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

When Cherylinn was diagnosed with stage 4 mantle cell lymphoma (MCL) in 2005, she was told it was terminal. She decided to fight anyway.

Read her incredible story of undergoing chemotherapy, 2 relapses, and thyroid cancer while also earning 3 degrees and being a single parent.

Thank you for sharing your story with us, Cherylinn!

• Name: Cherylinn N.
• 1st Symptoms:
  • No initial symptoms
• Diagnosis:
  • Non-Hodgkin’s lymphoma
  • Subtype: Mantle cell lymphoma (MCL)
• Stage: 4
• Treatment:
  • R-CHOP chemotherapy
  • Stem cell transplant
  • Ibrutinib
  • Rituximab
  • Clinical trial

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

1st Symptoms and MCL Diagnosis

Introduction

Tell me about yourself

I’m retired from City of Hope. Now I’m just at home. I have a Great Dane who’s my partner, and she and I do a lot of things. We go walking and try to get healthy, and I love to read. I used to have a lot of books, and then I found that I had tons of Rubbermaid containers with books. I got into the Kindle, and so now I have hundreds of books in my Kindle, but that’s what I like to enjoy. 

There are some mountains in Los Angeles, where I live. It’s nice sometimes to sit on the deck when it’s really nice and just have my Kindle or maybe a glass of wine, some music and just enjoy reading. 

I volunteer for the Leukemia & Lymphoma Society (LLS), and I enjoy doing that. I talk to people who call in that are newly diagnosed with cancer and just give them some insight. My philosophy is that if I can make one person not fear cancer as a death sentence — that it’s something that you can get past — then I’ve done my job. I try to help people to withstand cancer. I tell them all the educational and financial programs. There’s a lot to LLS, and that’s why I’ve been volunteering with them since 2007.

After a freak accident sent you to the hospital, what happened and what tests were run?

The paramedics and the hospital said, “Go see your primary doctor afterward.” It was when I saw my primary doctor that she said, “You haven’t had a physical or a mammogram.” I had a sister who had passed away from breast cancer, so she said, “You are due for a mammogram.” 

Now that I’ve gone through this, what am I going to do to cure it?

“Okay, fine,” I thought. I didn’t think anything of it. I felt healthy. I’m overweight, but that’s pretty much the only symptom that I had. They did the physical when they did the mammogram. A couple of days later, she said there was something on the mammogram. 

They did an ultrasound. I assumed it was breast cancer. They were doing the ultrasound but under my armpit. I was kind of worried about that. Then within that same week, they said, “No, we’re going to do a biopsy.” It was during that biopsy that they discovered that it was mantle cell lymphoma.

At what point did you realize something serious was happening?

It was so fast. One day I’m having the ultrasound. Two days later I’m having a biopsy. Then all of a sudden, it’s like, “By the way, you have cancer.” But again, I was assuming that I had breast cancer, and my sister was such a strong person that she always made me feel like you can get through this. That’s why she was my role model. 

I was like, “Okay, I have cancer. I will see the doctor, and I’ll deal with it. I’ll do whatever I need to do and then go from there.” I had the “Why me?” and the crying and the anger, but it was more of, “Okay, now that I’ve gone through this, what am I going to do to cure it?”

MCL Diagnosis

Testing and waiting for results

They put me under because they did the biopsy on both sides and took out lymph nodes. They just said it was a biopsy. That’s why all along I thought it was breast cancer.

I received the results probably within a week. I was close to my 50th birthday. Ironically, the day that they did the biopsy, my kids were giving me a surprise birthday party with family and friends. I’m the kind of person that when I have to go to chemo and stuff, I just go by myself. I don’t bother anybody. 

I thought the biopsy was just go in, get the biopsy and go home, and so my kids had planned that party for that night. I was in the hospital, and they were like, “You can’t have this.” 

I was like, “Well, it’s okay. I’ll be fine.” It worked out okay. Then the following week is when they actually told me that it was cancer. When I saw the oncologist, that’s when he told me that it was mantle cell. 

Then he said it was stage 4 and I was terminal. For me, terminal was my sister, who was maybe 80 pounds. You look like a living skeleton. That was terminal. I was looking at myself and saying, “How could I be terminal?” 

He just said, “You’re terminal. We’re just going to make you comfortable.” I had been newly divorced after 26 years of marriage, and I had 2 children at home. My daughter was 14, and my son was 17.

How did you break the news to your children?

I made dinner. I have 3 children, 2 boys and a girl. My eldest son was married. He’s actually a paramedic. I had them all come to the house, and I just told them. I said they found cancer and that I’m going to try to go through treatment. 

My daughter was 9 years old when my sister died, and she and I were very, very close. I didn’t realize that she had a memory of seeing my sister like that. When I said it was cancer, the first thing my daughter asked was if I going to look like my sister, like Auntie Pat. Like I said, my sister and I had talked a lot. I decided I was going to be very truthful, and I just said I didn’t know but that we would get through it.

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

Being honest with children

There was an incident where the paramedics took my uncle to the hospital. My daughter had asked a paramedic, “Are you going to bring him back?” The paramedic said, “He’ll come back.” He died in the hospital. 

When the paramedics came for my aunt, it turned out it was the same paramedic, and it was like 2 years later. My daughter said, “Are you going to make her come back?” He said, “Oh, yeah, she’ll come back.” S he told him, “You’re a liar because you took my uncle, and he didn’t come back.” 

I told him, and then he realized it was the same house. I said, “You have to be very careful what you tell children, because they remember.” I didn’t want to tell my daughter, “Yes, I’m going to be fine,” and then what if I passed away?

When did you find out it was mantle cell lymphoma?

He was an older doctor. When I went back in after they had done all the PET scans, the bone marrow and all the tests, they told me that he had left. He had to leave on emergency medical leave. 

They had this young doctor from UCLA who was going to see me. I saw him, and I asked him, “How long do I have? 3 months? 6 months? What do I have?”

He looked at me and said, “Lift up your left leg.” 

“What?” 

“Lift up your left leg.” So I lifted my leg. Of course, if your doctor tells you to do something, you do it. He said, “I don’t see an expiration date.” 

“What?” 

He said, “I don’t see an expiration.” 

I said, “Really, doc?” 

He said, “I don’t believe in it. When it’s your time, it’s your time.” 

»MORE: Patients share how they processed a cancer diagnosis

Chemotherapy and Side Effects

Treating with 2 forms of chemo

Then the doctor said, “Now, I will tell you, the person in this chart is as bad as it gets. You’re stage 4. It’s in your entire body, and it’s also in your bones. But I’m looking at you, and I can’t see it.” With that, he said, “Do you want to fight?” 

I said, “Yes, I’m going to fight.”

He said, “I want to treat both cancers at the same time. Normally we would take care of the mantle cell first and then the bone cancer, but if the bone cancer goes to your brain, all bets are off.” 

Like I said, I had no symptoms. The only symptom I had is I was always tired. I decided that I wanted to fight. When I started the aggressive chemo, the second day, they would go to radiology. 

They would take the spinal fluid out of my spine and then inject the chemo directly into my spine. I did both chemos at the same time. It was really painful because I had to stand up and hold on while they drew the fluid and then put the chemo in.

What were the side effects from R-CHOP?

It was the typical side effects: you lose your hair, you can’t eat, you throw up. I had some butterscotch hard candy. For some reason, my body accepted the butterscotch candies. My son was at the market, and he found some butterscotch pudding. 

He bought it just to see, and it turned out that my body could accept it and wouldn’t throw it back up. When I was in the hospital, I would always have my butterscotch pudding. If you can find that one thing that your body can tolerate, maybe that’s just what you need to help you.

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

Hair loss

At Thanksgiving, I was cooking, and all of a sudden a whole chunk of my hair came out. It was like my realization. My head used to itch a lot and burn. When that happened, I actually put a shower cap on because I didn’t want it to go in the food. Then I went to a barber. 

