Robyn’s Stage 2E Relapsed Diffuse Large B-Cell Lymphoma Story

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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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I’m really nervous I have cancer. Right [on the collar bone], it’s pretty much never benign.

I turned [to] my husband [as] we were watching TV with the kids and said, “I have this supraclavicular lymph node. It’s always abnormal. I’m really nervous I have cancer because it’s always abnormal.” He looks at me [and said], “It’s nothing. You just see too many people with cancer,” because that’s what I do for a living. I do a lot of oncologic imaging, mammography, and PET/CT.

It was one of those situations where I just [turned] my neck and I realized, “Oh my, I have a node.” In the axilla, sometimes the neck, they could be benign. But right [on the collar bone], it’s pretty much never benign.

The next day, I went to work, went to see a friend of mine who is a surgeon, and he’s like, “You have a lymph node so you need whole body CAT scans.”

The minute I looked at [them], I knew I had lymphoma. It was really stunning to actually see your own CAT scan and see that pathology.

Being a physician-patient

It was weird. I’m a radiologist. I read CT scans for a living.

I went to a surgeon who ordered these CAT scans and I had the CAT scans done. He started it from [the collar bone] all the way down to my pelvis because most likely it was an ovarian, stomach or lung cancer. I looked at the images and I didn’t see any cancer there but I saw all these lymph nodes in my neck.

I got back on the scanner and had them scanned a little bit higher up. Sure enough, I had lymph nodes all the way up and down my neck. They weren’t palpable but the minute I looked at [them], I knew I had lymphoma. It was really stunning to actually see your own CAT scan and see that pathology.

The waiting is the hardest part.

Because I was diagnosed with something called diffuse large B-cell lymphoma, which is a very aggressive lymphoma, I saw an oncologist that week. I had a port put in and the week after that, I started standard chemotherapy, which is called R-CHOP.

Waiting for more answers

Tom Petty said it the best. The waiting is the hardest part and that’s what I [say] to all patients who are going through this now. You’re sitting there, you’re new at this. I’m a radiologist. I’m not an oncologist. I know a lot but I did not at that point [know] that much about diffuse large B-cell lymphoma.

You’re waiting, your oncologist gives you statistics, and you don’t even hear them and try not to focus on [them]. How do you tell your kids? How do you think chemo is going to go? It’s very daunting, even though I’m in the business, so to speak. The thought of having chemotherapy and having all these procedures done.

One of the chemotherapy agents is called Adriamycin, which is called the Red Devil. Most people have heard about this one and dread that. You wonder, how am I going to do with this? Am I going to be able to function? Am I going to be sick? Of course, you do lose your hair, that was 100% told to me, but it’s scary. Then you’re going to do all these chemos and are they going to work or not? Are you going to survive? You don’t know. You just don’t.

Getting the full diagnosis

With the staging, I had to have all the CAT scans in a PET/CT [and] a bone marrow biopsy, which is unpleasant. I was a stage two, technically stage 2E because I had some lymph nodes behind my nose and something called Waldeyer’s ring — E being extranodal. It makes the diagnosis worse.

Then I had a subtype and that’s sort of controversial. The typing of lymphoma has changed. Back then, I was diagnosed as a germinal cell, but later, I was diagnosed as an ABC subtype. I think it was a mixed subtype. It doesn’t really matter that much. They all suck.

The oncologists do tell you what your percentages are, that’s really part of their job. You need to have some expectations. I’m an optimistic person, so I was, “Okay, fine, I’m healthy. I’m going to do great.”

There are certain types of lymphoma that are worse than others and it’s a process to go through. I remember my oncologist telling me, “If this chemo doesn’t work, we’re going to do something called salvage chemotherapy.” I remember looking at him and saying, “Nope, we’re not going to do salvage. I’m not going to need salvage, not doing it.” He just smiled and shrugged his shoulders, “Well, I just have to tell you that.”

You’re going to do all these chemos and are they going to work or not? Are you going to survive? You don’t know. You just don’t.

I had two going to college at that point and one was in middle school. They’re older but they’re still babies.

Telling your kids

I said, “Mom has a bad diagnosis. I have cancer but that doesn’t mean that it’s going to kill me. I’m going to take therapy, lose my hair, [and] potentially going to be very sick. Just hang in there with me and I think everything’s going to be okay.”

