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

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

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MCL Diagnosis and Watch & Wait

Introduction

Tell us about yourself

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

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

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

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

Realizing it might be cancer

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

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

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

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

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

CT Scans

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

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

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

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

Bone marrow biopsy

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

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

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

The Diagnosis

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

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

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

I was still in denial. Maybe I was still thinking, ‘It’s probably nothing there. They’re just being careful.’

Translocation

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

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

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

»MORE: Genetic Testing for Cancer

Receiving the diagnosis

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

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

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

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

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

»MORE: Reacting to a Cancer Diagnosis

How did you break the news to your loved ones?

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

Watch and Wait

Being on watch and wait instead of treatment

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

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

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

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

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

Finding an MCL specialist

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

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

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

Choosing to stay with MD Anderson

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

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

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

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

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

Helpful tips for dealing with the wait

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

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

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

Healthy distractions

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

»MORE: Eating Healthy During Cancer Treatment

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MCL Treatment and Clinical Trial

Treatment Options

How did you know it was time to start treatment?

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

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

How did you react to the idea of starting treatment?

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

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

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

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

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

»MORE: Clinical Trials in Cancer

Hyper-CVAD chemotherapy

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

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

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

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

»MORE: Chemotherapy

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

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

Resources

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

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

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

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

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

Clinical Trial

Choosing the clinical trial

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

Working during treatment

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

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

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

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

»MORE: Working During Cancer Treatment

Remission

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

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

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

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

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

Chemotherapy

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

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

Clearing the drug from your kidneys

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

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

Treating side effects

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

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

»MORE: Cancer Treatment Side Effects

Hair loss

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

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

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

»MORE: Hair Loss and Regrowth

Henna crown

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

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

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

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

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

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

What does it feel like looking back?

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

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

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

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

Dealing with scanxiety

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

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

»MORE: Coping With Scanxiety

Advocacy

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

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