Lynn’s Small Lymphocytic Lymphoma (SLL) Story

When Lynn received his small lymphocytic lymphoma (SLL) diagnosis in 2013, he felt like he had lost his future.

Lynn saw a specialist at MD Anderson for treatment options. He is a strong proponent of seeing a specialist, especially after being a caregiver for his son when he was diagnosed with cancer in 1977.

A decade after diagnosis, Lynn reflects on his first symptoms, treatment and side effects and living life with a glass half-full mindset.

• Name: Lynn B.
• 1st Symptoms:
  • Prolonged fever
  • Night sweats
• Diagnosis:
  • Small lymphocytic lymphoma (SLL)
  • Non-Hodgkin’s lymphoma
• Tests for Diagnosis:
  • X-ray
  • Chest CT scan
  • Bone marrow biopsy
• Treatment:
  • Rituxan (rituximab) and Revlimid (lenalidomide) combination for 3 months
  • Rituxan (rituximab) and Imbruvica (ibrutinib) combination – ongoing

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

SLL 1st Symptoms and Diagnosis

Introduction

Tell me about yourself

I’ve been married to my wife since 1970, so that makes 52 years. She’s a long-suffering lady, and we alternate being caregivers. I couldn’t have done it without her. We had five children and when you have children, you’re a hostage for the rest of your life. Every day she’s got to check on them! 

I worked for an electric utility for 40 years. My training was in electrical engineering at a school in South Texas, and that was growth out of my hobby, which was ham radio. This has been an interest of mine for all these years. 

In some senses, I was bi-vocational because when I went to work for the electric company, I also was a youth minister, served in several churches, and then later on was a volunteer music minister directing choirs and leading music in a church. 

Music is one of my real loves, having grown up singing in choirs, playing a trombone in the band, and picking up the guitar. It should be no surprise that my wife, I love to hear her sing, and her voice has lasted much longer than mine has.

It all started with sitting by her as she waited to be picked up at high school. Of course, I had been trailing her for months, getting up the nerve. I was about to graduate, so I had to make my move. She left her [sheet] music there as we were sitting and visiting. When her dad drove up, she left the music, so I didn’t say a word. Of course, I knew where she lived. After her dad took her home, I followed about 20 minutes behind and handed her the music.

Ham radio

[One] morning I had insomnia about 2:00 a.m. I knew some guys were talking, and I went out into my ham shack and talked to them. First time I’d actually talked to them, but I told them I had been listening to them for 10 years. 

I said, “When I was diagnosed with blood cancer, it meant a lot to me to be able to get some normalcy by listening to you guys in the middle of the night when I was lying awake worrying about my disease.” 

That meant a lot to me to bring some normalcy into my life. You just longed for that. Your life has changed for forever when you’re diagnosed with cancer. That was my chance to say thank you to those guys that morning.

They said, “Hey, everybody out there, this is Lynn’s first time. Say hi to him.” I was hearing voices and people giving their call signs from different locations. I certainly did feel welcome. I had witnessed their companionship, the type of camaraderie. Anyway, the friendship that they have, their camaraderie. 

My wife has put up with it, like they do with hobbies, whether your hobby is radio or fishing or whatever. She’s put up with it. I appreciate that. It’s not all time consuming, but it varies.

Cancer’s impact on who you are

When you’re diagnosed with cancer or you go through a hard time in your life, it can put you in a very dark place. My normal personality is a very optimistic-type person, but I got into a real dark place. It was hard to come out of. 

I’ve shared with you that in ’74, our son was diagnosed with cancer, and I lost 20 pounds just within just a short time. People react differently to depression, but I did the same thing when I was diagnosed with cancer. 

One of the side effects of this cancer is weight loss, but I think it was as much for me as having that diagnosis hanging over me and not knowing what it meant. That it might mean I have 2 to 3 months left to live or maybe a year or 2 or 3, hoping to be a granddaddy, things like that. It’s a tough time to deal with.

Symptoms and Tests

What were your 1st symptoms in 2013?

I began to run a fever with no known cause, which was not a new thing, but it prolonged. It lasted day after day after day. It went on for a week, and so I said, “Okay, I don’t know what it is, but I want to go see my primary care physician.” 

I was having some night sweats along with that, too. I was meticulously keeping the record of the daily temperature. I actually saw the nurse practitioner, but he had a lot of experience and he said, “Let’s just get a chest X-ray and see where we go from there.” 

Then the call came from the doctor’s office after they got the chest X-ray. They said, “He also now wants you to go get a CAT scan.” The alarm bells went off then. I said, “What did they see on the X-ray? Something’s going on here.” 

Anyway, I went and got the PET scan. Then I had the appointment the next week with him to see what he saw. He said, “It appears that you may have a type of lymphoma. We don’t know, but you need to go see an oncologist.” That’s how things evolved at that point.

Night sweats

I had some night sweats with that. I didn’t know what to think about that. Is this just part of the fever or what? I would find that it would get much worse in the coming months. I found that it would be to the degree where your night clothes were drenched and the sheet underneath you was drenched. 

I would sometimes have to get up and change clothes, underclothes and then the spot in the bed would be too wet to lie back down on. Through all that, I didn’t want to wake my wife up. We are in a pretty dry climate out here in West Texas, so things would dry out pretty quickly.

Getting an X-ray, CT scan and bone marrow biopsy

X-rays don’t raise an alarm. You’re just kind of like, “Oh, yeah, I’ve had a lot of X-rays.” But when they said, “We want a chest CAT scan.” Well, I’ve never had a chest CAT scan. Something is going on. I try to compartmentalize that, try to put it off to the side, but it’s there. It’s just nagging and you know something’s not right. 

The next week, I went in to get the report from the primary care physician. He said, “I think you’ve got lymphoma.” I went home and told my wife, and she didn’t believe me because I’m always joking and pulling pranks on her and things like that. She didn’t believe me when I went and told her. I had to insist that it was true. 

She really stepped up to bat, because I withdrew into my cave. She began to research and print things out off the Internet, and I didn’t want to read them. Of course, I had the upcoming appointment with the oncologist and then the bone marrow biopsy. 

When I got there, she said, “We can do a biopsy of your lymph nodes, but they’re all internal, so it’s going to be a little more difficult to get to them. We need to do a bone marrow biopsy and we can assess from that what type of cancer this is.”

The Diagnosis

Receiving the diagnosis

Then when the report came back on that, she said, “This is small lymphocytic lymphoma (SLL), which is akin to chronic lymphocytic leukemia, except this is primarily in the lymph nodes and not detectable at this stage in your blood. What I would recommend is that you be treated with R-CHOP.” 

We remember the acronyms from when our son had cancer. We remember the acronyms and that they had meanings, and we recognized some of the drugs that she mentioned that I would be treated with.

I went home with the feeling that my days were numbered. Of course, I’ve always known my days were numbered, but I said, “They’re very short.” I went home with the thought, “I got to go through this.”  

Within a day or so, my wife contacted the children, the grown adults, and told them what was going on. She came back and said, “The kids and I want you to go to MD Anderson.”

Processing the diagnosis

I crawled back into my cave and just accepted the fact that I was going to have to go through chemotherapy. My days were numbered. It was a dark place and just almost a resignation that this was the end. 

My wife came, and still I had not read any literature. I had not looked on the Internet. I was scared of what I would see. My wife came, and she had printed some things out that I didn’t want to see. She said, “The kids want you to go to MD Anderson.” 

With our history with our son having had cancer back in the ’70s, we were familiar with MD Anderson. We knew it was the right place to go. I knew it was the right place to go, but I just felt so lousy. It didn’t feel good, and I didn’t want to make the 400-mile trip. 

She stepped up as the caregiver and called MD Anderson and made an appointment. She didn’t even get a referral. She just made an appointment and said, “I got you all lined up. We’re going to go down there, and we’re going to go there in a week-and-a-half.”

It’s one thing when somebody else gets a diagnosis, but when you personally get the diagnosis, in my life the future just disappeared. Even at that age of 66, the dreams I had of being a granddad and what was to come and things to enjoy since I was newly retired — those all vanished. 

All of a sudden, what life I had left, which I thought was maybe 15 years, shrunk down to maybe just months. I didn’t know. I certainly knew I didn’t feel good, and something was wrong. The doctors were right. I did not feel well.

»MORE: Patients share how they processed a cancer diagnosis

Did you feel like you were losing things you had been looking forward to?

Yeah. We had retired where I was working in West Texas, out in the country on 6 acres. There was an extensive area to mow, but there were things we were involved in. 

