from these targeted agents, or they might have a health condition that makes the targeted agents inappropriate.

These days, the vast majority of CLL patients should be receiving treatment with a targeted agent and not with chemotherapy.

It’s very uncommon that you’d have to use chemotherapy to treat CLL. The one exception to that is young fit patients. IgHV mutated people and don’t have a high-risk feature such as deletion 17p can have 10 years or more of being alive with no detectable leukemia after getting FCR.

A group of younger people fit for chemotherapy treatment are those mutated and don’t have deletion 17p, called a TP53 mutation. But they might choose to get FCR because it might actually cure them.

I don’t know what else to call 10 years of being alive without detectable leukemia. We don’t usually say CLL is curable, but this is the one case where it might be.

However, there’s a lot of risks to doing FCR, like getting a different type of leukemia called acute myeloid leukemia (AML). That happens down the road due to bone marrow damage from FCR.

That is the one case where it could be very important to offer chemotherapy, especially to young healthy people that might want to do a treatment course of about six months and then potentially never need treatment again in their lifespan.

It’s not a guarantee that they’ll never have leukemia come back, but that is the one case where it’s important to think about it. But for the vast majority of other people, targeted agents are safer and more effective.

How long have the targeted agents been in use

The BTK inhibitors were developed in the last decade, and venetoclax shortly on the heels of that. When things are through phase III studies, that’s when they start being prescribed more commonly.

We—the academic centers—get to use all these drugs and people that come see us here might benefit from taking them as a participant in a clinical trial.

I’ve seen many people who did really well doing a research study to get a newer drug that later became approved. This becomes more widely available and used by general practice, hematologists, oncologists after phase III studies.

Continuous novel agent therapy vs. time-limited

For previously treated or relapsed refractory CLL once, it’s been about five years. In 2018, we had those randomized phase III studies comparing ibrutinib regimens to FCR or BR reported that ibrutinib had a longer progression-free survival, which is, again, being alive without leukemia. That really put those in very widespread use.

There is some resistance to it just because you have to take the pills for a long time. You take them indefinitely until either leukemia comes back while you’re taking them, you develop a side effect and have to stop taking them, or you have some other health condition that you have to stop.

In younger patients, compared to FCR, ibrutinib even had a survival advantage, meaning you’re more likely to be alive if you took the pills instead of FCR.

When you explain to them that, yes, it is not the first choice, most people decide that that’s better than something that has a shorter progression-free survival or doesn’t work as well.

Most people are more comfortable taking pills long term when they find out that it works better than chemotherapy.

In both people who have taken a treatment before or selecting a first treatment, there are two major standard of care options outside of a clinical trial.

Although I think participating in clinical trials is always something to consider if you can do it. I’ve seen a lot of people benefit from that. You won’t get a placebo without knowing that’s an option. From where I work, we have zero CLL trials with a placebo.

Treatment for relapsed/refractory (R/R) CLL

The two standard options are both highly effective. If patients haven’t taken either class of drugs, they’re both excellent, and you can pick based on preferences and side effects.

BTK inhibitors

There are BTK inhibitors, which are pills that target a protein called BTK. This blocks a cell signaling pathway called B cell receptor signaling. This makes the CLL cells not behave like CLL cells and die off over time.

The two main BTK inhibitors that are approved for CLL are ibrutinib and acalabrutinib. Ibrutinib is a once-daily pill. Acalabrutinib is more selective and targets pure things that ibrutinib does. It is a twice-daily pill. 

Ibrutinib and acalabrutinib are both excellent options. They’re usually given by themselves, although they can be given with an antibody medication in some cases.


The other option is another oral targeted agent called venetoclax. It inhibits a protein called Bcl-2, which is an anti-cell death protein. If you block an anti-cell death protein, that’s like a double negative, and it kills the CLL cells really fast.

The problem with this drug is that it has to be started slowly so people can be monitored. It can work so quickly that it can cause tumor lysis syndrome. It is usually given with an antibody and requires monitoring. 

Venetoclax treatments are given in a shorter duration. If people are taking it as a first treatment, you give it with an antibody called obinutuzumab and take it for one year. If you’re giving it after people have already gotten treatment, you usually give it with an antibody called rituximab, and you take it for two years.

It’s whether or not they’ve taken treatment before it determines whether or not you take venetoclax for one or two years.

Venetoclax vs. BTK inhibitors

Venetoclax is like a time-limited treatment versus BTK inhibitors, which you take indefinitely till they stop working or you develop side effects and have to quit.

Some people have very strong feelings about if they want to take something and just get it done and stop, or if they’re just fine adding another pill to their pillbox. They don’t want to bother with antibody infusions. They just want to take some pills and go back to working or golfing or whatever it is they want to do.