It was kind of strange because this was 2005. Women being bald was not usual. I said, “I need you to shave me.”

He said, “Oh, you want your hair really short?”

“No, I need you to shave it,” I said. He questioned it, and then I just pulled my hair. Then he saw, so he shaved my head. It itched really bad, so it was easier just to shave my head at that point. 

I was okay with being bald. My daughter was going into high school. I had a wig, but I would only wear it in front of people or her friends and stuff like that when I had to go out. Most of the time, I would just stay bald.

»MORE: Cancer patients share their treatment side effects

The emotional toll of being bald

I’ve been bald 3 times. This last time that I got the cancer, I asked the doctor about the chemo. I asked her, “Will I be bald again?”

She said, “Cherylinn, it’s just hair.”

What you don’t understand is for a woman, hair is important. For me, even though I’m okay with being bald, being part of a woman is having hair. She said she didn’t know, and luckily I didn’t lose my hair.

If there’s dishes in the sink, just let there be dishes in the sink. As women, we want to just do supermom things. When you’re going through treatment, you can’t.

I’ve been bald 3 times, so I understand. That’s why sometimes when I see ladies that are bald, I wonder if they are going through treatment or if it is now because women are bald. You see it all the time, so it’s not that big of a thing.

Sometimes when you know somebody is going through treatment, it’s like a sisterhood. Sometimes I wish I could just put my arm around them and say, “I understand.” I don’t want to go into their space, but I understand what they’re going through.

»MORE: Patients describe dealing with hair loss during cancer treatment

Going into remission

I went into remission about the fourth month of R-CHOP. It was like, “Okay, good, we can stop this.”

My doctor said, “No, you have to do the whole 6 months.” So I did, and I was okay. It was just standard. I was sick. 

Being a single parent, when I would come home from the hospital, I’d see dishes and laundry. The first 1 or 2 times, I started going back to mom mode where I was cleaning the kitchen, wanting to go to the market, do washing and all that. 

I ended up in the hospital because my counts went really low. I had to learn that I have to accept that I can’t be supermom. If there’s dishes in the sink, just let there be dishes in the sink. As women, we want to just do supermom things. When you’re going through treatment, you can’t.

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

Testing

Thyroid cancer in 2010

I had an endocrinologist as well because I had Hashimoto. When they did the CT scan, they found that I had thyroid cancer. That was in 2010. They just took out my thyroid and 3 of my nodules, and that was it.

Relapse in 2014

An MRI scan showed that I had nerve damage on my right arm. It turned out my neck was degenerating, and I wondered if it was related to the bone cancer. The doctor said he didn’t know. He didn’t think it was. It was just my neck degenerating. 

They ended up putting a titanium rod in my neck. Unfortunately, there were some complications during the surgery because it was a 2-part surgery, and they weren’t able to do the second part. I just had the titanium rods put in my neck, and that helped. 

I was able to get all the feeling back in my right hand, with the exception of my thumb. My thumb still feels like it’s numb, like it’s asleep, but it’s there.

They did a mammogram. At first, when the radiologist had said there was a spot on my right breast, she didn’t want them to do a biopsy because she said, “Mantle cell doesn’t go in the breast.” But he was really adamant about wanting to do the biopsy. 

We did the biopsy, and then it turned out to be the mantle cell. It was a surprise for me. I’ve been told that it was an aggressive cancer. I always knew in the back of my mind that it was going to come back sometime. 

Of course, I went to see what my options were. At that time is when she told me that FDA approved a pill chemo, which was the ibrutinib. She wanted to put me on that, and so I did that.

»MORE: Read more about ibrutinib and other patient experiences

Treatment and Side Effects

Choosing a treatment option you can still work while taking

We were looking at all the different options. Rituxan had always had a really positive effect on me in regards to my treatment. She recommended this new drug that was available. 

With my history, she was confident that would be the route to go, and it would also allow me to continue to work. That was one of the things, too. I wanted something that I might be able to still work on. She said that was a good one and that I would be able to. It was a pill. I could take it in the morning, and then I would be able to go to work.

Because I’m a single parent, it’s very important for me to continue to work to provide for my children. My daughter was still going to private school, and my son was still living at home because he was helping to take care of me. He was going to junior college, and I wanted him to be able to go to college. Being able to provide and work was very important for me. 

I knew with the Rituxan, I would be able to maybe continue working, but it would mean that 1 day a week I would have to go get treatment. Normally, the next day you’re usually tired, so it’d be like 2 days a week I would be out. When she said that ibrutinib was an option where I could take pills and that I would be able to continue to work, that was a factor.

»MORE: Patients talk about working during cancer treatment

Starting ibrutinib and switching to Rituxan

I worked for City of Hope, and I’m a patient with City of Hope. Because I worked for chairmen, I knew a lot of the doctors. One of the doctors, the provost, is Dr. Rosen. He’s also on the board of directors for the Leukemia & Lymphoma Society. 

I asked the secretary if I could talk to him as a second opinion. I went to go talk to him, and I explained to him about my side effects. I was concerned about working and having the side effects, and he was the one that recommended maybe I should change drugs. He’s the one that said he would talk to my oncologist. He asked me what I had taken before, and I told him that Rituxan had worked. 

Getting a second opinion

When he went to talk to my oncologist, that scared me, too. One of the things is making sure that if people don’t feel comfortable, get a second opinion and don’t feel bad getting a second opinion. When I asked him and he went to go talk to my oncologist, I felt like she was going to be really offended that I got a second opinion. 

She told me something that was very interesting. She said, “If they’re a good doctor, if they’re conscious of their patient, they shouldn’t be offended that you want a second opinion.”

I said, “I’m so sorry. I didn’t mean to go over.”

She said, “No, no, no, it’s okay, Cherylinn, because if you’re not doing well and this works, let’s go ahead and put you back on it.” 

That’s one of the things that I liked about City of Hope and my doctors. We talked. They listened to you. We ended up changing treatment, taking me off that and putting me back on Rituxan. By the third treatment, I was back on Rituxan.

Discussing potential side effects of ibrutinib

I don’t remember too much. I know we discussed potential side effects, but I think at the time, it was more of, “Let’s just give it a month or 2 and see if it’s maybe just initially in your body, and that’s why your body is reacting to it.” By the second month, I was having the same symptoms, and that’s when I was concerned.

Low immunoglobulin (IgG) counts

I always call Rituxan my go-to chemo medicine, because for some reason I was able to tolerate it, and it seemed to work for me. I just have a low IgG.

It seemed like every 3 months, I would know my counts. I knew my counts were low when I would get a cold sore either on my top lip or inside my mouth, or I’d find bruising where I knew I hadn’t hit myself. I would know my counts were low, and I would just call my doctor and say, “Hey, I think my counts are low. I need to have a blood test.” Sure enough, they were low, and then she would schedule me. 

My counts were low every 3 months, it seemed. It got to be where we just knew to set me up for an infusion. It just seemed like for as long as I can remember, like maybe 2010, every 3 months I would have to go to get the immune globulin intravenous (IGIV). 

I called it my tune-up. It’s just like your car. You have to go in and have your tune-up. You make the car run well. It’s like I go in, and they plug me in.  

Like I said, I was lucky enough that I worked for City of Hope. I would work in the morning, and then I’d go that afternoon to have the treatment, and then I’d be back to work the next day. I was fortunate enough that I worked for City of Hope, so I was able to do that.

Remaining Positive Through Relapse

The importance of positive thinking

Honestly, from the get go, I always thought it’s your attitude. I’ve read that with cancer or any illness, you accept it. Your attitude toward it is, “Okay, I have this, I’m going to fight it,” or “I’m going to deal with it or my treatment.” 

Sometimes I think maybe it was like a guardian angel.

I think when you talk to people that are diabetics, it becomes part of their lives. Then it’s just your attitude. If you think, “Oh my God, I have to do this again,” then you’ve already put yourself in that position where you’re dreading it.