I think for the younger kids, it’s harder with the hair loss in the way your appearance changes and there’s nothing you can do about it. [With] the chemo I had or anybody who has intense chemo, you lose your hair, your eyebrows, and your eyelashes, but the kids were very supportive. I just think they were nervous.

I don’t know if there [are] any good ways to do it. There are some books out there for younger children like mom has cancer or dad has cancer. I think that might be a good way to do it with younger people, but being optimistic is what we did, what we’ve always done.

We did a family vacation. We didn’t let it stop us.

Anybody who’s going through therapy, I’m telling you, that was amazing, to have some food, especially for kids.

The other thing about it is they give you a lot of steroids. A lot of people get all puffy. You gain weight and then you’re nauseous [so] you’re not eating then you lose weight. It’s up, down, up, down. One week, you look puffy and moon face, the next week, you look skinny.

Overall, though, I did well but I had really good physicians. I had friends to help. I didn’t feel great, but I didn’t feel totally awful, so that was a good thing.

I followed everything I was supposed to do.

Integrative medicine

My advice to patients is that when you’re at a cancer center and if they have nutritionists or psychotherapy, that’s great. Sometimes centers have things like meditation and massage. There are all these things that cancer centers are doing as part of their integrative treatments and I highly recommend [them]. When I went through R-CHOP 11 years ago, this was pretty new. Now, at least where I work, it’s a standard of care at the center but patients have to take advantage of it.

No one should be embarrassed to ask. I was very happy to see an oncology therapist because to face a life-threatening disease is difficult for most everyone, I would think. It’s a nice service that a lot of these folks offer. I think it’s very important.

Sure enough, I relapsed.

I’ll always tell people who have a life-threatening condition, particularly like mine: it is totally reasonable to get more than one opinion.

Getting a second opinion

I actually got several consults from where I live because I live at a major tertiary care center and I called my medical school, which is another tertiary care center. Then I went to MD Anderson for a year. I got three different consults and even a fourth.

A consultant was sent to Nebraska, which is an area of lymphoma. I had been out four years and it was unusual for me to relapse. I wanted to know what else I could have.

At the time, I was just trying to stay alive. I was going to take my best odds. Now, in retrospect, I wish I hadn’t had the radiation, but at the time, I had talked to the specialist. At some point, you actually have to go ahead, have faith, and believe in who you’ve consulted.

I actually had consulted more than one doctor and one thing I’ll always tell people who have a life-threatening condition, particularly like mine: it is totally reasonable to get more than one opinion. That actually helped me because I had several institutions saying the same thing and that I think was helpful. If it’s just one institution, I don’t know if I would have been as comfortable.

Side effects of chemotherapy

R-ICE chemotherapy

R-ICE is very difficult chemotherapy for most people. It results in a lot of severe nausea [and] a lot of mouth ulcers. The majority of people end up needing blood transfusions afterward. I did not. I was unusual. You have to take the Neulasta [and] Neupogen shots.

I was also able to work some during that. But I’m really unusual.

When you have pain, you take pain medicine.

Intrathecal chemotherapy

The intrathecal chemo was uncomfortable, but it wasn’t any worse than R-ICE. The thing that was unusual for me was getting the huge catheter that they had to use for the transplant, which is a tri-lumen catheter that goes in your neck. It’s really, really big. I have a bigger scar from that than I do my port scars. I’ve had ports every single time. I’ve had two and then I had this huge catheter.

With this, the only way you could shower is to put plastic all over yourself so you don’t get this catheter wet. It required some medical knowledge or at least to be instructed with directions on how to take care [of] a patient who has these things.

If you have a family member that’s going through this, you’re going to have to have somebody that either has some medical knowledge to start with, is a nurse, or is willing to undergo training and is not squeamish. I can only do so much by myself.

Just like with the R-ICE, because it’s a hospitalized chemo and a lot of people have blood transfusions and they’re very, very sick afterward, they’re [unable] to eat. It’s just very difficult for the caregivers as well as the patients.