We were involved with our church, and we were joining with an acoustic group of musicians singing at the rest home. I was enjoying getting to take my guitar, and there were dulcimers, violins, other banjos and other kinds of instruments. 

He said that we can’t cure this disease, but we can manage it. All of a sudden, the glass for me was half full again.

All of a sudden you’re sick, and you need to stay away from people. When I saw people, I was not one who held it back or didn’t share my diagnosis. I shared that with other people. All of a sudden, it’s like you’re marked, and I felt marked.

I felt like, “I’m here, and I just want to tell you that I’ve got this diagnosis of small lymphocytic lymphoma.” Of course, nobody knew what that was. It is a rare disease, just like its counterpart CLL. They’re rare diseases. 

Can you describe what you meant by feeling “marked”?

We’ve all been through that in our life where somebody we knew was diagnosed with a terminal disease. You have different reactions. When you hear that, you don’t know how to respond to that person or to their family. Sometimes you’re asking their family members, “How are they doing?” because you’re uncomfortable asking that person how they’re doing. 

We’ve seen through life experiences that some people withdraw from you. Some people that have been friends don’t know how to cope with it, so they pull back. I was pulling back, too. It was a difficult time.

Processing what it means to live with chronic cancer

I finally saw the specialist at MD Anderson, and the phrase that he said to me brought hope back in my life. He said that we can’t cure this disease, but we can manage it. All of a sudden, the glass for me was half full again. It was not half empty. I found that to bring hope to my life. 

On that trip we made to MD Anderson, I decided to start looking for things that were humorous again and find things to laugh about. As I stood there in the medical clinic at MD Anderson and I looked at the list of doctors, I began to laugh. One of the doctor’s names was Dr. Fanale. He was not my doctor, but that was one of the doctors. 

The doctor at the top of the list, the one in charge, was Dr. Kwak. I had to take a picture of that and post it on my Facebook page to let folks know that I was finding things to laugh about again.

We stopped and ate at a restaurant. Of course, camo or camouflage-type dress is common in Texas, and I looked over there and saw these folks with camouflage. It made me think of the TV show about the guys in Louisiana that sell the duck calls. I thought about them. Things like that were bringing humor back to my life.

Can you explain the power of your doctor saying you could manage the cancer?

I think I was thinking he was going to say, “We can just buy you some time.” But he turned it in a positive way to say that we can manage it. 

I did not have any comprehension of the research that was going on that was going to begin to explode in the treatment of CLL and SLL, which certainly has exploded in the last 10 years. It would bring so much hope for people that are diagnosed with those diseases. 

To that point, the treatment was going to be chemotherapy. But as we sat down and talked — the doctor and I did, and my wife and son were with me — he said, “Let me just talk to you about some of the treatment options. We’ve got the traditional chemotherapy that we can treat you with, or we can treat you with some novel therapies, targeted therapies.” 

We began to see that there were some other options. We were up into the time frame of November, and he was ready to start treatment because I had 70% involvement in my bone marrow, and my blood counts were beginning to drop. The B symptoms, as they say, would be getting worse: losing weight, the fevers and the night sweats.

Treatment and Side Effects

Deciding to Start Treatment

Testing for treatment options

He gave the option to start treatment in December, and I said, “You said that this is a disease that we don’t have to treat right away? We can defer. How about if we start in January? I would like to enjoy Christmas.” That’s the way that took place. We went back to MD Anderson. At this point, we were going to MD Anderson every month. 

Now I digress a little bit, but you go from where you’re comfortable, the doctors you’re comfortable with. Here you go to the big city, and you go to the parking garages, and you go to the freeways. All that, to me, was like a maze. As we age, we’re not as capable of negotiating those kind of traffic jams and problems you have. 

It’s like a great sigh of relief came when you get the car parked and stop and take a picture of the parking lot number so that you remember where your car is when you get ready to come back to your car. 

We were having CAT scans, and I had PET scans, bone marrow biopsies and blood work. I’m sure at some point in there I had an X-ray, and then at some point in there I’m sure I had an EKG. They wanted to be sure that the kind of drugs they were giving me would not interfere with that. 

Discussing treatment options

There we were, going to start in January, and we discussed the options. It was chemotherapy or a novel therapy. The doctor said, “We’ve got 2 drugs that have had some benefit for this type of cancer. One of them is Revlimid. The other name for that is lenalidomide. It’s a common treatment for multiple myeloma. The other drug is Rituxan.”  

Of course, those didn’t mean much to me. Some folks have a long watch and wait. During that time, they can research and see what the different drugs are and how they interact and so forth. 

I was so naive that the Rituxan went in on an IV, so I thought that meant I was actually getting chemo. I didn’t understand that it was a monoclonal antibody, and it was not chemo. I got Rituxan and Revlimid. I was getting the Rituxan IV every week, so we stayed there locally.

We were going back every week to get another infusion, and this stretched out for about a month. Then after that, we were coming monthly for the IV and to get a refill on my pills, which were the Revlimid. 

Changing treatment

At the 3-month mark from the time we started, the doctor said it’s time to do a CAT scan and see if this is working. The results came back, and we sat down with him. That was in April of 2014, and he said, “Okay, what we’re seeing is no difference.” 

I said, “Well, that’s good, isn’t it? I mean, they haven’t grown.” Here I am, the guy with a glass half full of water. 

He said, “No, no, that means we need to try something else.” He said, “There’s a new drug that was just approved by the FDA, but it’s approved for second-line therapy.” I had failed Revlimid and Rituxan, so I was ready for second-line therapy. 

We began with again repeating the Rituxan every week (and then stretching it to every month) and taking the ibrutinib every day. That’s how that all started in April of 2014.

»MORE: Read more about ibrutinib and other patient experiences

Over 8 years later, are you still on ibrutinib?

That’s right. I’m still taking my daily pill. As I say, a pill a day keeps the cancer away. In some ways, to me, it’s not too much different than the person who’s a diabetic and has to get insulin every day or some other type of chronic disease. 

I choose to look at it in a positive way. I know that this may not work forever. I know it’s got some side effects, and we don’t know for sure what the long-term side effects are. 

God bless those folks that were in clinical trials, because those pioneers that took this — some of them it worked for them, and for some of them it didn’t. For some of them it’s still working, and they’re at 10 years on this drug. They continue to bring me hope that this will continue to work for me. 

In the meantime, I’m on the very first of the BTK inhibitors (ibrutinib), but since then, there have been several other ones that have been developed. There are second generation and third generation ones that have fewer side effects and are easier for people to take. It brings hope for other people. 

Besides that, there are other types of treatment that are targeted or novel that are not chemo. They know now that chemo’s probably not the best treatment. Before ibrutinib, the standard of treatment was FCR. That still is the standard and probably is in some other countries. Fortunately, in the U.S., we’re able to move on to other options.

»MORE: Read more about BTK inhibitors

Side Effects

Balancing side effects and new treatments

Back in about 2015, I was taking ibrutinib, and I was at a Patient Power conference at MD Anderson. Dr. Michael Keating, who is one of the pioneers of treatment and drugs, was answering questions. 

I asked the question, “Since a bone marrow transplant or stem cell transplant is the cure that we would have to lean on if everything else quits working, but at a certain point we get too old to take that, why don’t we just do that up front? Why don’t we get the stem cell transplant up front?” 

He said, “Because these other drugs that you’re taking have so much fewer side effects, so much less risk. There’s a lot of risk with a stem cell transplant or bone marrow transplant.” 

I was reading the blog of Dr. Brian Koffman, CLL Society, and what his journey was like and what was working for him. He was one of the pioneers of ibrutinib. There was another fellow, Terry, who had a blog going back to year 2000 about the different drugs that he was on even back then. To be able to read those real-life stories, just like you’re creating with these videos, gave me hope.

Being able to take treatment at home instead of going to a clinic

I started well for the first line. I had a pill and the infusion. I didn’t have to go in and get an infusion once we got the infusions behind us. Life was much more normal than it would be with every week or every month having to go in and get IVs. Of course, every time you had to go get an IV, you had to have a blood count to go with it to be sure that your counts were up high enough to proceed with that. 

When I started on ibrutinib in April of 2014, I think even my doctor was cautious, too, because all he had to read was the clinical trials from a medical standpoint. But he didn’t know how long it was going to work. I was going back every month to get the infusion. I also was having blood work done. 

Of course, that led us to that 3-month point when the CAT scans showed that wasn’t working. Even after we proceeded forward with ibrutinib, I was still getting a CAT scan every 3 months. With SLL, the disease was hidden in my body. There were no swollen lymph nodes on my neck to observe. It was lymph nodes that were internal, so the CAT scan gave an option to see what was going on. 

