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. Six months, four doctors and two biopsies later, she was diagnosed with small lymphocytic lymphoma.
Thank you for sharing your story, Nadia!
- Name: Nadia K.
- Non-Hodgkin’s lymphoma
- Subtype: Small lymphocytic lymphoma
- Unmutated IGHV
- 1st Symptoms:
- Lump under arm
- 1st SLL Symptoms and Medical Gaslighting
- Introduction and 1st SLL Symptoms
- A Series of Doctors
- SLL Symptom Progression
- Needle and Surgical Biopsy for SLL
- Needle Biopsy
- Being Taken Seriously as a Patient
- Surgical Biopsy
- SLL Diagnosis
- The SLL Diagnosis
- Choosing Treatment
- SLL Treatment
- Non-Hodgkin Lymphoma Stories
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?
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 and 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 two-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.
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, 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 to 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.”
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?”
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 two 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?
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’m sitting in the room. He walks in, and he’s this huge man. He said, “Hi, Miss Kozak, do you know why you’re here?”
I said, “I have multiple swollen lymph nodes. So far I’ve had two 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, extremely dismissive.
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’m 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.
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 two 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 three 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.
Needle and Surgical Biopsy for SLL
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 two 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 two 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.”
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 two doctors — I don’t know what they’re called, but that 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
I did have a counselor luckily 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 that 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.”
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.
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.”
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 two weeks for the holidays. They said they were coming back on January 4th and 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.
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 kind of 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, 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.
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.
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. Basically, telling him without directly saying, “I know you didn’t believe me, and I hope you didn’t mess up or whatever.”
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.
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 in retrospect would have.
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 two 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 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’s 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 four months before to see what change there may have been in the lymph nodes, and that they needed to do all of this before I start treatment.
What were the results of your bone marrow biopsy and genetic tests?
They told me that I had 40 percent 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 four 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
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 slow,” which they call “histologically aggressive.”
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 two 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, that 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.
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, that 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.
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 that I didn’t think it was the right thing.
He told me two 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 and then, “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 ten 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.” Two 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.”
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. 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 five months of ibrutinib, my lymph nodes were half the size they’d been previously.
When I went to see him, he told me that had I 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.
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 six 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 that was not going to be beneficial.
Ibrutinib and Acalabrutinib
What was your experience on the ibrutinib?
I was taking the standard dose, three 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, 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 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 six 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 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.”
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, that 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 two 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 is 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 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, but a new normal life.
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