Fast forward to the stem cell transplant, most people feel pretty lousy — not initially, but once your white count’s low. In my case, I had a fever and everything. A lot of people have mouth ulcers. They can’t swallow very well. It’s very difficult for the family members to watch that.

The nurses and the staff might give the patient pain meds. I know I had some narcotics when I was in the hospital, so some stuff I don’t remember. I’m glad I had narcotics. I had no problem. When you have pain, you take pain medicine. I don’t remember some of the stuff. I know it was very difficult for my husband and my older son who were there at the hospital. Very traumatic for them.

BEAM chemotherapy

BEAM chemotherapy is just miserable. The worst thing is the Melphalan (the last part of it) causes, quite frankly, really bad diarrhea, like dysentery diarrhea. It’s just the way it is. Everyone survives it. It wasn’t pleasant.

The side effect of Melphalan is tough. A lot of my friends were in the Peace Corps in Africa and they said you haven’t really been to the Peace Corps unless you’ve had diarrhea where you couldn’t make it to the bathroom. I always said I feel like I’m in a Peace Corps. Honorary member.

Managing side effects

When I was there, they have a thing where you would walk the halls. I’m a big exercise proponent and when you walk, it actually helps the stem cells engraft. I really cannot reiterate. I did follow all my directions. The nurses say you need to walk and even if you feel like total garbage, I’d be there with my little IV pole walking around.

Before I had the BEAM, I was even on an exercise bike. But then once you’ve had the BEAM and you’re really, really sick, it’s very hard to do anything.

Going into septic shock

I got an infection so I ended up with septic shock. I was in the intensive care unit and I had a fever [and] septic shock. My blood pressure was zero. I was on something called pressors just to keep my blood pressure up.

I actually still have an aneurysm in my radial artery from having an [arterial] line. There’s nothing you really can do about it. You can just feel it. It’s not that it was done poorly. It just happens.

[Septic shock], it’s pretty common. People get sick. Sometimes they don’t get as sick as I did, but I wasn’t intubated. I had [a] high fever and a positive blood culture. What had happened is the line I had, even though they were using all aseptic techniques, had gotten infected.

They took the [central] line out, gave me all these antibiotics, and I got better pretty quickly. Then my cells engrafted, I started making my own red blood cells [and] my own white blood cells. I got out of the hospital in three weeks, which was pretty quickly. But I was sick. I was really sick.

I don’t remember some of it. My husband and people came to check on me. I was out of it. Evidently, I argued with the ICU doctor about which pressor to use, which I think is pretty funny. I was totally out of it and I’m arguing with the person who’s an expert. I’m a radiologist and I’m telling him which pressor I want. They must have thought I was really obnoxious.

They probably aren’t used to the bone marrow transplant patient arguing about the pressors, which, now I look back, is sort of funny. But the bottom line is they took great care of me and I’m here and I’m alive. Then I went home.

Head and neck radiation

At MD Anderson — even some people from Sloan Kettering because I had relapsed late but had pretty much all been in my neck and even in my nasopharynx — they want to do something called consolidate the bone marrow transplant. Because I was young and healthy, they treated me extremely aggressively. Not everyone would be treated like this, but they wanted to save my life and I agreed.

I literally survived on smoothies for about four months after [radiation].

Side effects of radiation

Head and neck radiation is very difficult. From my radiation, I was supposed to have very few side effects because it was only over [the neck area]. But unfortunately, I had a lot of side effects.

I had mouth ulcers. I couldn’t swallow solid food for almost five months after having had radiation.

It affected my salivary glands. I just couldn’t swallow. It was very difficult to eat anything.

I literally survived on smoothies for about four months after that and I was supposed to get 36 treatments. I ended up getting 30. They just titrated it down because I had so many symptoms.

The other thing is because of the scatter radiation, it got part of the base of my brain and I developed worse nausea than I’d had through any chemo. Vomited all the time. It was terrible. But again, I did what was recommended. I got the minimum dose for consolidation and I just thought I could take it. I tried to be positive and I made a real effort.

This is the other thing: to eat protein and try to keep my weight up the best I could. To give you an example, I started with a BMI of 22. By the end of radiation, I think I was down to 15, 14, about 103 pounds. That’s really skinny for me.