I don’t. It’s like, “Okay, I got to do this.” It’s like getting up to go to work every day. I got to get up. Okay, 3 hours I’m going to have to be plugged into this machine. I can look at the TV. I can read my Kindle. There are options. I can relax.

Relapse in 2022

It was in my right leg and my left groin. That was ironic because when they did the PET scan, that was only supposed to be from my neck to my torso. For some reason, it went past into my legs. Sometimes I think maybe it was like a guardian angel where they were like, “Let’s just go a little bit further,” and they found it. 

At the time, she was like, “I’ve never really seen it there.” The doctor was like, “We don’t know if it’s mantle or not.” I just had to assume that I had something in my body that shouldn’t be there, and we were going to have to deal with it.

They did a biopsy in the right, but they had found that there was a spot on the left. Because originally I had it in my right breast, they concentrated on that. They also did a biopsy on the lymph nodes as well. It was in the lymph nodes. 

Then I had a different oncologist because it turned out my original oncologist wasn’t a specialist in mantle cell. She was a myeloma doctor, so she had referred me to a mantle cell or non-Hodgkin’s specialist.

Meeting with the oncologist

When I saw her, we luckily Zoomed, because my son, the paramedic, lives in Lancaster. His fiancée is also a nurse, and she’s actually an oncologist nurse. They were on the phone with me and the doctor. I wanted them there because I figured if there’s any questions that I might not think of, they would know. Of course, my future daughter-in-law was able to ask questions about my options, which was really good. 

What I liked is that my oncologist was very open and took the time to talk to the 3 of us and answer questions. I’m a layman. Even though I worked for City of Hope, I was a secretary. Then she wrote on a piece of paper and was able to show them because they could relate, and they knew more of the medical terms. I was just thinking chemo, and she was talking about immunotherapies and CAR T-cells and all this stuff. That’s why she gave me options.

When my oncologist was explaining, she said that there was the standard Rituxan. She said that those drugs had advanced so much since the time before. There are so many different improvements. Rituxan has improved a lot, and even the ibrutinib had improved. 

I was leery about that one because of the side effects, but she said they had worked out some of those side effects. The chemo brain was one of those that was like one in 1,000, and of course I happen to be one of those in the 1,000 that had that one. I had it really bad.

Chemo brain

Chemo brain is something for some reason some cancer patients have, and I unfortunately was one of those that had it. I’m talking to you, and then it feels like somebody just put up like a black sheet of paper in front of me, and I have no memory. 

You can say, “Cherylinn, we were talking about X, Y and Z,” and I won’t remember. I won’t remember at all, and you’ll have to just talk. Sometimes it can be really scary. Working, especially working for a chairman, that was not a function that I could do. I couldn’t be talking to a patient or somebody on the phone and then all of a sudden be clueless. That was one of my concerns now.

Clinical Trial and Stem Cell Transplant

Clinical Trial Options and Requirements

Treatment options

She mentioned the Rituxan, and then she also mentioned CAR T-cell. I knew a little bit about it. The CAR T-cell, even though it’s a really good therapy, is kind of like the one that you use as your last resort because it’s so potent. You want to really keep that until when you’ve exhausted everything else.

CAR T-cell therapy

My son or future daughter-in-law had asked, “What about the CAR T-cell?”

“That one is a good one,” she said, but she wanted to try other options first and save that one. Like I said, mantle cell is a cancer that’s going to come back. That’s reality. I’d rather keep that one in the back burner. At that point, when the Rituxan doesn’t work anymore or this doesn’t work anymore or there’s nothing out there, then we have that as an option.

»MORE: Read more patient stories and info about CAR T-cell therapy

Clinical trials

There were 2 clinical trials that she had talked about. She said there was one clinical trial where it was an immunotherapy plus a chemo drug combination. Then there was another clinical trial that was just an immunotherapy that was specifically made for mantle cell. When my son and Melissa and I were talking about it, I seemed to gear toward trying the clinical trial.

With anything, we have a chemo drug like Rituxan. It kills everything. It kills the good cells and the bad cells. I’m older, so I want to make sure that if I have good cells, I want to keep those good cells. The clinical trial was made specifically for mantle cell. For me, it seemed like a logical choice to try the clinical trial. 

With clinical trials, a lot of people think that some people get placebos and some people get the drug. No. What people have to understand with clinical trials is that everybody is going to get the drug. 

It’s just to see how well it works and how it affects people. That’s why it’s always good for people to understand that clinical trials are not where some people get placebos. Everybody gets the drug to see how it’s going to affect you.

»MORE: Read more on FDA approvals of clinical trials

Deciding on the clinical trial

She was really good at explaining the clinical trial, the one that had the drug and the chemo. If I had done the Rituxan, it was going to be the same thing. It was just a general non-Hodgkin’s chemo. It was the immunotherapy plus the chemo.

It had really good results, but then when she said they had the clinical trial that was specifically made for mantle cell, it just seemed like a no-brainer that I would want something that was specifically for MCL. I asked, “Okay, if you had to choose between the 2?”

She mentioned the one that was specifically for mantle cell. She said, “That one is more toward just for your type of cancer, but they all work. Any one that you want will work, but if you want the one that’s going to be specifically for the mantle cell, this is the clinical trial. That would be the best bet if you’re going that route.”

Requirements to get into the clinical trial

They did a barrage of tests. The EKG, the stress test, tons of blood work, tons of paperwork. Be prepared that you’re going to do a lot of paperwork. What’s good is that wherever you go, if you’re in a clinical trial, you have a clinical trial staff specifically outside of your oncologist who will walk you through it. They will literally sit there and walk you through all the paperwork. 

One of the things that they had mentioned to me when I was sitting with them was genetic testing. I thought, “Well, wait a second. At my age, what good is genetic testing going to do?” They explained to me genetic testing would help future generations, especially within my family. I have a daughter, and I have a granddaughter. Will this affect them down the road? 

With breast cancer, my sister had told me it may not affect her children — she had 2 daughters — but it might affect her grandchildren. I thought, “You know what? Yeah, maybe a genetic test, which I am going to have done, might help.” 

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

Clinical trial experience

Reactions to Treatment

Then you do the clinical trial. For that, your first round of chemo or the drug, you’re in the hospital environment. Like anything, the first time you take it, your body reacts.

That’s reality. I did have a reaction, but they were aware of it. They were able to help me. You had the typical throwing up and the fatigue. In my case, my liver enlarged, but they knew. That’s one of the reasons why you’re in the hospital. They’re aware of these, but it’s good for them in the clinical trial to note those things. The next phase they go into, they’ll know this might be something that happens. They may be aware of it all the time.

Reading through the informed consent document

They did sit with me and go through the pages, but it was like scanning. It’s like anything where you just scan it. They show you the important parts of the paperwork. I actually did sit and read, and there were a couple of places I highlighted. Luckily, I was through the portal of City of Hope. I emailed my doctor and said, “I saw this and this and this. Should I be concerned about this?” Then she responded to me with an answer that made me feel better. I thought it was good.

Financial obligations

Because it’s a clinical trial, I haven’t had any costs for myself. It might also be the type of insurance. Because of my age, I’m on Medicare. Also, because I want to continue to go to the City of Hope, I have a Blue Cross supplement. I haven’t had to pay for anything, but I think it’s part of the clinical trial that the lab work and everything is covered. 

Reporting symptoms

For any symptoms that you have, anything that is out of the norm, they ask you to call them and let them know. This way they can say, “Okay, yeah, maybe this might be related,” or “No.” 

For some reason, I had really bad headaches. I could take Tylenol, so once I took the Tylenol, the headache went away. I made sure that they knew that I was having headaches. 

For some reason, I was always hungry. I was on a weight management program. I had lost 40 pounds, and I was so excited about losing the 40 pounds. I’m on this chemo, and I’m thinking, “I’m not going to be eating.” Then all of a sudden I’m eating, and I’m hungry. I put on like 6 pounds. 