They would look at the CAT scan and compare it to the previous one to see if anything was changing. Did the lymph nodes decrease in size? And once they had, were they staying at that point? Thankfully, I only have to get that CAT scan once a year now.

Side effects of treatment

If you’re on Facebook with a CLL group on there, you’ll see people talking about the side effects that they’re having. I had a lot of those. I had the achy joints. I had the sore muscles. 

At one point, my knee hurt so bad I thought that I was going to have to have a knee transplant. I said, “Let’s hang in there. It’s probably just a side effect.” Any time I stood up or anything, it just hurt. I had that happen a couple of times, but thankfully, that pain would just vanish after about 3 days. Then the next day it was almost like a memory. If I didn’t remember it, I didn’t even know it had happened. 

Then after some period of time, I began to notice my nails were splitting. I had to be careful when I was prying anything with my fingernails [so I didn’t] pull a nail loose or split a nail. Then I began to keep my nails much shorter and to file them if they got rough edges and things like that. That’s still an issue. 

My hair was so straight and normal in my perspective, but it became frizzy and wild. My wife just finally said, “Just cut it all off.” That’s what we did. There’s some hair up there, but not a whole lot of it.

If I had it growing out, I would look like Albert Einstein. I would look like those pictures of him where he had the wild and crazy hair. That’s kind of how it evolved. 

Having those side effects, you find yourself comparing with other people through the different forums and encouraging other people. For some folks, the side effects are so overwhelming they just can’t go on. They have to change to a different treatment. 

»MORE: Cancer patients share their treatment side effects

The danger of low neutrophils

The first dangerous side effect that I had was picked up at the 3-month point. When I went in for blood work, my neutrophils were down, I think around 600 or so. The neutrophils are like the number one fighter in your immune system. 

I’ve got a friend right now over in England that’s in the hospital. The neutrophils can get low enough that if you’re running a fever, you can become septic really quick. You have to be really careful. 

Fortunately for me, the doctor said, “Okay, we’ve got something we’ll try with this. We’re going to give you a Neupogen injection.” Oh, boy, here’s another shot. As a cancer patient, you’ve been stuck every which way but loose. 

I said, “Well, here’s another one.” 

He said, “This one goes in your stomach. It’s just subcutaneous. It doesn’t go very deep, and it’s a little bitty needle, so just a little sting.”

It was easy enough that they gave me one there, and then my wife was able to give me the next 2. By then my neutrophils were beginning to climb back up, so fortunately I was able to rebound. 

But some folks don’t. Some folks have a harder time with that, so some folks have to have infusions if their platelets or various blood components get too low. You just have to be careful when neutrophils get low. You have to be careful about being around people. You have to be careful about eating food that hadn’t been cooked. 

That was just another one of the side effects that you have. Some folks have rashes. I have some rashes, but I don’t know if they’re caused by the SLL, if they’re caused by the treatment I’m on, or if they’re caused by something else.

Continuing to Monitor

Regular blood work

I realize that with the treatment I’m on, the cancer is not gone. I still have some of the side effects of the cancer. I still have night sweats every once in a while. They’re not really bad. 

They looked at my blood at MD Anderson. They said that I have 1.6 cancer cells in a flow cytometry test. That’s like 1.6 in 10,000, so that means it’s still there. You take me off of the ibrutinib, and it’ll come back. You just keep on taking that pill a day.

I get blood work done twice a year at MD Anderson on a 6-month interval, but my doctor has asked that I also get intermediate blood work done at the 3-month and the 9-month marks. I do that through my local primary care physician. 

Other issues to monitor

You did bring up the kidney cyst, and he referred me to a pulmonologist there, who reviewed the CAT scan and so forth. They said I could follow that locally, so I see a urologist once a year here and take them the CAT scan. 

With the pulmonary issue, something new has come up in the last 4 years. They solved it back in 2013 on those early CAT scans from some issues in the lungs. I’m a non-smoker. As it moved forward, the pulmonologist told me that it’s idiopathic, which means they don’t know what caused it. Idiopathic pulmonary fibrosis.

Anyway, we just track that. I hope it doesn’t take me out eventually, but you just go with what you got. Of course, that’s one of those things I went back to the doctor at MD Anderson and said, “Is there anything in the side effects of this drug that would point to this being the cause of this?” That’s, I think, the question anybody would ask. I would look on the Internet and try to see if I could find anything in my layman’s understanding that would point to that. 

I do that usually every year before or every 6 months before I go back to MD Anderson and see if there’s anything there that we need to talk about. I realize he’s got a plate full of patients besides me. You’ve got to ring your own bell when you’re there and bring up the questions you have.

 

Are your kidney cysts and pulmonary fibrosis related to your SLL?

No, it’s not. Apparently the kidney system is not that uncommon, according to the urologist. Even my cancer doctor said that any issues from that cyst will not bother me in my lifetime. 

Of course, then if you look at that from a negative way, what does he mean by “my lifetime”? Does he know something I don’t know? There’s always a comment on that report every time I have it done. It’s happening in both areas.

Self-advocacy

Certainly, your doctor is the medical expert. You really need a doctor that can explain to you in your understanding what’s going on. There are things that concern us. If you and your doctor differ about the route you’re going to go in the treatment… For some folks, you change doctors. 

I have not been to that point. I’m comfortable with my doctor. He’s probably in his late 60s now, so I know he’s got a lot of experience in treating different cancers. As a specialist, he treats more SLL patients than anybody else I might go to in the Southwest, so I trust his judgment. 

Like you say, with new drugs, there are new side effects and issues you’re dealing with.

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

Getting a second opinion

I’ll just backtrack here a little bit. We had the experience with our son that when you had a side effect or you had an issue, your local doctors would say something. When we got to MD Anderson to review what we had heard, we found out that they were the experts. They understood what was going on in a much better way than our local doctors. I believe that’s still true today, just by the fact that your doctor is a specialist. 

Usually in those areas, some type of teaching facility like MD Anderson, they treat a much greater number of patients.

They can also question other doctors in their facility that are treating similar patients to see, “Are you seeing this?” In my case, a pulmonologist referred me to a pulmonologist there locally at MD Anderson that I could talk to about what was going on. She was used to dealing with cancer patients and the issues they had related to your lungs.

Being a Caregiver and Lessons Learned

Lynn’s Experience as a Caregiver

Seeing a specialist

We certainly became advocates for anybody that had cancer to go see a specialist. If there’s any hope, it’s going to be from a specialist. Not only because of their knowledge, but they’ll know what the latest treatments are. Often, a doctor in a remote area may not be up to date on what has evolved in the last 6 months or 12 months. 

There are doctors that meet at these national and international conferences, and then they review the results of the clinical trials and what they’re seeing. From our perspective with our own son, we would definitely encourage anybody dealing with any kind of disease to go to where the specialists are. 

At one point, my doctor at MD Anderson said, “You seem to be doing well. If you want to go back in the care of a local oncologist, you can.” 

I said, “No, I want to stay with you.” We laughed about it later, but I said, “We’re not dealing with a common cold.” To be fair about it, it probably wouldn’t be a bad idea for me to have a local oncologist in a supporting role. [I would] still let the doctor in Indiana be the driving force. I think that’s probably a wise thing. I haven’t done it, but as you get older, it’s harder for you to travel distances. 

As time has gone by, I’m aware of some other doctors. There’s a Dr. Awan over at the Southwest Medical Center in Dallas who is well thought of, so that would be an option for me. At MD Anderson, there are probably a half dozen or more doctors there that if my doctor decided to retire, they could just step in and pick up without skipping a beat.

Lynn’s son’s 1st symptoms

He was 3.5 years old, and we were with some friends at the swimming party. We noticed that his stomach was very swollen like a malnourished child. We said, “What is going on?” 

We went to his pediatrician the following Monday. Of course, the doctor was very wise and an older doctor. He knew this was a bad thing. That went from there to him being in the hospital locally there, where we lived in Corpus Christi. He was there for a week. They were running various tests. 

There were no CAT scans back then, so it was just blood work — maybe some type of a sonogram or something like that, but no CAT scans. Finally, the doctor, his pediatrician, told those doctors, “You’ve got to step up. This kid is getting worse and worse.”

The diagnosis

At that point, they did an exploratory surgery, opened up his abdomen and found a massive tumor in there. They took biopsies and so forth and then gave us the name of a local oncologist. We said, “We want to go to MD Anderson.” 

When we finally got to MD Anderson, for some reason — we don’t know why — the biopsies were not usable. That’s why “undifferentiated” was the diagnosis. The doctor at MD Anderson said, “We hope this might be a Burkitt’s tumor,” which was that tumor found in children in Africa.