I think [the intense side effects were] an outlier situation. Medicine is difficult. The people doing my therapy were also my friends and they actually wanted me to get this treatment. I wonder sometimes in the nicest way whether they didn’t tell me about everything or maybe I didn’t hear. I only heard what I wanted to hear, which sometimes happens as a patient. But I know some of the things, especially nausea, was an unusual side effect.

I went back to work three months after my bone marrow transplant, just a week after radiation. I would go [get a smoothie] in the morning. I’d get one of these massive things with protein powder and I would just take it to work.

I don’t think it’s the most healthy thing and there’s going to be someone [going], “Oh, there’s too much sugar.” At this point, I needed calories. I would have some protein, and I could drink that all day long.

Managing the side effects of radiation

I did get an alternative therapy. I had acupuncture. [There have] been some studies [where] if you have acupuncture in your salivary gland, it helps promote the return of your salivary gland function. I think it helped. It didn’t hurt. It was uncomfortable but I was willing to do whatever I could to return to a normal life.

I also kept walking. I wasn’t able to do much physically at first, but I would walk around one block, then I would walk a mile. I’d walk two miles, three miles. I gradually worked up to that to try to maintain my muscle mass and my functionality. It was a determination for sure.

I had relapsed. Lymphoma was back nine months after therapy and I really didn’t have that many choices.

Differing treatment recommendations

My bone marrow transplant guy wanted me to have a bone marrow transplant and I don’t want to do that. CAR T is so new. This transplant physician, who’s actually very famous, said, “Look, you’re young, you’re healthy, you survived. You’ll do fine.” I said, “This was the worst experience. I don’t know if I’m going to survive. I don’t want to do this again.”

I had another friend who was very experienced say you shouldn’t do this. I have a friend who’s an oncologist, he’s about 15 years younger than I am, [who] said, “Hey, this is pretty good stuff. I think you’ll do well with this.”

Treatment

CAR T-cell therapy trial

Now there was something called CAR T-cell therapy and I had seen that online. I went on www.clinicaltrials.gov and we started researching trials for CAR T. I found one phase, one trial with something called the JULIET trial, phase one, where they had 25 patients and 12 had survived and got into remission. That was probably the best odds that I would ever have. I wouldn’t have [that] kind of odds with an allogeneic transplant.

We started looking for phase two trials for the JULIET trial, but also for the Kite trial, and for Juno. There were two other products and we started searching for those trials.

I had to do all the research myself and this is [what] I want to really stress. I had no advantage here, no connections. All we did was get online. My husband and I went on this clinicaltrials.gov site. We emailed every single center that was doing CAR T. We called them and we started looking. We’re trying to find a space.

I had a little blurb. I put my history in about three paragraphs because I knew I qualified for everything. I had no comorbidities. I just had lymphoma and nothing else wrong with me, so that’s perfect for a clinical trial. They don’t want to have any of the mitigating factors. They want to see just how the trial works, which is what they want for these trials. That’s why people are excluded from trials because they don’t want to muddy up all of the info when you have so many other conditions.

To make a long story short, a space opened up literally. We found out about the space on a Wednesday, I flew to the center — which was actually in Ohio, I live in North Carolina — on Monday. We signed paperwork to agree to do the trial. I was accepted.

Within the next week, I came over and they did something called apheresis where they filtered out my T cells, just like you’d filter out stem cells. They put a catheter in one arm then they put it through this machine. They filter out T cells and return the cells back to your body. Then they sent the T cells out to be modified.

The cool thing about CAR T-cell therapy is it’s your own immune system… This way, you actually modify someone’s own immune system to fight cancer, which is really brilliant.

Clinical trial paperwork

I did not read every single paper. We went over some of the guidelines. We went over the requirements and this is actually standard for T-cell. I had to be within 30 minutes of the institution. I had to go back for follow-ups. This was a series of things I had to do and I agreed with that.

I knew the results of the phase one clinical trial and this was the phase two trial. The investigator shared phase one. We went over side effects and a lot of that was just one on one.

This investigator, who is a very young investigator, she’s very pro-CAR T. I remember her looking at me and saying, “You are the perfect candidate for this. You’re healthy, your bone marrow is good. You just happen to have lymphoma.”