They told me to be concerned about my weight, but not to dwell on the fact that I was gaining weight with it. That was one of my side effects, so I don’t know if being hungry is a positive or a negative thing.

Reporting and treating side effects

I would journal my symptoms, and I would email my oncologist. I would say, “This is what’s going on.” I woke up one day, and I couldn’t stand on my left leg. It wasn’t related. I have neuropathy. It was one of those things where I talked to her about it, and then I talked to my pain management doctor. We were able to get me a medication that relaxed the muscle. 

I had the chills and the high fevers the day after treatment, and I ended up in the the triage and emergency.

I sat at home thinking, “Is this related to the chemo, or is this just my body?” I let them know that that was what was happening, that I was having pain in my left leg. It was resolved within a few days by just taking medication. 

That’s one of the things with the clinical trials. You have to let them know, because what if it was a symptom, and you didn’t tell them? Don’t feel like you’re bugging them. If you say, “Hey, you know what, I have tingling in my right arm,” let them know it because then they can note it.

Then they can work with you to find out what the tingling is. Is it related to your treatment, or is it just something happens to people, especially when you’re older?

Cytokine release syndrome (CRS)

I had the chills and the high fevers the day after treatment, and I ended up in the the triage and emergency. I ended up in the emergency room, but it turned out that my PICC line was infected. They had to take that out, but I think it was a combination of both.

Then again, I had the chills. I thought, “Oh, I could just deal with it at home,” but then I called. I live alone, so I had to call my son, and he lives like 10 minutes away. He took me in because I was running a fever, like 101, and I had the chills really bad. They just kept me, they hydrated me, and then I was able to go home later on that day with antibiotics.

»MORE: Read patient PICC line experiences

Looking Toward the Future

Helping future patients

That’s the whole point of a clinical trial. If I call them and I’m telling them all these different symptoms, it might help the next phase and the next group of people, and they might be able to find out what is causing the chills and what’s causing the headaches. That’s what they do. They tweak it so that they know that for the next phase. They already are aware that these people have had those symptoms. 

Usually within a day or 2, I’m back to normal. I walk my dog. I live in the mountains. I’m back to walking her again. Now I’m on the next phase, where I now get the chemo every third week. For 2 weeks, I’m pretty much back to normal, where I can exercise. I can maintain my weight program and just do the normal things that I’d normally do. Next week I’ll have my treatment. I know the reality is for a couple of days I’m going to be tired, and then I’ll be back to normal.

What guidance do you have for others about clinical trials?

Trust your group. Trust that they will keep you informed. I’m always a person that believes in gut. You’ve had those doctors that you go in, they don’t even look at you, and then they walk out, and you’re sitting there thinking, “What happened?” 

I like the clinical trial group that I’m in. She will answer my questions, and if she can’t answer it, my oncologist and her physician’s assistant always will respond to me with whatever questions or concerns that I have and let me know, “This is what we’re going to do.” 

Now I want to have a port put in my chest because I don’t have a PICC line. I said, “What are my options of having a port put in?” If you have those kind of questions, no question is a stupid question. Ask the question, and they’re going to give you an answer, one way or the other. It may not be the answer that you want, but they’ll answer. 

For instance, they said, “You can’t drink alcohol while you’re in the clinical trial.” I’m not a drinker, but it’s funny. It’s like telling a kid they can’t have a cookie. When they tell you you can’t have alcohol, all of a sudden you’re like, “Today’s really hot. I would love to have a beer.” 

You just understand that during the clinical trials there are certain things that they ask of you, and there’s a reason for it. I understand that they’re not asking you not to drink alcohol because they don’t want you to drink it. It’s because there has to be a reason. That’s why for me, it’s okay.

Going back to school and reaching goals

I was going to school, and I could have just said, “What’s the point?” I didn’t. It was a goal that I had put for myself, and I didn’t want the cancer to stop me from doing what I wanted to do. I got my bachelor’s, and then I wanted to pursue it. I wanted to get a master’s in a field that I knew at the time there would still be positions open. 

I got my master’s in HR. Because of my work with cancer patients, I thought about getting a master’s in psychology. Maybe it would give me some little bit of insight into what’s going on with people, and maybe it might help me with talking to people.

It was hard because there were times when I had to take a leave of absence from school. By then, it was online. My bachelor’s was going to a classroom, but both master’s degrees were online, so that was easier. I still had to take medical leave.

One time one of the doctors at City of Hope asked me, “What’s the point?”

I said, “I didn’t want to give up just because I had a disease.”

I wanted to prove to myself that I could do it. I can prove to somebody else that it’s not a death sentence. If you have goals in your life, keep your goals. Do them, because you feel so much better to succeed. I also wanted to show my kids that you could go to college. You could go on with your life. You don’t have to let that hold you back. That’s one of the reasons why I got my degrees. 

Stem Cell Transplant

Autologous stem cell transplant

I got a stem cell transplant back in 2007. Ironically, I got that through UCLA. I used my own cells, so that’s autologous.

The doctor that I was working for at City of Hope, Dr. John Zaia, is a virologist. One day we just sat and talked about my disease. He’s the one who told me, “Your cancer is really aggressive. Why don’t you get a stem cell transplant?” I didn’t even know it was. 

I called up my oncologist, and I said, “I have a bone to pick with you. Why didn’t you do this?” He said I did so well he didn’t think about it. Then he thought maybe this should be an option. Because of my insurance, he sent me to UCLA, and they did the test. 

It was already 6 months after I had finished R-CHOP, and they were like, “Well, maybe we shouldn’t do this.” Dr. Pinter-Brown is just awesome. She said, “Let’s just do the test and see if you’re a good candidate.” It turned out I was, and that’s when they decided to go ahead and do the stem cell transplant.

»MORE: Read patient experiences of stem cell transplants

Testing for candidacy

[Testing] was blood work and an MRI to show that the cancer wasn’t back. They wanted to make sure that I was still in remission to do it, because normally a stem cell transplant is done within a month of when you finish chemo. This was like 6 months later, so that’s why it was like, “Let’s see if you’re still a good candidate.”

Stem cell transplant experience

It’s changed so much since 2007. In 2007, I was in the hospital in isolation for like 6 weeks. It was horrendous, because you get like 3 or 4 times the dose of chemo, so you have no immune system. I had told nobody to visit me because I didn’t want to take a chance. They said even if somebody sneezed and I was to get an infection, it’s life and death.

For me, it was really hard because I did have a lot of the symptoms. I had the cold sores in my mouth and a rash. At one point, it was so bad that I actually was put into a coma because the pain was just too bad.

It’s changed now because now people are doing outpatient. It’s changed so much since when I was in, because you had to be in isolation for like 6 weeks.

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

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More Mantle Cell Lymphoma (MCL) 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’s Stage 4 MCL Non-Hodgkin’s Lymphoma Story

Stephanie was surprised when abnormal blood tests led to a diagnosis of stage 4 mantle cell lymphoma (MCL).

Stephanie’s journey includes a year and a half of watch and wait, a clinical trial and hyper-CVAD chemotherapy.

Through all this, she learned the importance of asking questions and celebrating the little things.

Thank you for sharing your story with us, Stephanie!

• Name: Stephanie R.
• 1st Symptoms:
  • Elevated white blood cell count
• Diagnosis
  • Non-Hodgkin’s lymphoma
  • Subtype: Mantle cell lymphoma
• Stage: 4
• Treatment
  • Watch and wait (1.5 years)
  • Clinical trial
    • Rituxan (rituximab)
    • Ibrutinib
    • Hyper-CVAD chemotherapy

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

MCL Diagnosis and Watch & Wait

Introduction

Tell us about yourself

I’m a scientist by training. I’m a molecular biologist. I work in the biotechnology industry, in the patient advocacy space at the moment. I’ve done research for a number of years, and then I worked for a patient advocacy organization for about 10 years before joining the company I’m at right now. I’m married. I have a fur baby — no children, but a cat I love dearly. I live in Texas.