Both are usually tolerable for the majority of patients. The ones who take long-term, obviously, for some patients have more chronic side effects.

Targeted Therapy Side Effects

Both these treatments are so effective, if you’ve never taken venetoclax or BTK inhibitors before, you can really pick based on your preference for treatment duration, and what side effects may or may not matter for your other health conditions.

btk inhibitors side effects

The main side effects of BTK inhibitors are:

  • Bleeding
  • Bruising
  • Cardiovascular side effects
  • Increase in blood pressure – high blood pressure can increase the risk for things like heart attacks and strokes. Overall, it can decrease cardiovascular health.
  • Abnormal heart rhythm called atrial fibrillation, or a-fib. A-fib is usually not life-threatening but is very irritating to deal with.

In addition, it can sometimes cause:

  • Joint aches or pains
  • Inflammatory arthritis
  • Diarrhea
  • Heartburn
  • Rashes – those usually go away or are less of a problem

Most people find the side effects from the BTK inhibitors tolerable, so they still go about their life with these things.

But for someone that has atrial fibrillation or is taking several blood pressure medications already, this might not be the best idea. People with bleeding disorders or who need warfarin anticoagulation don’t want to take this class of drugs if they have options.

Venetoclax side effects

Venetoclax, on the other hand, can cause tumor lysis syndrome at the start.  All the CLL cells die so quickly it releases toxins into the blood. That’s treatable, but if you don’t watch out, it can be life-threatening or fatal.

You actually have to start the dose low and increase it slowly. People take a low dose, and over five weeks, they increase the dose every week to get to the full dose of venetoclax, which is 400 milligrams. They have to come for at least two days in a row for blood tests or monitor tumor lysis syndrome every time.

»MORE: Cancer patients share their treatment side effects

With this monitoring scheme, it’s very safe, and people developing tumor lysis syndrome can get that treated usually with medications. Things seem to go very well for people, but it’s a lot of hassle to do that.

To protect people from tumor lysis syndrome, they have to stay hydrated. People who have heart failure, take diuretics or have kidney impairment, which could make tumor lysis syndrome more common and more dangerous, might not want to go this path just because that’s a greater risk to their health.

Once people are at the target or treatment dose of venetoclax, it actually seems to have fewer chronic side effects than the BTK inhibitors. Some of them include diarrhea, lower neutrophil count or neutropenia (neutrophils are infection-fighting cells).

People can sit down and look at their health conditions. If they have severe kidney impairment, they probably want to take a BTK inhibitor. If they have abnormal heart rhythm problems, they would want to take the Venetoclax.

It’s a decision you make together with your treating physician.

I sometimes see patients considering their options for first treatment who ask me right off the bat, “Which one should I do?”

I say, “I don’t know, we just met. I need to ask you some things about you, and then I can tell you what you might want.”

I think these are really important, and the discussion is very similar for people picking a treatment that has taken before but never taken either of these classes of drugs before.

»MORE:Learn more about the process of clinical trials from one program director

Clinical Trials

Triple Therapy (Ibrutinib, Venetoclax, Obinutuzumab)

We always like to make treatment safer and better for our patients. So we had a study combining the BTK inhibitor ibrutinib, venetoclax, and an antibody, obinutuzumab, as a treatment for one year.  It’s ongoing in follow-up, but everyone in this study has completed treatment.

When you give more drugs together, you get more side effects. It’s not a surprise, but the nice thing about this is it’s one year, and now we’re seeing how long people remain in remission at the end of that one year of treatment.

So far, we’re at about three years of follow-up, and it looks very good.

We’ve treated people with both relapsed/refractory CLL and people taking this as a first treatment. Several other studies are going on for BTK inhibitor and venetoclax combinations. We expect the response rates to be very high, but we are excited to know how long people remain in remission with this.

We hope to learn with longer follow-up who might most benefit from this combination and who’s going to stay in remission longer than with other things.

I’m just super excited that we really move the mark and get regimens into the standard of care in CLL and are able to do a randomized phase III trial, where you sign people to treatment in your treatment.

Again, there’s no placebo here, and usually, you know which one you’re getting to, after you randomize. You don’t know when you sign up, but you know before you get treated.

There are two ongoing studies, one through the Eastern Cooperative Oncology Group, or ECoG, and one through the Alliance. Those are both US Oncology Cooperative groups that do studies conducted on hundreds of sites across the US. They are both randomizing patients to ibrutinib and obinutuzumab.

You take the antibody for a limited time, but the ibrutinib indefinitely, and then the three-drug combination, ibrutinib, venetoclax and obinutuzumab given for a fixed duration. You don’t take it forever, and they’re looking at progression-free survival.

One study is for younger individuals, one’s for older individuals. They have a few small differences, but that’s mainly what they’re looking at.