Costs of joining a clinical trial

Each trial is different. My trial covered the actual drugs and any medical treatment related to my therapy but did not cover the cost to get into the trial, which meant another bone marrow biopsy, some other CT scans, lodging, any kind of lost work, or the caregiver.

My husband, at that point, was not working so he was able to go up with me. We got a VRBO flat and we stayed there. It was very economical that way. People bring that up and some of the trials will pay for that, some of them won’t. Insurance companies will usually pay for lodging for a family member and the patient around a bone marrow transplant, but not for a clinical trial, in my experience.

A lot of this is based on some type of your own financing. With us, we had to finance the car, the VRBO, the caregiver, my food, and then my insurance company covered some of the initial testing, which would have had to be done anyway if I was going to have an allogeneic transplant.

It’s similar to some of the people’s reactions to COVID. We’ve actually seen people with COVID pneumonia that get these horrible infiltrates in their lungs. It’s more of a reaction to the virus and the cytokine reaction as opposed to the infection. It’s very similar. They were trying some of the same treatments for COVID that they use in cytokine release syndrome for CAR T.

With CAR T cytokine release syndrome, some people get it, some people don’t. [For] most people, it’s very mild and transitory. It’s not permanent. It just is an immediate reaction and then it goes away.

My T cells were infused in September of 2016. The infusion lasted 10 minutes. I had 600 million cells in this big bag. Everyone clapped when they were infused and then they waited. What’s going to happen?

Within 24 hours, I started getting a fever. I was told if I was going to [have a] fever [to] go back to the hospital. It got up to over 104 [degrees]. I had low blood pressure, shaking chills, [and] felt terrible for three days.

Because it was a trial, they didn’t give me anything for it. I only got Tylenol. They give you things for this now that I didn’t get, but it went away.

I would have six months to live, without therapy. Here I am, almost six years out. It’s amazing.

It’s interesting because CAR T’s a new therapy. Everyone’s very nervous about cytokine release syndrome [and] all these side effects, but they don’t really think about the side effects [of a] stem cell transplant, which are much worse.

Stem cell transplant, [an] allogeneic transplant, has a 10 to 20% mortality rate just from having the transplant. CAR T almost has a 0% mortality rate. A lot of people can get neurotoxicity with this where you’re confused for days. [The] majority of people get totally better. I really don’t know of any other ones that haven’t gotten better.

When you get to the point where you’re getting CAR T, you don’t really have a whole lot of other choices. Right now, CAR T is being used as a second-line therapy ahead of stem cell transplant, which I think is awesome. Some people are very nervous about that but they need to really research what the stem cell transplant side effects are as well as CAR T because it’s a new treatment. Everyone gets very nervous about that. I get it.

Bone marrow registry

Everyone should get on the bone marrow registry, that’s my big plug because there [are] a lot of us out there that are multiethnic, so we need a lot of people on the registry. I just didn’t really have a chance.

Mental health support

Any time you have a life-threatening situation, whether it’s cancer or any other disease, you need to use any ancillary help you can. I’m a big believer in integrative medicine as well as standard Western medicine.

[With] integrative medicine, there’s a role for psychotherapy. It’s really important [for] anybody who’s gone through a life-threatening event. People in the military who’ve almost died, a lot of them get PTSD. I think all cancer patients get a form of PTSD. It’s important for a lot of patients to talk to therapists. I’m all for that. I certainly did that after my bone marrow transplant. It was very traumatic for a while, but luckily, it was helpful.

I also recommend talking to nutritionists. I’m against any type of major extreme diet. They’re not necessarily helpful for you. It’s amazing when you talk to nutritionists [about] how you can improve the way you feel.

I’m also a big believer in exercise. A lot of that you can do on your own. Just walking and being outside is really important and it’s amazing what the health benefits of that are. I think it’s really true. Eat right and exercise. There is a lot of role for that. It’s simple but true.

I also just hold their hand and talk to them about losing their hair, having it grow back in, how weird that is, and can joke about some things. It’s nice. We have a special bond, some of the cancer patients and myself. I think it’s great for them and it certainly helps me. It’s a win-win situation.

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Diffuse Large B-Cell Lymphoma (DLBCL) Stories