How did you discover you had cancer?

I have a metabolic issue that requires that I get blood work done periodically. At this point, it’s about twice a year. I was going in for a regular checkup, and they took blood. It came back with a high white blood count, which isn’t necessarily anything to worry about, but it was unusual.

They recommended I get it checked in a couple of weeks, so I did. It could have been an infection or something. I went back in a couple of weeks, and it was up a little higher still. Then they recommended that I get it tested again, and it was a little higher still. 

By that point, I had followed up with my primary care physician, who let me know he was concerned about that and recommended that I see a specialist.

I was a little concerned because I had seen the white blood count go up, and the first one was a little bit high. The next one was just a little bit higher still. That third one was definitely high, and it was still going up, not coming back down. 

He said, “This doesn’t look like a normal infection. You might have some sort of viral infection that you’re just taking a long time to get rid of, or there’s a number of other things it could be. I just would feel better if you would see a specialist.” 

He did not at any point say, “Cancer.” It wasn’t in my head that he was thinking cancer, but I was a little concerned. I thought something was going on.

Realizing it might be cancer

He said, “This is the office I’m going to refer you to. They’ll set you up with an appointment, and you’ll go in.” I looked, and it occurred to me that it was an oncology office, but it didn’t really sink in that it was an oncology office until I was walking into the oncology office.

I think my background got me because I’ve been in cancer research, so I’ve been in hospitals, I’ve been in cancer wards, and I’ve walked with cancer patients through their journey. But I was going in for me, and as I walked in and it was for me, it hit me in the face that they think I have cancer.

I was a little surprised that it hadn’t occurred to me until that moment that this is what was happening. I was thinking it was some sort of an infection. It’s a high white blood count. It’s really not that big of a deal. 

I didn’t really know much about blood cancers, but I knew a little bit about CML and some of the more common ones, so I was starting to think maybe it was something like that. 

I knew I was doing what I needed to do, so I just moved forward even though I was quite nervous that day. At the point that it hit me, it really kind of threw me off my game. I was not going in in a good headspace.

Waiting for an appointment

All this happened toward the end of 2014. The holidays got in the way. By the time they made the referral, we had to get through the holidays and the new year and get in. It was a good about 6 weeks between when he said, “You need to see a specialist,” and when I actually got in to see the specialist, which is probably why I was not all that worried about it.

They didn’t seem all that worried about needing to see me very quickly. Once I saw him for the initial consultation, there were follow-up appointments, and those took a while for the same reason. It began to wear on me, I would say. 

Once it occurred to me that they thought I had cancer, I was in a hurry for them to figure out what it was, and they weren’t in such a hurry. We need to figure this out because I need to do something. Why are you not in more of a hurry?

Undergoing scans and tests

Up until the point I saw the specialist, it had just been blood tests. They were looking at my white blood count. He did more blood tests, but he did significantly more blood tests. I felt like perhaps they were draining me of all my blood. 

But he also ordered a bone marrow biopsy and a CT scan, just to see what was going on. He didn’t order the CT scan on that first visit. That was a follow-up visit. There were quite a few tests.

Then it turns out they were drawing all the blood because not only were they doing blood tests, but they were doing what’s called the karyotype to look at my genetic markers, because that’s eventually how I was diagnosed. I had a translocation. Two of my chromosomes had flipped, and that’s how they determined I had MCL. 

CT Scans

The CT scan is just a long day. I don’t find it particularly difficult, and every one I’ve ever had has been in sort of an open unit. You do have to be alone in a room. They give you either something to drink or sometimes an IV infusion or sometimes both, depending on what they’re using as markers. It’s a radioactive marker. 

You’re alone in a room because you’re suddenly radioactive, and they give you some guidance about when you go home. It sheds pretty quickly, but you have to be careful for a little while around your family. 

Then you have to wait for like an hour while it works its way through your body, and then they take you in for the scan. The scan itself takes like 20 minutes. Usually you lay on a bed. They move you through and sort of coach you through the whole thing. 

I don’t find that part particularly difficult, but some people don’t love being in the machine. I don’t like the waiting part. That’s the part that gets me. The first one was a CT scan. I’ve had several PET scans since then.

Bone marrow biopsy

The bone marrow biopsy is not fun. Basically they are taking a giant needle and putting it into the middle of your hip bone to take some of the marrow out. The marrow is what’s in the middle part of your bone. 

It’s painful. I’m not going to lie. They will give you things to help you through it. Keep moving afterwards, because if you get still, you get really stiff and sore. I learned that the hard way. 

They will often tell you things like Claritin or an antihistamine will help with the pain. I’ve heard people say that it did. It didn’t for me, so just know that. Not everybody reacts the same. I found Tylenol or Advil to be sufficient, but talk to them about that because it can affect other things that you might be on.

The Diagnosis

How did they use the tests to figure out you had cancer?

The tracer that you drink for your CT scan, certain cells in your body will absorb it faster than other cells. Those are rapidly growing cells. If you have a cancer, it will absorb it, and it will show up on the scan more than your typical organs. 

There are a few other things that can show up, but they know what those are. They can look at them as background noise. That will tell them if you have, in my case, cancer in any of your lymph nodes or maybe in your spleen or wherever it might show up. 

I didn’t on that first scan. Nothing showed up on the CT scan. But it’s one of the things they did to try to identify exactly what was going on and how much it had spread or how much it was through my body. 

The bone marrow biopsy was the same thing. They were looking at my bone marrow to see if it was infected with any sort of cancer cells. My bone marrow was showing some lymphoma cells in it.

That’s how I was originally staged with stage 4 non-Hodgkin’s mantle cell lymphoma. At first they thought it could be CML, which is chronic myelogenous leukemia, or a couple of other more common things just because of the way it presented with me. 

Translocation

In the blood test that they ran, they did a karyotype, and they looked at my chromosomes. Everybody has 23 pairs of chromosomes. You probably know X and Y. That determines your sex. You have 22 other pairs as well. 

With mantle cell lymphoma, 2 of them trade places, and it’s a specific 2. They were looking at that, and with chronic myelogenous leukemia, a different 2 trade places. I ended up being diagnosed with mantle cell lymphoma. 

That’s called a translocation when they move, and I had the one that’s typical for mantle cell lymphoma. Other than that, all I had was the high white blood count, and then it did show up in my bone marrow.

»MORE: Genetic Testing for Cancer

Receiving the diagnosis

It was the first time when I went back for the results from all these tests. I was still in denial. Maybe I was still thinking, “There’s probably nothing there. They’re just being careful.” Then when he sat me down, he showed me. I ask a lot of questions, so he showed me all the results and explained everything to me really well. 

All I could think about is, ‘I am not telling my mom on her birthday, and I can’t do this at the baby shower. So I guess I have to tell them on Wednesday.’

I would advise you to take somebody with you to any of these appointments, and I’ll get to that in a minute. Your brain will stop working, and you need somebody there that can ask questions. When he was like, “These results tell me that you have mantle cell lymphoma,” my brain clicked off.  

The only other thing I could tell you that he told me was, “Do not go online and look this up.” So of course, what’s the first thing I did? It was to go online and look it up. He told me I had mantle cell lymphoma. My brain clicked off. I remember thinking, “I don’t want to die.” 

He explained to me what some treatment options and things were. I couldn’t tell you what he said. I had to go back for a follow-up to sort of decide what course we were going to take. That’s the point at which I started paying attention to what the options were.

»MORE: Reacting to a Cancer Diagnosis

How did you break the news to your loved ones?

I’m married. The first thing I thought is, “Oh, dear God, I have to tell my husband.” Then the next part of that was, “And I’m going to have to explain it to him, because he doesn’t know cancer like I know cancer.” We have a very healthy, good relationship, and he’s very strong and supportive.

It took me a minute to be like, “Oh, I have to say this out loud, and I have to tell him.” When he got home from work that night, he knew I had a doctor’s appointment. He asked how it went, and I told him. He just sort of listened to me download how I was feeling about all of it. 

