Loretta J. Nastoupil, MD: Let’s discuss your actual treatment. We went through the journey of you having symptoms that led to additional tests. You finally had a biopsy that confirmed diffuse large B-cell lymphoma. We spent a lot of time talking about the treatment. When I first meet people, my first perception is, there is a lot of concern about toxicity surrounding treatment. Particularly with a disease that is going to be widespread, throughout the body, we’re limited by the fact that we frequently use chemotherapy because we need something that’s going to go through the whole body.
Even though we like to think we’re rapidly advancing the field and are introducing new therapies all the time, we still use chemotherapy, which was developed in the 1970s. Sometimes it’s hard to describe to patients why we would use chemotherapy for this disease. What are the expectations of that in terms of toxicity? Most patients know of someone who’s gone through chemotherapy and had situations or side effects that were really unpleasant. Obviously, they would like to avoid that.
I generally tell patients that there are so many different types of lymphoma. There is not one size that fits all. We do approach certain lymphomas consistently. What I mean by that is, particularly for diffuse large B-cell lymphoma, CHOP [cyclophosphamide, doxorubicin, vincristine, and prednisone] chemotherapy has been the standard since the 1970s because there have been numerous things that have been tested against it and they were not any better.
What has improved and continues to be good for patients, in my opinion, is the introduction of immunotherapy. Now we have chemotherapy plus immunotherapy, which we’ll get your perception of. What was your impression when we started talking about chemotherapy as your treatment recommendation?
Whitney Neighbors: Like you mentioned, you have these preconceived ideas of what that’s going to do your body. It was very frightening to think about it, but it was sort of a necessary evil, and so you just sort of try to make peace with it. I was afraid of it, and I wanted to research ways that I could help myself deal with what I knew about it or had read about it regarding the side effects. That kind of became a research project for me. You hear the word “cancer” and you think, “I’m going to have chemotherapy” or “I’m going to have to some sort of an invasive treatment.” Maybe I was reconciled to that. I was still so relieved that this is what I had versus what I had originally been told. I felt like there was a path forward for me. Is that answering your question?
Loretta J. Nastoupil, MD: Since I’ve been a part of your journey, I can illustrate that you are the type of patient who will identify a challenge and take on the role of educating yourself, informing yourself. You’re actually participating in the discussion. I’ve had various types of experiences with patients. There are some cases in which either the patient or the family would rather not be burdened by the information, particularly anything that’s going to be perceived as negative — whether it’s about the negative side effects or a negative outcomes. They would rather just be told, “This is the treatment. This is how we administer it. These are the days that you need to show up. This is how it is going to play out for the next 6 months.” That’s absolutely fine. For some patients, that works really well — less information, more logistical. “Where do I need to be, and how long is this going to take?” That may work.
My perception of you is that you were the exact opposite of that. You wanted to know exactly what this was going to do to your body. You also wanted to know what you could do, as you mentioned, to make everything more tolerable or more acceptable. You go out and explore beyond what information or tools I have in my toolkit and then bring that back to our discussions. I think it’s important, when you’re a part of a treatment team, as a patient, that you have trust and you have a relationship with your team. That team extends beyond the physician. It extends to the nurses and the nurse practitioners and physician assistants and the nurses in the infusion centers who are administering the treatment. If you can’t have an open dialogue about what’s happening to you, we probably can’t help you as well as we could.
Again, I will highlight that you’re very good at expressing what you’re experiencing — not only the symptoms but also the duration and the severity, because it is a spectrum. I generally know what the side effects of the chemotherapy are because I do it a lot. Each patient’s experience is a bit different in terms of the intensity and whether or not you have all of the symptoms or just some of them. So, I would advocate for someone like you to be very vocal and open with your oncologist. We can react and help you. We tinkered around with things along the way. We’ve made some dose adjustments to try to minimize some of the toxicities. We do scans midway through treatment to gauge how well the treatment is going. Do we need to dose modify for toxicity? Do we need to add in additional nausea medicine to get you through it? Although I don’t minimize the complexities and the difficulties of tolerating chemotherapy, I would say that you’ve done very well at approaching this and being a part of the treatment discussions and decisions.
Whitney Neighbors: I agree with that. Once you sort of know that you have to do something, you sort of check that box off. You decide how you are going to get through it. That’s one of the things that I did. I sought out different resources for myself. I wanted to see what I could do outside of medicine to help my body heal from the side effects. I looked at changing my diet and researched nutrition and mental well-being. I talked to you about meditation and things like that — things that don’t necessarily come through my IV but ones that I can put in my body and in my mind to help me heal. You have to do the chemotherapy. You have to attack the disease. Chemotherapy has side effects, and you have to manage them. I just wanted to put myself in the best position to be a survivor and to tolerate these side effects and recover. When we were finished with the treatment course, I wanted to try to get as back to normal with my life as I could. I wanted to put my body in the best position that I could, separate and apart from treatment.
Transcript Edited for Clarity