»MORE:Read more on FDA approvals of clinical trials

I am excited to see over the next several years how that turns out, and I’ve also treated several people in that study who were really excited to participate in it.

You have to emotionally think it’s okay to be randomized, but a lot of people thought it was fun. They were like, “Oh, great, I’m going to get one of two great things, and I don’t have to pick.” 

Metrics for these studies

When you pick a new standard, you compare standard treatment, which in this case is ibrutinib and obinutuzumab, to an investigational treatment, which is that three-drug combination.

The main goal is to determine progression-free survival: how long people are alive without leukemia and if one’s longer or shorter than the other. That’s a measure of how effective these things are.

Some studies use the overall response rate, but these drugs are so effective that they don’t really work out CLL because everyone responds to these things, which is great, by the way.

Then, when we look at the patients in the study who had high-risk features, low-risk features. Then we see how our high-risk patients did compared to high-risk patients with the other treatment. 

For ibrutinib, some people have their leukemia come back while they’re still taking it.

Determining resistance to treatment

We have some neat studies going on at our institution and some other institutions across the country, looking at how we can identify who’s developing resistance to ibrutinib before they actually get sick.

We can look at mutations in BTK, which is the protein that binds at the drug binding target. Once people develop mutations in BTK, in particular spurts, we know that the drug will stop working.

We’ve offered them clinical trials to add a second drug like venetoclax to reduce this resistance and see if we can keep the leukemia from relapsing and be healthy for longer.

The CLL Community is looking at adding a second drug to people who are on ibrutinib and doing well. Remember, I said that ibrutinib, and actually, acalabrutinib II, which is the other BTK inhibitor, changed the way the CLL cells work and behave, but it doesn’t actually kill them off.

Lots of people still have CLL floating around, which is why we think they need to keep taking those drugs. We’re wondering if people can have another drug added to it to just knock out those residual leukemia cells. That way, they can be in off-treatment remission. If you do that, then they won’t be on it long enough to get resistance ideally.

Importance of clinical trials

It’s always good to know what your standard options are, and what your clinical trial options are.

For people who haven’t taken BTK inhibitors or venetoclax, those are good standard options. For people who are resistant to both those, usually clinical trials are your best option.

You always want to know what drug is being studied, how the study is going, who’s been in it, and what your doctor expects from the study.

Misconceptions about clinical trials and “placebos”

In cancer trials, you would know there was a placebo because you have to sign a consent saying there’s a placebo. But it’s usually considered unethical to give people who need cancer treatment a placebo.

It will explain if it’s randomized and what are the treatments that you would be getting. A lot of studies, especially the ones we have, are studying very new treatments. Sometimes they’re studying the dose of the drug.

You should know exactly what drugs you’re getting. It can feel really weird but you should consider your options.

With the state of cancer research these days, we actually have a very good feeling that these drugs are going to help patients before we give them to patients. Many of them have been studied obviously in the lab using CLL cells; cell lines have been studied in animal models of CLL.

We don’t start trials with new drugs until we’re fairly confident that it will help people. I’ve seen many patients benefit from drugs that they wouldn’t be able to get just because they’re not yet approved.

If anyone’s considering it and unsure if they have someone they know in the CLL community or peer support for someone that’s been in a clinical trial, it’s always good to talk with people who have done it just because the individual benefit to doing something like that can be significant.

People always tell me, “Oh, I feel like I’m your guinea pig.” I’m like, “Oh, you should be so lucky to be my Guinea pig, you know what that thing’s lifestyle is?” I was like, “My personal guinea pig is not an experimental animal. It’s my pet, has a super nice lifestyle. People would love to be my guinea pig.” 

But really, people aren’t guinea pigs as much as you think. If you’re considering a research study, make sure you get to ask all the questions about what the drug is and why being in this study might benefit you or others, and your doctor should be able to answer those questions for you.

Up and Coming New Treatments

CAR T cell therapy

CAR T-cell is exciting. It’s still investigational for CLL, but I’ve seen it help a subset of patients, especially those that are resistant to these drugs I’ve been talking about. It can be very powerful for select people, but it is a hassle to do, and it is still investigational.

For people who have very good, other treatment choices, it’s usually not something we run to as a first treatment or even a second treatment. But it can be great for people that need that.

Reversible BTK inhibitors

The things that I’m excited about are some drugs that are hopefully going to move up to benefit more patients. We’re always trying to make treatment safer, more effective.

There’s reversible BTK inhibitors. Ibrutinib and acalabrutinib bind BTK at the same site and bind it irreversibly, meaning forever.

Reversible BTK inhibitors bind at different sites than the two approved ones and bind and unbind BTK, which seems to limit some of the side effects.