Anyway, it never was for sure what that was. He went through treatment and went through a relapse. We had him for 28 more years, and we were so blessed to have him for those 28 more years. 

The cancer in the end did not come back. Actually, he passed away because of the damage of one of the drugs. He was like 3.5 years old. One of the drugs damaged his lungs and eventually his heart.

Advice of seeing specialists as a caregiver for any diagnosis

Even to this day, to somebody who has a child with some type of cancer, we would say go to MD Anderson if you can, or go to UT Southwestern. Go to one of the places where they have the experts. You can keep your doctor locally as a part of your team. 

We went through this with my brother-in-law. He was diagnosed with pancreatic cancer, and we said, “We’ll take you. We’ll take you to MD Anderson if you’d like to go.” We did make several trips with him, and it’s a very difficult cancer to treat. He lasted 9 months. You got to try. You’ve got to look at all your options.

Emotional and mental impact of being a caregiver and then being the patient

When the cancer diagnosis comes, I think we all look at it from our own perspective. We look backwards at people we’ve known, and so often, people that we’ve lost, people that passed away from cancer. 

I knew there was hope with some types of cancer. I knew that they were beginning to cure some types. When I heard that word, “lymphoma,” it was like the word “leukemia,” a very scary word. 

So many other folks that get that diagnosis look at it all of a sudden as the person that has it, whereas before they were looking at other people that had it. They remember that experience, what happened, and what worked or didn’t work. It’s a tough time when that diagnosis comes for you.

Reflections

Looking on the bright side

Even with an SLL diagnosis, if the doctor were to say at my next visit in August, “Okay, you’re beginning to relapse. We’re going to have to start looking at other options,” I must say that that would be a disappointment. It would be a downer. 

I think after kind of having a little pity party, I would begin to also to look at the bright side. There are other treatments that have a lot of promise. Newer drugs have been developed. There are drugs that are being given in combination that, for some folks, are at least getting them so deep in remission that the disease is not detectable, and it’s questionable whether it will ever come back. 

Then there’s CAR T that Dr. Brian Koffman had, and Deborah Sims down in Australia had that as well. Both are doing very well. It’s not always a cure, not always even a remission, but still there are options. You take them as they come.

Benefit of watch and wait

One of the things I know a lot of people worry about with watch and wait is that the time is going by. But this particular disease (a chronic cancer or lymphoma), it just depends how you’re feeling at that time, what your blood counts are doing, and what other risk you have, because they often will watch and wait. 

Each year that goes by means newer drugs are being developed and new clinical trials are progressing. That means if you’re not being treated today, but your treatment’s another year or 2, 3, 4 or 5 down the road, there may be new treatments or new combinations that were not even thought about when you were diagnosed. 

Even for me, ibrutinib has bought me 8 years. There are other drugs that have come along and have been proven to be helpful, like venetoclax, that would be an option for me at that point.

Have you thought about getting to the point of undetectable minimal residual disease?

Yes. I have looked at the other options and have questioned the doctors about it. We’ve also even had a clinical trial nurse from MD Anderson join us on one of the CLL Society monthly calls and talked about the clinical trials that might be an option to add another drug to (in my case) ibrutinib. 

One of the things that all of us eventually bring into this mix is our comorbidities. I mentioned that the issue of the pulmonary fibrosis makes it perhaps difficult to qualify for a clinical trial. 

Another issue I have is I’m on a blood thinner because I’ve developed blood clots. Before I was diagnosed with cancer, I had 2 occasions where I had blood clots, and I found out that I’ve got a genetic issue with my blood that makes it more likely that this could happen. It’s not really common. 

Anyway, those 2 things (the lungs and on a blood thinner) would make it more difficult for me to be approved for an additional drug. My doctor kind of took a risk, and I did, too, when he put me on ibrutinib back in 2014. 

A lot of those patients would not be put on ibrutinib if they on a blood thinner because one of the side effects of ibrutinib is bleeding in the brain, subdural hematoma. I’ve told my wife, “If I fall and hit my head, no matter what I say, put me in the car and take me to the emergency room. I need to have a CAT scan.” Bleeding like that could certainly happen even if I wasn’t on ibrutinib.

What advice do you have for other people in your situation?

I would say certainly be open to go to a specialist, because it made the difference for me in getting the latest treatment that was available. If I had stayed here, the doctor was going to give me R-CHOP, which is not the right treatment at all. You won’t find that as a treatment. 

My doctor at MD Anderson said that hasn’t been given for years. By being at MD Anderson, I was at the right place to begin on the drug of ibrutinib. Now they know that ibrutinib outperforms FCR, which was the long-time gold standard for this type of cancer. For some folks, it appears to have been a cure on the FCR. Anyway, I would say that it’s important to get to a specialist. 

Things will get brighter.

Finding a community

I think the other thing I would say is, “Find yourself a community of other people dealing with cancer.” You can find groups on Facebook. I have a group that I joined, Blood Cancer Uncensored, on a weekly conference call. We’re friends that get together and talk for about an hour and a half when we can make it. It just warms my heart to be able to talk to people and to be concerned with others about the things they’re dealing with. We have not only CLL or SLL; we have other types of cancer. 

Likewise, CLL Society, I join with a group out of the Dallas-Fort Worth area on a monthly basis. We talk about people and give an update on what’s going on with their cancer. If you want to talk, you can talk. I don’t want to really say anything. You can do that as well. 

»MORE: Join other patients and caregivers on The Patient Story social media community

Helping find doctors

I’ve also joined with another group called AnCan, headed up Michele Nadeem-Baker. It’s a good group. It’s give and take, and lots of times folks will say, “Let me give you an Internet link that you might want to follow. There’s a study here that might be of interest to you.”  

I like to try to help people find a doctor. It’s one thing to say, “I recommend a specialist.” Well, where would I find a specialist? You can go on the CLL Society website, and they’ve got a list of doctors there by the states that are specialists in this area. Likewise, [you can look for] whatever type of cancer you might be dealing with. 

The specialists are going to be at the university teaching facilities. That’s also going to be the place where you can get research. The community doctor cannot put you on a clinical trial, because it’s not available through that location. 

You’ll need to go to the specialist to see what trials might be available. I would encourage you to. You may have a pity party. Things may be dark. But I really think that when you get to talk to a specialist, things will get brighter

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More SLL & CLL Stories

Lynn B.



1st Symptoms: Prolonged fever and night sweats



Treatment: Rituxan infusion, ibrutinib daily

Nadia K., Small Lymphocytic Lymphoma (SLL)



1st Symptoms: Rash, lump under arm, fatigue



Treatment: Ibrutinib and acalabrutinib

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Nadia’s Small Lymphocytic Lymphoma with Unmutated IGHV Story

Nadia’s SLL story proves how important perseverance and self-advocacy are when your health is on the line.

When Nadia started experiencing rashes, fatigue and unexplained neck pain, she listened to her body’s warnings and visited her general practitioner.

This started Nadia’s fight to be taken seriously by her doctors. Then 6 months, 4 doctors and 2 biopsies later, she was diagnosed with small lymphocytic lymphoma.

Thank you for sharing your story, Nadia!

• Name: Nadia K.
• Diagnosis:
  • Non-Hodgkin’s lymphoma
  • Subtype: Small lymphocytic lymphoma
    • Unmutated IGHV
• 1st Symptoms:
  • Rash
  • Lump under arm
  • Fatigue
• Treatment:
  • Ibrutinib
  • Acalabrutinib

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

VIDEO: 1st SLL Symptoms and Medical Gaslighting

Introduction and 1st SLL Symptoms

Tell me about yourself

I haven’t worked since I got the diagnosis. Before that, I was actually an administrator for a church where I live. I was working on my master’s thesis in English at the time. 

Outside of that kind of work and academic stuff, I am fairly artistic. I was a Zumba teacher at one point, and I do lots of hula hooping and photography.

Can you describe your first SLL symptoms?

The first thing is that I started getting a rash on my lower legs, and it was worse at night. Sometimes I would get welts or bumps with it, and sometimes not. I didn’t know what was going on. 

I thought, “This is really strange, and why is nobody else in the house getting this if there’s insects or something?” That went on for a while and then kind of eventually calmed down. Then the rash that I previously had started spreading.

A Series of Doctors

What happened with your first doctor?

Initial visit

I went to the general practitioner that I had previously seen for the rashes and said, “I found this lump under my arm. It didn’t go away.” He felt that lump. He didn’t examine me anywhere else, and he said, “We’ll send you for a mammogram, an X-ray and some blood tests.” 