Then he was like, “When are you going to tell your family?” Meaning my mom and my brothers and my sisters-in-law. This was in February, and it was the week of my mom’s birthday and the baby shower we were having for my sister. All I could think about is, “I am not telling my mom on her birthday, and I can’t do this at the baby shower. So I guess I have to tell them on Wednesday.”

»MORE: How To Tell Your Family and Friends

 

Watch and Wait

Being on watch and wait instead of treatment

He did recommend watch and wait. We talked about it more at that second appointment, when I actually could hear what he was telling me. I honestly hadn’t ever paid attention to watch and wait. It was something that was recommended for certain cancers, but in the world I worked in, it wasn’t really an option. 

I asked a lot of questions. I was like, “What? Why are we not going to do something? You just told me I have stage 4 lymphoma. I feel like we should do something.” He did a great job of explaining to me that, yes, it was stage 4. I worked in breast cancer at the time. 

He literally sat down and looked me in the face and was like, “This is not breast cancer. You have to trust me. Ask your questions. This isn’t the same thing. Just because you have stage 4 doesn’t mean you’re actively dying in the next short period of time. At the moment, it looks like you have a not-aggressive form that’s not spreading very rapidly. It will be better if we can watch and wait for a while, because once we start treatment, we’re down a path that we have to continue until you go to remission. We can’t just keep switching treatments forever.” 

Processing not being in treatment

I understood that, but I didn’t like it all that much. We know that there’s something big wrong with me, and we’re not doing anything about it. I have to figure out how to just walk around knowing that I have cancer growing inside of me. But I understood why he made the recommendation. 

I asked enough questions to get comfortable with that. He was saying the first choice would probably be chemotherapy. I was like, “I don’t really want to go through chemotherapy if I don’t need to go through chemotherapy. You can tolerate this.” 

He was also really good and would check in with me and be like, “Some people just can’t cope with this, so if you really can’t cope with this, let me know and we’ll figure out a different path.” Just the fact that he would check on me and ask made me able to do it a little bit longer.

What questions do you recommend asking your doctor?

I think people worry about different things. I wanted to know what were the other choices? What does treatment look like? How long are people on watch and wait? How will we know if it’s progressing? I needed to do something. Those were the things that were bothering me, and so that’s what I asked about. 

I did get a second opinion just to make sure that was the right approach, but they did also recommend watching and waiting between the 2 oncologists. They both had patients that were on watch and wait for significant amounts of time. I asked about that.

That also really helped me because I realized I didn’t know how long I would be on watch and wait, but it could be like 5 or 10 years. That was significant because, again, the other choice at the time was chemotherapy. If I could postpone that for 5 or 10 years, why wouldn’t I?

Finding an MCL specialist

He was local to me and at a good cancer clinic. It was certainly in a community setting, not an academic research institution. I live not close, but a reasonable distance from an excellent academic medical center, MD Anderson. 

It’s super important for you to advocate for yourself. You know yourself.

I drove down to MD Anderson and got a second opinion there, and I picked MD Anderson because they have a lymphoma clinic. They have a couple of specialists there that literally focus on lymphoma.

The importance of advocating for yourself

It’s super important for you to advocate for yourself. You know yourself. You know if you feel comfortable with the decision or if you have any questions that are sort of lingering with you. 

I would say you should always get a second opinion. Some doctors may give you a vibe, or you may feel like you’re getting a vibe that they don’t want you to. But by and large, they appreciate your involvement and your engagement. 

Most oncologists at least will welcome a second opinion because they know that your life is in their hands, too. If somebody else sees something different, then they can collaborate and figure out what’s the best approach. If it’s the same recommendation, then that’s confirmation. 

I’ve heard a few stories of patients that felt uncomfortable about getting a second opinion. I’ve never known a doctor to be like, “I hate it when a patient gets a second opinion.”

You’re making big decisions. I worked in the field, but this was not my area of expertise, and I was making decisions I didn’t have a lot of information about. More information is better, and if you can get a little bit more information, it just gives you a little bit more confidence about what decisions you’re making.

»MORE: Cancer Patient Advocate

Choosing to stay with MD Anderson

I did end up being treated at MD Anderson when I was eventually treated. I was very open with my local oncologist about it, and MD Anderson was very good at working with him. It’s not like I live in Houston. It’s a few hours away. They worked together. When I would get tests done at one place, they would send them to the other. I don’t know that it would always work like that. 

In general, most academic medical centers (if you’re traveling to get there) are very willing to work with you locally and make it easier on you because the travel is not easy. I just felt more comfortable being treated at an institution that saw a good number of patients with what I had and had some experience.

It was blood tests every 3 months and CT scans every 6. I did both at my local center, and then MD Anderson recommended that I come back in a year just to get checked there again. I did a year of follow-up with my local oncologist, and then I went back to Houston and got that second CT scan done there.

Being on watch and wait for 1.5 years

When we talked about it originally, I asked a lot of questions and got comfortable with the decision, because I understood that we were trying to delay chemotherapy, but it was a hard year and a half. 

This is not actually a normal symptom of MCL. I just happened to have this symptom: my white blood count continued to go up every single time. It went up a little bit sometimes, and it went up a lot sometimes. 

Every time I was like, “Is this the day that they’re going to tell me I need treatment? Is this the day that they’re going to tell me?” I would wake up, and if I had a sore throat or I felt like maybe something was kind of swollen, I would be very worried. I would call and ask if we needed to have that checked out. 

While I was comfortable with the decision, it was not a peaceful time at all. I was maybe a little hypervigilant compared to most, because I literally was worried about everything. They probably got tired of me calling and asking them if they need to check this out or what was going on.

Helpful tips for dealing with the wait

I would fall back on, “I’ve gotten the opinion of 2 doctors. They have experience with this. Other people have gone through this.” 

I wasn’t really part of a support group or anything at the time. In hindsight, I probably maybe should have found a group to talk to, but I didn’t have one. 

I would just sort of rely on all those reasons I had made that decision: that they were monitoring me, that they were seeing the same things I was seeing, and they still thought it was okay. I would talk myself down basically.

Healthy distractions

I did pick up my exercise routine a little bit, and I changed up my diet. “I’m going to give myself the best chance I can to prolong this as long as I can,” I thought. I went on an anti-inflammatory diet and was actually in pretty good shape. I have no idea if it did anything for the MCL or not, but it was good for me. It made me feel like I was doing what I could.

»MORE: Eating Healthy During Cancer Treatment

MCL Treatment and Clinical Trial

Treatment Options

How did you know it was time to start treatment?

While I was on watch and wait, I was being seen by my local oncologist, and they were doing regular blood tests and then periodic CT scans. I had had the 2 CT scans locally and then realized it was time that I needed to go back to MD Anderson to check in with them. 

I made an appointment with them, and my most recent blood test from my local oncologist was quite high. My white blood count was 125. I was a little worried about that. I really felt like even though it absolutely was time for me to go back to MD Anderson, I was sort of prompted to go because I wanted to just get the second opinion again. 

This time they did the same workup. They drew the blood again. They did another CT scan, and they did another bone marrow biopsy. Not only was my white blood count quite high, but my spleen was significantly enlarged and showed up on the CT scan, which hadn’t showed up locally. My bone marrow was significantly more affected. 

We had the conversation about treatment because they were most worried about my spleen. I’ll admit it. Having now seen the picture, it was quite enlarged. I didn’t really notice anything. I just felt a little full when I would eat, unusually full. That’s because it slowly got larger, and I didn’t really notice until they saw it on the scan.

How did you react to the idea of starting treatment?

As I had mentioned previously, every time I sneezed, I basically was like, “Is this it? Is this when I need to go for treatment?” My first reaction was, “This is what it’s like. Now it’s time. We’re here.” I had also told you that when I was first diagnosed, the option had been watch and wait or chemo. 