Also, for some reason, these drugs can work in people who are resistant to the BTK inhibitors, which you expect ’cause they bind to it at a different site but can work in people resistant to BTK inhibitors and Venetoclax. They seem to be very well tolerated.

A reversible BTK inhibitor such as LOXO-305 (pirtobrutinib) is now under study. LOXO-305 is the one that’s the furthest in development, and they just gave it a direct name.

It’s just exciting when I go to professional meetings to see what new types of drugs are being developed in CLL or things like cyclin-dependent kinase inhibitors that are coming back into play. These drugs, either alone or in combination, are likely to benefit patients.

Again, we keep moving the mark more and more towards safe, highly effective treatment, and it just keeps getting better.

New drugs with new mechanisms, drugs with the same mechanism but in a different way—these are the way we move the mark in CLL.

It seems to have fewer side effects, not no side effects. Anyone that tells you there’s are no side effects is lying. You never get anything for free or don’t do anything. But, that, and also because the mechanism is different from the irreversible BTK inhibitors, it can be used in resistance.

If someone takes ibrutnib until their leukemia comes back while they’re taking it, taking acalabrutinib isn’t going to work because they have the same mechanism. But taking a drug that binds the same protein but with a different way of doing it can work after your resistance.

This allows people to take two BTK inhibitors before moving on to a drug like Venetoclax or other treatment options. They’re just really effective, especially in people with really resistant CLL. It’s not just that there are fewer side effects, but also they seem to work great, which is awesome.

Treatments for Hairy Cell Leukemia (HCL)

Hairy cell leukemia vs. chronic lymphocytic leukemia

I love talking about hairy cell leukemia, which is another chronic B-cell leukemia. It also has very long survival rates, but it has some different features than CLL.

Unlike CLL, it’s very rare. It’s not very common to have people diagnosed with hairy cell leukemia.

HCL Treatments
Purine analogue chemotherapy

Over the last couple of decades, purine analogue chemotherapy was developed for hairy cell, and it’s actually spectacularly effective for the majority of patients.

People can take a single course of purine analogues and be in remission for decades sometimes. But there’s a group of hairy cell leukemia patients who don’t get decades of remission from purine analogues, or aren’t able to take them for other reasons such as side effects.

New drugs (cladribine, pentostatin, vemurafenib)

The hairy cell community has been working on new drugs for this group of hairy cell leukemia patients who aren’t expected to benefit from purine analogues like cladribine or pentostatin.

There are a couple of drugs in this area that are available and FDA-approved for people. But vemurafenib, which is not approved for hairy cell leukemia, has been very well studied. It can be used in people with hairy cell leukemia with a BRAF mutation which is found in the majority of people with classic hairy cell leukemia.

But there’s still a need for new drugs for this group of patients as those drugs don’t cover everybody.

We have actually conducted a phase two study of ibrutinib. It’s been FDA-approved for four different cancers. We’ve studied it in hairy cell leukemia, in a group of patients who aren’t expected to benefit from purine analogues.

People who have been previously treated or people with a variant of hairy cell leukemia have been found to have a very long progression-free survival. Around 73% of people are alive for three years without their leukemia returning. 

The response rates don’t look quite as high, but that’s probably the response criteria we were using. You can really see how many people benefited by looking at progression-free survival.

It’s definitely a really important treatment option for people with this rare leukemia that aren’t expected to benefit from therapies like Purine analogues.

I think we published those results in a journal called Blood recently so that other doctors could find them and think about using that for their patients with a hairy cell that might need something beyond purine analogues.

Prognosis and findings so far

The prognosis for hairy cell, in general, is quite good. Most people can expect to finish their natural life span. Some people die of infection and rarely will someone die of leukemia. 

Before purine analogues, survival was actually expected to be a couple of years, and not a couple of decades. When people don’t benefit from purine analogues, usually, they take more treatments, and their lifespan can be shortened by this. It’s still possible depending on what treatments you get to live for years.

It’s not like people had a very, very short survival, but certainly not the decades you’d expect from people that really get a lot of benefit from purine analogues, and other treatments like vemurafenib which is usually given for a fixed duration. Their relapse-free survival, or roughly how long it is before the leukemia returns in the majority of patients, is less than two years.

With this ibrutnib study, people are still alive without their leukemia returning for three years. Almost three-quarters of them are really quite good.

The study has been open since 2013. Some people have been in it a really long time, and I look forward to continuing to see how it benefits those patients. Some people are obviously quite sick and had taken 8 or 10 treatments before being in the study and probably wouldn’t be doing very well if they hadn’t been in a research study.

It’s also a nice example of how participating in a clinical trial can benefit people, because folks with hairy cell leukemia would not have had access to this if they didn’t decide to be in a research study.

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