I had also gotten really bad anxiety out of the blue at that point, and I now know why and what it was. I also went on medical leave that same day because I had gotten this anxiety and fatigue, and I didn’t know what was going on. 

Then I started a 2-week medical leave, and these tests were ordered. I went for the mammogram, I went for an X-ray, I went for the blood test, and everything was normal. 

Follow-up

When I went back to that doctor for the follow-up, he said to me, “Yeah, there’s nothing wrong with you. You must have just had an infection.” 

I tried to tell him, “No, wait, there’s more I’m concerned about.” These rashes and things were starting to cause alarms to go off. 

Anyway, he cut me off, and he said, “I can tell that you’re just one of those anxious patients who needs a little more coddling.” He shooed me out of his office without even letting me tell him about what the other concerns were. 

I left his office, and my anxiety didn’t go away. I now know that that’s a common symptom of types of physical illness. Your body is trying to communicate to your brain that something is going on, and you get anxiety as a result. That’s what my anxiety was.

The more I got told that I was just anxious, the worse my anxiety actually got because I was getting quite sick, quite fast, and it felt like nobody was really believing me.

What happened at your second doctor’s visit?

I went on a short vacation on the Labor Day long weekend. I saw pictures of myself we had taken during that vacation. My abdomen didn’t look right. I just had a really foreboding feeling. 

When I got home, I went to a different medical clinic that a friend had recommended, and I waited in line to see a different doctor. I said, “I’m going to make someone listen to me and to these other concerns.” 

I saw the doctor that day, a new guy who turned out to be wonderful and one of my biggest advocates. “Yes, I have some anxiety, but I also have all these physical symptoms,” I said. “This previous doctor didn’t listen to me, and something’s wrong.” 

He did a physical exam, and he said, “You don’t just have a swollen lymph node under your arm. You have them all over.” His face looked alarmed. He had allowed me to tell him about the rashes and all the other stuff. 

He said, “Okay, we’ll order some additional blood tests that weren’t done before.” They were for autoimmune illness and different sorts of things. Then he said, “I’m going to send you for urgent medical assessment.”

Can you describe the impact of being heard by your second doctor?

Getting a second opinion for your SLL symptoms

The first doctor was kind of my stand-in GP because we have a doctor shortage here. He’s the person I’d always seen. Being cut off and silenced was kind of scary. Of course, a lot of people, including me, are intimidated by doctors. 

I didn’t know what to say to him, but that feeling just didn’t go away. I was like, “I need to get a second opinion or someone else to hear me about these other things.” 

He was treating me like I was a hypochondriac or some kind of hysterical woman.

When this other guy did, I told him a bit about myself. I told him what I did for work, what I was doing in school, and we had some commonalities. He was just really compassionate, and he actually listened and took the time to hear what I was saying and do a physical besides just under my arm. 

It was something else to actually be heard. When he told me he was going to send me to urgent medical assessment, I got really scared because I was like, “I need to do that. It’s not what I want to do, but at least he’s going to get it done for me.” 

He told me all these tests he was going to do. He mentioned these different illnesses, Lyme disease and autoimmune stuff. I said, “But could it be lymphoma?” 

Regular Check-ups

I was like, “Okay,” and then he said he’d call me later to follow up. Even that night after I went home, he called me on his cell phone from his car on his way home to see how I was doing. He continued to follow up and text with me throughout to check on things. 

When I told him some of the other things that happened down the road where I wasn’t being believed and stuff, he got quite upset. Anyway, he then requested a review of my case after that because of the things that happened later.

His name is Dr. Jeremy Etherington. He’s lovely. He had 2 motorcycle accidents after I met him, and he still didn’t forget about me and texted me when he got back and said, “Hey, how are things?” 

When I finally did get the diagnosis, he said, “I see hundreds of patients, dozens every day. When you came in, I could tell by your concern and the things that I was seeing that this was not just a cold or some minor thing.”

What happened when you visited your third doctor?

In mid-September, I went to the urgent medical assessment clinic at the hospital where I live to see an internist, whose job it is to look at my symptoms and then try to figure out what’s going on. I call him Dr. T. because his last name starts with a T.

I was sitting in the room. He walked in, and he was this huge man. He said, “Hi, do you know why you’re here?” 

I said, “I have multiple swollen lymph nodes. So far I’ve had 2 rounds of blood tests, a mammogram and an X-ray.” I basically said, “I’m here because I have generalized lymphadenopathy. We can’t figure out why.” 

He looked at me, and he said, “I don’t believe you have swollen lymph nodes.” Then I was in shock because I thought it was his job to figure it out. 

I had to tell him to come feel where they were so that he would believe me, and then he did. He was quite gruff, and he said, “Okay, we’ll do these other blood tests, and we’ll do a CT scan.” He was extremely gruff and extremely dismissive. 

Feeling unheard

I feel like he was treating me like I was a hypochondriac or some kind of hysterical woman. I thought, “Why is he talking to me like this? Why would they send me here to waste your time if I don’t have swollen lymph nodes?” That was bizarre, and I can’t explain it. I still kind of want to write him a letter to just tell him. 

Actually, I didn’t go to the first CT scan that he ordered because I had a job interview that day already. I was also really scared of getting a CT scan, and so it was a cancellation. I said I couldn’t do it. Then they pushed it ahead. The next one was October 4, so I went to that.

SLL Symptom Progression

How were your SLL symptoms progressing?

While I was waiting for that CT scan, I was at work one day, and I started getting this pain in my hip. I got up from my desk, and I fell to my knees and couldn’t stand up because I had such bad pain in my hip. 

My work had already seen me going through all these tests and doing all this stuff. I was like, “Something else is going on now. I need to go home and get it checked out.” I got home, and I laid on the floor for a couple of hours because the pain was so bad that I couldn’t get up. I crawled into bed. 

First thing in the morning, I went to the clinic, which was the first doctor that I had seen about the lump. He figured that I had shingles because when I woke up, I’d gotten a rash where the pain was. I’d never had that before. That was like September 29th. All those other symptoms were getting worse.

CT Scan

Then I had the CT scan on October 4th. Again, I came home from that appointment, and I don’t know what it was about the CT or the contrast, but my neck then flared up in a way that was even worse than it had been before. I’d actually had this burning pain in my neck for a while, but I thought it was back pain or something. 

Within a day or 2 of getting that CT scan, Dr. T. phoned me. He said that the radiologist who looked at the CT scan phoned him before he even sent them the report to say, “You need to get this woman a biopsy for lymphoma protocol.” 

He wanted to biopsy lymph nodes in the left side of my neck. That CT scan found enlarged lymph nodes in my neck and in my armpits and throughout my abdomen. It said that I actually had what they call a conglomerate, a large mass of lymph nodes in my abdominal area and throughout. That kind of explained my swollen stomach.

Were you relieved that there was an explanation for your SLL symptoms?

At least now they believe me that something’s going on. That’s what I felt. At least now they believe me that something’s going on, because they can see it on this image. Now they know, and they’re going to have to figure out why. 

Of course, I was still hoping at that point [it wasn’t cancer]. They said there was an autoimmune illness called sarcoidosis. I was kind of like, “Please be sarcoidosis.”

I’d had 3 sets of blood tests, and everything was normal. The X-ray and the mammogram were normal, and then that CT was really the first thing that showed definitively that something was amiss.

VIDEO: Needle and Surgical Biopsy for SLL

Needle Biopsy

What happened at your core needle biopsy appointment?

He said, “I’ve been doing this for 30 years, and if that was my CT scan, I wouldn’t have the biopsy. I don’t think it’s necessary, and I think you’re barking up the wrong tree.”

That was for a core needle biopsy, which is the bigger needle, and he said that there was no accessible lymph node that was big enough to take a core sample from. He said that my lymph nodes were on the larger side, but not abnormal in his opinion. He told me that he didn’t think that the core needle biopsy was medically necessary.

I didn’t get the biopsy, and I left. I wasn’t sure if I had done the right thing or not done the right thing, but that doctor was just really convincing that he thought it was medically unnecessary and didn’t agree with them doing it.

Why did you end up contacting the internist about the biopsy?

The lovely GP, the second one that saw me that had been texting me, knew I had been going for the biopsy that day. He actually texted me in the morning to say, “Hey, I’m thinking of you. I hope it goes well.” He texted me in the evening to be like, “How did it go?” 

I texted back, “Actually, this is what happened. They didn’t do it.” He got livid. Then I said, “What should I do?” 

He said, “You need to get a hold of the internist and tell him what happened. He’s going to find out anyway, but get a hold of the internist. Tell him what happened and ask them to reschedule.” 