My immediate thought was, “Now it’s time. Oh, crap. I need chemo.” I was quite scared about that. I knew we needed to treat the cancer, but I also know what chemo can do to you. I was not very happy about it. Plus, then what about my job and all this other stuff I have to do?

Exploring a clinical trial as a treatment option

This was at MD Anderson with my oncologist there. He’s a research specialist, and he explained what the treatment choices were. He also explained that there was a clinical trial. He had started it as a smaller trial, and he had just gotten approval to expand it to double the number of patients. It was originally 50 patients, and he got approval to double it to 100.

Of course, I was interested because I have a research background, and that’s what I do. The beauty of this clinical trial was testing a combination of 2 targeted therapies, or drugs that we call biologic drugs. 

It’s not chemotherapy or chemicals that kill basically anything that’s growing. It’s kind of like carpet bombing your body, but it kills the cancer. Biologics are more targeted. They find something specific about the cancer cell and attack that. They can occasionally have some side effects, but it’s not the mass toxicity that you get from chemotherapy.

This was a combination of 2 of them that I asked a million questions about. The data looked like it was a good combination that would be effective. After you responded to those drugs — assuming you responded to those drugs — then they would follow with just a couple rounds of chemotherapy, because they have to offer you the standard of treatment. 

Something that a lot of people don’t necessarily understand about cancer clinical trials is that you have to get at least whatever the standard of treatment is, and you usually get more. It’s more screening, it’s more follow-up, and it’s an additional drug. There’s no placebo.

»MORE: Clinical Trials in Cancer

Hyper-CVAD chemotherapy

There are 8 drugs in the chemotherapy, yet it’s an A/B cycle. Cycle 1, you get the A drugs, which there’s 4 of. Then cycle B, you get the other 4 drugs. Then you go back to A, and then you go back to B. 

Hyper-CVAD will take the disease down, but it won’t knock it out. It was unheard of to get to full remission with hyper-CVAD.

It’s an infusion. It’s a 4- to 6-day infusion, depending on which cycle it is. Then you have 3 weeks off, and then you go back for the next cycle. It’s the more aggressive of the chemotherapy treatments for MCL, but because I was younger and pretty healthy otherwise, that was what they were recommending for me. 

If I had been an older patient, they probably would have picked a different regimen because hyper-CVAD’s tough. It’s the same regimen they give you if they’re doing a bone marrow transplant.

»MORE: Chemotherapy

Factors to consider and questions to ask

First of all, when you’re considering a clinical trial, keep in mind that yes, it is experimental, but in the cancer world, they believe it’s better than the current standard of treatment. 

I would ask why they think that? What are the data? You may not care about that. I did, so I asked a lot of questions about, “How’d they come up with this combination, and why do they think this is better, and what are the outcomes with just the hyper-CVAD?” 

For a lot of other people, they just want to know why they’re recommending this clinical trial. “How many other people are in the clinical trial? Are there people like me in the clinical trial?”

I was a young woman with what is most commonly an old man disease. He was quite excited to possibly have a woman in the trial, and then he asked me to help recruit other women into the trial after I had joined. 

I really wanted to know why they thought this would be better than what the current treatment was. What he told me at the time was hyper-CVAD will take the disease down, but it won’t knock it out. It was unheard of to get to full remission with hyper-CVAD. 

Enough people in that first 50 reached complete remission. They really thought that they could at least get you to complete remission. They didn’t know how sustainable it would be, and he was very honest with me about that. 

For me, that was it. If you can’t get me there with this, but you might be able to get me there with that, I’m going to try it because that’s better. You also need to be comfortable with the fact that it’s research. 

Resources

The Leukemia & Lymphoma Society has a great resource for learning about clinical trials and even has prepackaged questions you can print off and ask your doctor. The Lymphoma Research Foundation also does. Theirs is a little more specific for lymphoma because that’s what they focus on. These are great resources. 

Don’t hesitate to ask questions. Everybody has questions about clinical trials. I asked so many questions that he actually took me into his office and pulled up a presentation he had just done at a scientific meeting and basically gave it to me to answer my question.

Treatment options after hyper-CVAD

He did explain that he would start with the hyper-CVAD chemotherapy. It would knock it down. We would go back to the watch and wait pattern. He was like, “I don’t know. It could come back quickly. It could come back slowly like it did before. You can have another 2 or 3 years between now and needing your next round of treatment.”

He’s like, “We could try hyper-CVAD the next time, but odds are if it grew back after we gave that to you the first time, it’s not going to work so well. We usually go to a second kind of chemotherapy the second time, and then that knocks it down. Then you go back to watching and waiting.”

At that point, it’s a game of, “Can the chemotherapy regimens keep you going long enough to have a full life?” But you’re also building up all the different treatments and toxicities, so that’s not pleasant. 

Stem cell transplant was an option. He was like, “At some point after the chemotherapy, we’ll talk about the stem cell transplant.” They could harvest my own stem cells and put them back in, or it could be from somebody else. We would talk about that then. 

Really, those were the choices. It was sort of this life of going through chemo, watching and waiting, going through the next treatment, watching and waiting, hoping something was sustainable or at least sustainable enough that I could make it to my 80s.

Clinical Trial

Choosing the clinical trial

Realizing it was experimental, you could not say for sure what was going to happen in my case, but there was enough data from these previous people who had participated in a trial to suggest that they could at least get me to complete remission. 

We wouldn’t know how long that would last, so it might end up being a very similar cycle. When you’re starting from nothing, it feels at least like you have further to go until that next treatment than if you’re starting halfway there, for lack of better terminology.

Rituximab and ibrutinib process and side effects

The rituximab is an infusion, so I had to go in. They have to ramp you up to it. They checked me into the hospital. They started me on basically an IV slow drip of Rituxan. I had a pretty classic but pretty aggressive reaction to it at first. 

It can trigger something called the rigors in you, which affects basically your whole body. It’s like you have a really bad fever and the chills that you get with a really bad fever. You’re just balled up and shaking. They clocked that right away, buried me in warm blankets and gave me something to counteract that. My husband tells me it was only like a minute or so that I was going through the rigors. It felt like half an hour to me.

Then they slowed the drip down. That first one, to get the whole dose in, took actually 2 days for me. That’s pretty unusual. They had to slow it down quite a bit. Beyond that, they then would speed it up. Eventually, it got to the point where the infusion would be like 4 hours. 

I would just go in at first every 2 weeks, and then it was once a month for the Rituxan infusion. For that first month, I was only on the Rituxan. Then they added the ibrutinib. The ibrutinib was a pill, and it was just a pill that I took every day. One pill once a day. 

»MORE: Targeted Therapy

Working during treatment

I could go about my life other than having to go for this infusion once a month that, like I said, did only take 4 hours most of the time. I was able to work through the whole thing. I had enough leave time that I could take days off to go get the infusion, and my company was really good about it. I would hope they would be; they’re a cancer organization.

I sort of proactively talked to HR about what it would look like if I needed to take leave, because I didn’t know how I was going to feel at all or how much I was going to need to be in and out of the hospital with this treatment. Early on, we walked through what work would look like. 

I just declared this day the celebration day, and then the next day I worried about chemotherapy.

She gave me the paperwork and told me at whatever point I wanted to go that route, just to fill the paperwork out and give her a call, and she’d help me get it filed and stuff. Super supportive there. I’m probably jumping ahead, but I ended up doing intermittent family leave for the chemo portion of my treatment because I was in the hospital for a week at a time.

»MORE: Working During Cancer Treatment

Remission

Every month when I would go for my infusion, they would do blood work. At first they just did the blood work to see how I was responding. They would look at my white blood count. They would look at a few other things to see how I was responding to the test.

Then 3 months in, they did another bone marrow biopsy to check if my bone marrow was responding to these biologic drugs. My white blood count was significantly down and my spleen was down back to normal size, but my bone marrow was still showing some mantle cell lymphoma. I kept going on the biologic. 