The next day, I phoned the internist who had ordered the biopsy on the recommendation of the radiologist who looked at the CT scan. I phoned him and said, “They didn’t do the biopsy because they didn’t think it was medically necessary.” 

He got angry. What he said was, “I don’t want to get in trouble if there really is something wrong and we miss it.” It wasn’t like, “I’m concerned with you as a patient.” It really came across as, “I don’t want to get medical malpractice.” He said, “I’m going to send you for a surgical biopsy.” 

Then I said, “Wait. You make that appointment and get that referral done. In the meantime, while I’m waiting, can you send me back again for the biopsy? This time, I’ll make them do it while I’m waiting. Maybe that’ll show something in the meantime that I won’t have to have my neck cut open.” 

He said okay. He referred me to the ENT surgeon, and while we were waiting, he’d send me back for another needle biopsy.

Second needle biopsy appointment

I went back to the same hospital on October 30th, so 2 weeks later. Same hospital, but different doctors doing the procedure. This was a younger guy. 

He walked in the room, and he said, “Nadia, why are you here?” I told him all my symptoms. He said, “I read your report, and I looked at the CT scan. I looked with the previous doctor that you went to for the biopsy.”

He said he agreed with the doctor that didn’t do the biopsy 2 weeks previously, that it was medically unnecessary and they were barking up the wrong tree.

He said, “I know you’ve been having these symptoms, but I don’t think your lymph nodes are that swollen.”

In a sense, I did feel crazy… I know it’s something, and nobody is believing me.

For the mass that the CT scans saw in my abdomen, or the conglomerate, he said he didn’t think it was really a conglomerate. He thought it was just that I didn’t have much abdominal fat, so the nodes were just really close together. That’s what he said. 

Convincing the doctor

He even took me in the back to show me his big screens with the CT, and I got to see the inside of my body and stuff. I was like, “Wow.” He showed me all the nodes, and he said, “Oh, these actually aren’t that big.” 

I just said, “Well, okay, I know that you know that, but the person that first saw my CT didn’t even wait to write a report. He phoned the doctor and said, ‘Get her to have a biopsy.'”

I said, “If you don’t do this biopsy, they’re going to cut my neck open. Can we please just do this first before I go to surgery under general anesthetic?” He reluctantly did it because I basically said, “Do it.”

Being Taken Seriously as a Patient

Mental health and being taken seriously

Somehow these 2 doctors — I don’t know what they’re called, but they perform the needle biopsy — took it upon themselves to look at my CT scan and say that they didn’t think it was necessary when I don’t think that that’s even their job there. I think they’re just supposed to do what was ordered. That second time, I made them do it.

I was getting more and more sick, and I could feel myself going downhill pretty quickly. Everybody was just kind of telling me that I was just anxious or treating me like I was just a hypochondriac. If you want to give somebody anxiety, that’s a good way to do it, actually.

I can’t even tell you how awful that felt to be as ill as I was and to not be heard. At that point, it wasn’t even just the doctors, but it was family and friends and my coworkers. I felt like people were treating me like I was crazy. 

In a sense, I did feel crazy because all of a sudden all this stuff is going wrong. I can’t do the things I used to do in terms of functioning, and I don’t know what’s going on. I know it’s something, and nobody is believing me. It was the most alone I’ve ever felt in my entire life, actually, and the most terrifying. 

Self-Advocacy as a Job

Luckily, I did have a counselor throughout this that I was seeing. I would go in and see him every week, and I’d say, “This is going on, and that’s going on.” He actually was a really big support in helping coach me how to talk to doctors. 

He said, “Nadia, look at this like your job. It’s your job to make them figure out what’s going on.” He was awesome. He was like my secret weapon that nobody knows about who just kind of kept coaching me to keep insisting, and he believed me.

He said for a lot of people who have some sort of mental health issue or are having anxiety, it’s very, very common to get written off by medical doctors. That happens anyway. If they think that you have anxiety already, it happens even more.

Results not being taken seriously

The biopsy was inconclusive. It said, “These cells don’t look right, but it’s not enough of a sample to make a diagnosis.” Then at that point, they recommended that I have the surgical biopsy. I went through these periods where even though they did find something, then it wasn’t being taken seriously. That was confusing. 

I don’t know how to explain this, but people who it’s happened to will know. I had a voice inside of me, which I’ve never experienced anything like before. It was some internal voice screaming at me to get help. “Get help. Get help now.” 

I just knew. I just had this knowing, so I tried to push them to get something done. When they’d say, “We don’t think that’s what it is,” then I’d be relieved for a second. Then I’d go, “No. There is something really wrong.” 

Worsening Symptoms

After the core needle biopsy came back that we needed to do a surgical one, I spent all of November kind of waiting for an appointment, and my symptoms were getting worse and worse. I started getting more night sweats, and my throat was getting so sore it was hard to swallow. I couldn’t handle having something touch my neck. 

Then I had this rash that had been mostly confined to my upper body and around my groin, but it was more minor and not painful. It all of a sudden spread all over my butt and the tops of my legs, and I got burning and quite itchy. It was just another thing that I felt like was wrong or falling apart. 

Staying Persistent

I called the internist, Dr. T. I said, “I’m having all this neck pain. It’s getting worse and worse.” 

He said, “I’m not an ENT. You have an upper respiratory tract infection. You need to go see a doctor for an upper respiratory tract infection.” 

I’m like, “I don’t have an upper respiratory tract infection.” I kept phoning his office. I’d phone and be like, “Now I’m having night sweats.” When I phoned him about the rash, he told me that he wasn’t a dermatologist and that I just needed to see a dermatologist. 

I kept phoning because I’m here going, “This is the guy who when I first saw him, said he didn’t believe that I had swollen lymph nodes and treated me like a hypochondriac.”

I’m waiting and waiting for this appointment for the ENT. I’m getting sicker and sicker and more tired and exhausted. I can barely take myself to work and all of these other things. 

I just kept phoning him because I’m like, “I have to make him hurry up because I really feel like I’m going to die if they don’t figure this out.”

Surgical Biopsy

What happened at your ENT appointment?

I didn’t get notice of an appointment until early December, and then I was scheduled to see the ENT on December 18th of 2020 for a surgical consult about the surgical biopsy. That part’s quite a fog because I was so ill at that point and just barely getting myself through the days waiting for that appointment. 

When I went to see the ENT, he felt my neck and felt the lymph nodes. He said, “Yeah, that’s not normal.” He told me what they were going to do for the biopsy, and he held up his hand. He said, “I’m going to make an incision on your neck like this.” I was shocked because I didn’t expect it to be so big. 

Then he told me that there was a risk of facial paralysis or shoulder paralysis from the surgery. That’s not uncommon. He’s a nice man, but he made a face to me. He said, “You could end up with facial paralysis like this,” and he made this weird face. 

I was just horrified. “Okay, well, we need to do this really soon then,” I said. I was terrified. I asked him, “Is this really necessary? If I can get paralysis and you’ve got to make that big of a cut?” He said it would be a really ugly scar. I said, “Do we have to?”

He said, “You have to do this.” I know they have to have a medical disclaimer, but not the way he was doing it, making faces like, “You might talk like John Crichton,” who’s a former prime minister that had facial paralysis. He was doing that.  

Waiting for the surgical biopsy

I cried. I went to my vehicle and cried and cried all the way home. It was a Friday. Then their office was closed for 2 weeks for the holidays. They said they were coming back on January 4th, that they would call me after the holidays with an appointment, and that they hope to get me in by the end of January.

I was barely functioning at that point. Of course, this is all happening during the pandemic, too. I’m at home, and I’m talking to my family by video or whatever, but I’m really quite isolated and basically just terrified by myself in my apartment. 

“How can I make it to that surgery date?” Because by that point, everything else was kind of eliminated. I can’t even tell you how sick I was. I was just like, “Okay, got to make it to the surgery date. Got to make it till the end.” That’s really a blur, that period of December.

How did you deal with the anxiety of waiting for your results?

I have a sister that I’m pretty close to that I talked to a lot. She was really there for me, and that helped. I was still seeing that counselor, and that helped. 

The other things that I would normally do to help myself cope with difficulty — hula hooping is one of them — I wasn’t really able to do much at that point because of the pain and the fatigue. 

I just basically stayed connected with the couple of people I had in my life that didn’t think I was crazy and that were believing me. That’s all I remember. I was still working at that point, but working from home. I tried to focus on what I could do with that, too, so that I had something else to think about.

»MORE: Coping With Scanxiety: Advice From Cancer Patients

How did this affect relationships in your life?

At that point, there were a couple of people that I cut out. I actually quit talking to them because I was already terrified of doctors and terrified of all the procedures I was having. Those people were not helping and trying to tell me that I shouldn’t have the procedures and also telling me that I’m just anxious. 

In fact, I did have somebody that I know tell me that they thought I was actually going crazy. They said that to me. There are certain people that I just cut, the people that really weren’t supportive, and they knew it. I quit talking to them and cut them out of my life. I only talked to the couple of people who did believe me to some degree and were supportive.

How did your surgical biopsy go?

I had surgery Friday, January 8th. When I first woke up, the first thing they did was ask me if I could move my face. Thankfully, I was like, “Yes, I can.” It was tingly and numb, but I could move it. 

They sent me home the next day. I was super squeamish about the wound, so I had a friend who was kind enough to come over to help me clean it. At that point, I was relieved because I’d finally had the surgery I knew I needed, and I was kind of preoccupied. 

I was then focused more on the recovery because it was not good for the first few days. I was focused on that and relieved that it had been done. That was like the first relief I experienced, where I almost wasn’t thinking about what diagnosis I was going to get. I was just so glad that it had been done, and some part of me felt better because it had.

SLL Diagnosis

The SLL Diagnosis

Can you describe the moment you got the SLL diagnosis?

The Tuesday after, they said, “The doctor’s going to call you on Friday.” I didn’t think much of it because I didn’t think that they would have results that quickly. I just assumed it would take longer and wasn’t too worried. Again, I was just glad it was done and focused on recovering. I wasn’t really prepared, and probably no one ever is for that. 

It was 3 p.m. on January 15th. I was expecting this call from the doctor. I told my sister and another friend that I was having that call and I’d get back to them after. Of course, I was home because it was COVID. 

When the phone rang, it was again Dr. T., the guy who hadn’t believed me. This time his tone was different, so right away I was like, “This isn’t going to be good.” His tone before had always basically been really dismissive, and he treated me like I was crazy. Then this time he sounded really serious.

He asked me if I was at home, and I said yes. Then he asked me if I was alone, and I said yes. I think he asked me if I was sitting down, and I was like, “Yeah. I knew I have something bad. What’s he going to tell me?” 

He said, “I’m sorry, I have bad news. You have small B-cell lymphocytic lymphoma.” I hear “lymphoma,” and I just know that it’s cancer.

The referral

I started crying, and I asked him if I was going to die. He said, “No, no, no, you won’t die.” He didn’t really tell me anything about the illness, but he said, “I’m now referring you to a hematologist at the BC Cancer Agency. They’ll call you next week.” 

“I really hope that you did everything that you did as fast as you could to get this done,” I said. I was basically telling him without directly saying, “I know you didn’t believe me, and I hope you didn’t mess up.”

He said, “You don’t know how many calls I made on your behalf to try and speed things up.” I don’t really believe any of that for a second. 

Then I was waiting for the hematologist to call me on Monday, like he said, and my phone didn’t ring. I think I waited till Tuesday, and it still didn’t. By Wednesday, I hadn’t heard from anybody. 

I phoned Dr. T. back and said, “I didn’t get that referral you said they were going to do. Can you please tell me the doctor’s name, the hematologist, so I can phone in and find out what’s up?” He gave me the name, and I called their office. I guess the fax hadn’t gone through.

»MORE: Reacting to a Cancer Diagnosis

What emotions come up when talking about your SLL diagnosis?

I feel sad, and I remember how scary it was. After that phone call with the doctor who told me the diagnosis, I was bawling. But after I hung up the phone, I was actually walking around my apartment saying out loud, “I’m not crazy.” 

I was upset to find out that, yes, I do have lymphoma, which is what I suspected. I also felt a sense of vindication. Now I can tell all these people who didn’t believe me that I’m not crazy and they were unhelpful. I did start telling people, and perhaps I told more people than I would have, in retrospect. 

I wanted to because all these people — coworkers and friends and my boss — didn’t all believe me. They had treated me just quite poorly, and so I told them within that week or 2 after the diagnosis that I do indeed have lymphoma. 

They were all in shock. A couple of people apologized to me. My sister even said, “Wow, we thought you were just under a lot of stress because of other things in your life.” My coworker said, “I’m sorry. We just thought you were overreacting.” 

I wanted people to feel bad for not believing me because it was months of people really treating me pretty poorly. I can’t really explain what that’s like to be treated like you’re crazy by everyone.

Once you had your SLL diagnosis, how did the first meeting with your hematologist go?

I was relieved because that first phone appointment was an hour long. I spoke to an assistant and then the actual doctor. They asked me a million questions and my whole history and my symptoms. I just felt relieved that finally now people believe me and wanted to know, so there was that. 

It was just me answering a lot of questions about my history for an hour. They didn’t really tell me a lot about the illness, but they just said, “Here are next steps.” 

They said they needed to do a bone marrow biopsy to determine bone marrow involvement. That shocked me because it hadn’t occurred to me that it might be in my bone marrow. Then, of course, I got terrified of that procedure. They told me they’d do a bone marrow biopsy and genetic tests on the cancer cells themselves. 

Then they wanted to do a follow-up CT scan to compare to the one from 4 months before to see what change there may have been in the lymph nodes. They needed to do all of this before I started treatment.

What were the results of your bone marrow biopsy and genetic tests?

They told me that I had 40% bone marrow involvement, and I was stunned. Then I thought, “Oh, that’s why my knees were burning maybe, or my hip pain. That explains some things.” 

They told me that the CT scan showed that my lymph nodes were enlarging quite rapidly from the previous 4 months. They didn’t tell me any of the results of the genetic tests, and they just told me that I needed to start treatment right away. “You’re pretty sick,” they said. “You need to get treatment right away.”

»MORE: Genetic Testing for Cancer

Choosing Treatment

Why didn’t you want to do FCR chemotherapy?

They said my only option was FCR chemotherapy. I said to the doctor, “Before we start chemo or treatment, can you just get a second opinion on the diagnosis to be sure?” 

I got that second opinion on the diagnosis on February 17th, and they told me that the guy who reviewed it added an addendum that they call it “accelerated SLL.” It was the same hospital, but different pathologists. He said, in his opinion, it fit the criteria for “accelerated SLL,” which they call “histologically aggressive.” 

He told me 2 things. He said that he doesn’t have time to read studies and that I read too much.

I requested a copy of my test results so I could see, and then it also mentioned that I had unmutated IGHV, which carries a poor prognosis. In my brain, those 2 things went off. It’s aggressive, and I have this IGHV unmutated thing, which isn’t good.

The second opinion agreed, “We should do FCR.” I told the doctor I was terrified. I was pretty scared of that and wasn’t sure that I wanted to do it. He said that he would follow up with me toward the end of February. 

Independent research

In this interim of a couple of weeks, I did some more reading because nobody really told me much of anything. That’s when I found out what IGHV unmutated status really means and how FCR chemotherapy is not so effective for that. 

I also found out that in many other jurisdictions — as well as other provinces in the country that I live in, which is Canada — they’re no longer doing FCR in cases of IGHV unmutated status because they know that it’s not effective. You have a quick relapse, and in fact, it can cause further mutations and more aggressive illness. I read all that.

»MORE: Cancer Treatments & Decisions

What did your hematologist say when you relayed your research findings?

I was doing my master’s in English at the time, and research is one of my strong skills. I’m used to reading academia. I was reading medical journals. 

I told the hematologist that from everything that I just read, FCR is no longer really recommended for IGHV unmutated status. Pretty much most of the other provinces in Canada now recognize this, and they approve this drug called ibrutinib as first-line treatment for people with IGHV unmutated status and other markers. I told him that I didn’t want to do chemo because I had read that and didn’t think it was the right thing. 

He told me 2 things. He said that he doesn’t have time to read studies and that I read too much. Then they set a date for the chemo to start, which was March 16th. 

That appointment with him was on February 25th, where he told me that stuff about not having time to read and me reading too much. Then he said, “Okay, we’ll set this date for chemo on March 16.” As that date was approaching, I felt like I was being sent to the electric chair. I knew that this is not what I should have.

How did you change his mind?

I wrote a 10- or 15-page letter to my Member of Legislative Assembly. An MLA is a politician because we have socialized health care here. I did all this research and referenced all these studies. I wrote to say, “This treatment is approved in other provinces for what I have. Why not here?” 

The next province over, you can get ibrutinib for my status. It was suggested to me by the hematologist that maybe I could move and that if I wanted to move, he would give me a referral. I’m like, “I’m supposed to move when I’m this sick?” 