Then at 6 months, they tested again, and I had had a complete response. My white blood count was below normal now, and my bone marrow was completely clean. Nothing showed up on the scan — my spleen, no lymph nodes, no anything. I had had a complete response. They declared me in remission. 

Now it was time for phase 2 of the trial, which was the chemotherapy. Because I had reached complete remission, I only needed 4 months or 2 full rounds of the chemotherapy. It could have been that or 8 or 16, depending on what your response had been to the first part. I got lucky. I only needed the short version.

I was ecstatic. I had a party when they declared me in remission, literally. I just declared this day the celebration day, and then the next day I worried about chemotherapy.

Chemotherapy

Undergoing hyper-CVAD

I knew what I was doing when I signed up for the trial, but I had maybe underestimated the significance of knowing that I didn’t have cancer in my body but still going to go through chemotherapy.

I am glad I only had 4 rounds. It was tough. It got progressively worse. The first month with the A cycle, I handled it pretty well. I had sort of my contingency plan in place, because I wasn’t sure when I got out of the hospital if I was going to feel like going to work or if I was not. I was able to work. I went back to work the very next day and mostly was fine. 

The B round, I suffered more in general. It left me feeling pretty sick. Most people, it’s the other way around, but I got nailed with the B round. I still worked the whole time unless I was in the hospital. Frankly, I could have worked when I was in the hospital getting an infusion. My company didn’t want me to, so I took that time off.

For A round, I would go in 5 days pretty steadily. It’s 5 days. They sequence the drugs. They start you on 1, and then they add in the next. You’re hooked to an IV the whole 5 days.

Taking walks

You can move around. I knew the guards at the hospital, and I’d go down to the coffee shop to get a coffee and see what was going on. I could walk. My husband made me walk. He was like, “You’re not going to lie in this bed and just waste away. You’re going to get up and walk.” We mapped out a route with the crosswalks and things that was 2 miles. I walked at least 2 miles every day with my pole, who I named Fred. He was my dance partner. I was okay. 

The B round, like I said, I got sicker with that one. That’s when I learned about anti-nausea drugs and all the things that they’ll give you to help with side effects. I weathered through that pretty well, too. I kind of felt like I had the flu with the B round, but I still would get up and walk and do everything I could. 

»MORE: Managing Chemo Nausea

Clearing the drug from your kidneys

Then the second A round was a little bit worse. The B round was a little less predictable. It was actually 4 days of an infusion, but you had to clear 1 of the drugs out of your kidneys before they would let you go home, because it could damage your kidneys. That can take anywhere from 24 to 72 hours. It could be 5 days. It could be 6 days. It could be 7 days. 

I was pretty lucky. It cleared out of my system pretty well. The first time I was in, it was 5 days, and they let me go home. I had trouble clearing it the second time, so I think it was 7 days before I could go home the second time.

Treating side effects

Zofran was my best friend. I discovered coconut oil for mouth sores. They’ll tell you baking soda, which kind of works. But if you swish coconut oil around your mouth, it takes them right away. It’s amazing.

At that point, they give you drugs. They give you the drugs, and then they give you the drugs to counter the side effects of the drugs, and then they give you the drugs to help you sleep. Just embrace it, because you need to manage what’s going on in your body, for sure.

»MORE: Cancer Treatment Side Effects

Hair loss

The hair loss was a side effect of 2 of the drugs in the A regimen. I got through my first A regimen, and then 10 days after I went home, my hair started falling out. What they didn’t tell me was it would hurt. The hair pulling on my follicles, I guess. It hurt. I actually wanted it to go away because it was not a comfortable thing. 

When you’re going through this journey, you have to celebrate even some small things. You just still need to find that joy and some way to bring it out.

My husband actually shaved my head for me. I didn’t go to a hairdresser. I just had my husband shave my head. He couldn’t do it the first time. We had to try again the second night. I wasn’t bothered at all. It bothered him a lot. But we got through it. He did a great job. 

Turns out I have a really good head. I did not opt for a wig. I was bald or used head wraps the whole time. 

»MORE: Hair Loss and Regrowth

Henna crown

Then my “you got through chemotherapy” gift to myself was that I got a henna crown after my last round. It was something I wanted to do. I had seen them. I thought they were beautiful, and it was a celebration for me. I happened to finish chemo at the end of October, and my birthday’s in early November, so that was my celebratory gift to myself. 

I have a couple of friends who did henna pretty regularly. They’re of Middle Eastern descent. I called to see if they knew anybody that would do a crown for me. They knew somebody that would do the crown for me, and they came with me. We just had this very special, meaningful night. 

It took about an hour for the woman to do my head. I didn’t really have any specific guidance for her. I just wanted something beautiful. I showed her a couple of pictures of things I liked, and she free-handed the whole thing. Then my friends got their hands done, and we have a couple of pictures of us together afterwards. 

Then my husband picked all of us up, and we got some food at a local Middle Eastern place. I walked in, and immediately they knew. They just were like, “What a beautiful crown.” I just started crying because they were celebrating with me.

Celebrating the small things

For me, it was bringing some beauty out of some tragedy. You don’t have a completely bald head all that often in life, so I might as well make the best of it. That’s my favorite thing. It really was very healing for me to do that.

People think it’s odd, but it’s one of my favorite pictures of me. There’s one I’m kind of looking down, and you can just see the head. There’s a big flower right on the crown of my head. That’s sort of the crown part of the crown, if that makes sense. For me, it just is really a sign of life. Life came out of everything I had just gone through.

I believe in celebrating things. I told you I had a party after I finished round 1, and I believe in celebrating things. When you’re going through this journey, you have to celebrate even some small things. You just still need to find that joy and some way to bring it out.

Follow-Up and Lessons Learned

Follow-up after treatment and chemotherapy

Once I completed the chemotherapy, I had to go back a month later. I went back in November just so they could check how I was recovering from the chemotherapy and how everything was going. They did another set of blood tests to make sure I was still in remission and it wasn’t boomeranging — or whatever it’s called when you stop treatment, and then it comes back. I wasn’t. 

Then after that, every 3 months I would go back for blood tests and a PET-CT scan. I haven’t had to do another bone marrow biopsy since the one was clear, and I’m very grateful for that. Then I did every 3 months for a couple of years, and then they pushed it to every 6 months. 

This fall I will be 5 years out, so I haven’t been since last August. I’ll go back this August, and then I will officially have completed the trial. I will still go back for tests to follow-up for another 5 years, but the trial itself will be completed, and my data will count.

What does it feel like looking back?

That was a hard year. I don’t want to in any way say that wasn’t a hard year, but I learned so much about myself. I’m very grateful for that year. It sounds a little weird to say that, but I learned about myself. 

This is your life. You know what you want to do. You know what you need to do.

I learned about other people. People came and showed up in ways I never would have expected — to help and support and help me get through that, to help my husband help me get through that.

I am very grateful to be on this side of it. I’m 5 years out, and I haven’t had any signs of any kind of recurrence. I feel like I made a really good decision about joining that trial.

Dealing with scanxiety

Scanxiety is very real. I think knowing that it’s real and acknowledging that helps, but it’s still real. I’m cranky for a couple of days before a scan. I don’t necessarily always recognize it, but I’m just definitely on edge, because I’ve already gotten that bad news once. In the back of your head is, “What if it happens again?” 

The way I cope with that is just, “You made it through once. If you have to do it again, you will get through it again. You can do this. It’s okay.” It doesn’t make it less hard to cope with. The days after counterbalance it because you know you’re clean. You know there’s no more sign of cancer in you. You can relax as much as you were anxious for the days before. It all balances out.

»MORE: Coping With Scanxiety

Advocacy

I hope what you heard me say is just don’t be afraid to ask questions. Don’t be afraid to advocate for yourself. This is your life. You know what you want to do. You know what you need to do. You know how you make decisions. You make sure you get what you need to do that. That’s what I believe.

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