Anyway, I wrote a letter to a politician, basically stating all of that, and I gave them all the research and the standard of care in other provinces and countries. Then I phoned the cancer agency back and told the nurse that I didn’t think that they were following a very trauma-informed approach and that I was being forced to do something that wasn’t right for me. I told them it was further increasing the trauma that I already had from not being believed. 

That nurse said, “Yeah, I think you have medical PTSD.” Anyway, she hung up the phone. She went to talk to the doctor. An hour later my phone rang. It was the doctor, and he said, “I’ll apply for special funding for ibrutinib for you.” 

Applying for Funding

He also said, “If you don’t get treatment, I’d give you a year, give or take.”

He told me that the only other case where he’d applied for ibrutinib funding for a patient was where that patient lived in a really remote area of the province, so they couldn’t access a treatment center for chemo. 

I said, “Look, I have this high-risk factor. I’ve already been through what I’ve been through. I know that that’s not the right treatment, and you’re going to tell me it’s my only option.” I just basically said, “Yeah, so now I’m having more trauma.” 

He just agreed to apply for the funding. He went through it with me when he did the application, and he said, “Okay, I should know within 72 hours.” Then 2 days later, he phoned me from his kitchen — I heard his dishes and kids in the background — and said that he was pleased to tell me that it was approved. 

I thanked him, and he said, “Thank you, because I didn’t know I could get it approved in cases like yours. Now I’m going to try to do this for other patients more in the future.” He works for this cancer agency of B.C. He’s under their umbrella. It’s kind of a political thing. 

They are overworked, but he didn’t know. He didn’t know that he could get funding for that drug for people who are IGHV unmutated, even though he works with a team of the other doctors in the province.

The doctor said he didn’t know. He thanked me, and he said, “I’m going to try to do this for more patients in the future.” I thought, “Okay, great.”

Starting ibrutinib

I went on ibrutinib at the end of March last year. Then that doctor went on sabbatical right away, and they put me under the care of a nurse practitioner. I was extremely unhappy with that because I’m like, “You just told me I would die if I don’t get treatment. I don’t know if this one’s going to work. I just started, and now I have to see a nurse practitioner, no offense to her.” 

I got yet a different doctor at a clinic to refer me to a specialist in Vancouver. He’s a teaching professional at the university there and runs a research lab. I saw him in August, and they had done a second CT then that confirmed that my lymph nodes had shrunk by half. In 5 months of ibrutinib, my lymph nodes were half the size they’d been previously. 

When I went to see him, he told me that if I had come to see them there, they would have not recommended chemo. They would have just told me that I should do ibrutinib. I’m like, “If you all work for the same agency, why is it different in a different town?” 

Anyway, he also told me that were I to get diagnosed at that time in August of last year, that the standard of care had now changed for everyone. No matter what cancer agency I go to in the province or someone goes to, if they get diagnosed with CLL or SLL and it’s IGHV unmutated, they will get offered ibrutinib, not chemo.

I’m still here now, and I might not be if I hadn’t advocated so much for myself.

VIDEO: SLL Treatment

Lessons Learned

The importance of advocating for yourself

I thought, “Thank God I was able to advocate for myself because otherwise…” What if I wasn’t a person who had the research skills that I have, or if I wasn’t able to communicate about it? I felt pretty lucky. I felt like I dodged a bullet.

I keep thinking now to being told in January or February last year that I’d have a year, give or take, if I didn’t get treatment. That aggressiveness also explains how I got so sick so fast and why I felt the way I did. I think of that, and I’m like, “I’m still here now, and I might not be if I hadn’t advocated so much for myself.” 

I think the medical system was also slowed down during COVID, when I was sick, so there was also that. It took 6 months from when I got really sick in July-ish to when I got diagnosed.

I just think that if I hadn’t done that, I might not be here — if I hadn’t advocated and if I had gotten chemotherapy. I just really had this strong feeling that was not going to be beneficial.

Ibrutinib and Acalabrutinib

What was your experience on the ibrutinib?

I was taking the standard dose: 3 pills a day, which is 480 or 420 milligrams. In the evening I took them. At first, my joints swelled up. My knuckles and my hands swelled up, and my feet. I got joint pain and just random bruising. I had gotten some rashes and some spots that went away. 

Some of my hair fell out, grew back in a halo, and then my fingernails basically started to kind of disintegrate. My nail beds started bleeding, and the tips of my fingers started cracking, as well as my feet. That drug affects the cancer cells, but it also affects other cells in your body. I was having a hard time with that. 

I started getting super bad menstrual bleeding on that drug. My iron was 13 or something. It got really low. My doctor said, “Oh, we’ve never seen that because most of the people that get diagnosed are older people and post-menopausal.”

Then I developed arrhythmias and tachycardia, which is a sudden, really high heart rate for no apparent reason. I had a few episodes of that that were super frightening, where my heart rate went up to like 170 beats per minute for no apparent reason and stayed there for half an hour. I got dizzy and nauseated.

 Switching SLL treatment

They started thinking that could be from the ibrutinib because it’s a very common side effect. That side effect, in combination with the joint pain and swelling I was having, made them say acalabrutinib.

 

Actually, when I was first diagnosed and started treatment, acalabrutinib wasn’t available where I am. It was actually approved for treatment in Canada — I found out later — on the same day that I had my surgical biopsy, but it didn’t become available in my province until the beginning of this year. 

I’d been getting a Holter and getting my heart checked, and they couldn’t catch it. Finally, my doctor just said, “Look, acalabrutinib’s approved now. Why don’t we just switch you?” I switched to that about 6 weeks ago.

What helped with the side effects?

My procedure when I’d have these side effects was to call the cancer center. They have a nurse line, and I’d tell the nurse what was happening. She’d pass that on to the doctor, and then they’d figure out what I needed to do. 

For the bleeding, I got prescribed a drug that reduces bleeding. When I’d have the knuckle pain or swelling and things, they would tell me to just watch it. 

That was my line of communication: to call the nurse line, and then they speak to the doctor, who then decides if they should call me back or not. I see the doctor every month still, so then when I see them at that time, I can tell them of any other things going on.

I went to patient forums. There’s a patient group on Facebook, and there was one on a forum called HealthUnlocked for people with CLL and SLL. I would talk to people there and say, “Hey, did this happen to you, and what did you do about it?” That’s where I went. 

I was talking to other people who’d actually been through it and saying, “Oh, my fingernail’s disintegrating. It’s not just me.” Somebody said to use keratin oil and different things like that. I actually got more help from other patients in terms of a lot of that.

I just had a lot of suggestions of, “Maybe you can get onto acalabrutinib if ibrutinib is not agreeing with you that much.”

»MORE: Cancer Treatment Side Effects

How did you get switched onto acalabrutinib?

I had it in my head, but I was actually scared to ask them everything. I’m like, “Maybe I should just not.” I got switched to a female doctor by choice in August, and she suggested it. 

When she suggested it, I was so much in shock that I didn’t even know what to say. Somebody actually just put that right out there. I said, “Okay, wait, let me go home and read about the side effects of that one, and I’ll come back and let you know.”

Within 2 days of being off the ibrutinib, just generally I felt like something lifted off of me. I felt so much better. My joint pain mostly went away. My hands are healing. I haven’t had the cardiac symptoms. Now I just generally have much more of a sense of well-being that I didn’t have before. 

I was really sick with an advanced form of SLL, and then I started the ibrutinib, which got the SLL under control. In the meantime, that ibrutinib was actually making me pretty ill, too. 

My understanding is acalabrutinib’s more targeted. It still affects the cancer cells, but it affects other cells in your body less.

Current health and side effects

I just feel generally better in addition to not having those other things. I feel like that’s a miracle. It’s the first time I’ve started to feel somewhat normal. 

I still get lymph pain in my neck and in my spleen. Nobody can really explain that because they say, “They’re shrunk, and they’re small.” They say maybe it’s just the illness still active in there. 

That’s the main thing that I still deal with, which is a physical challenge when it’s happening and also a bit of a mental health challenge. It’s constantly reminding you that it’s there. I have some fatigue yet, but I’ve improved a lot.

I take the acalabrutinib twice a day. Every 12 hours, once in the morning and once before bed. The side effects I had have really calmed down. It’s been a good improvement. I feel like I can start getting back to — I hate the term — a new normal life.

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Lynn B.



1st Symptoms: Prolonged fever and night sweats



Treatment: Rituxan infusion, ibrutinib daily

Nadia K., Small Lymphocytic Lymphoma (SLL)



1st Symptoms: Rash, lump under arm, fatigue



Treatment: Ibrutinib and acalabrutinib

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