Every cancer journey is unique, and that’s certainly the case for Josh Feldman, who has navigated through numerous aspects of non-Hodgkin’s lymphoma (NHL), a cancer that affects the body’s white blood cells.
The 56-year-old Feldman talks about how he was first diagnosed, what kind of ups and downs treatment brought, and what he believes the future will bring.
HealthCentral (HC): When did you first begin to suspect that something was wrong? What were the symptoms that led you to the doctor?
Feldman: It started on my honeymoon, in 2010, when I noticed a little lump on the back of my neck about the size of a garbanzo bean. My wife had actually seen it on our wedding day first. Of course, we both thought it was some weird little cyst or inflammation I’d gotten while surfing. But a month later, it wasn’t gone, so I went to a doctor, and he told me it was nothing and not to worry about it.
That didn’t sit well with me, so I went to another doctor, who also said it wasn’t a concern. The third doctor, thankfully, did a biopsy, and that’s when I found out it was a form of non-Hodgkin’s lymphoma called follicular lymphoma. I had several tumors deep in my abdomen, in different lymph nodes there.
HC: What kind of treatment did you get initially, and how did that affect you?
Feldman: The only way to treat it was with chemo, so that’s what I did. For months, I received chemo and continued to work, and I tried to maintain a positive attitude. But it really did wipe me out, it was difficult to function. Still, after treatment, I went into remission and felt like it had all been worth it.
Then, a year later, it came back. I have a slow-growing kind of lymphoma, and was told that it’s the kind that never really goes away. If you’re lucky, you just delay its return. Because I knew that there was a high chance of recurrence, I wanted to try something different instead of having chemo again.
I enrolled in a clinical trial, and the first one I did negatively impacted tear production in my eyes, so I had to stop that treatment. But in 2016, I did a second one called CAR T cell therapy, and that ended up having great results. I felt fantastic after only a month of that treatment, and it’s been two years now and I’m still going strong and cancer-free.
HC: What led you to consider doing a clinical trial? And how did you find out what options might be a fit for you?
Feldman: I just felt that there had to be a better option than chemo, or something that showed more promise, and I wanted to be part of that. At one point, it was suggested that I get a stem cell transplant and I was being prepped for that. But in researching that option, I learned that chances of rejection would be at least 40 percent, and I’d have to be in the stem cell transplant ward for months. I wanted a different choice.
I found my clinical trial through the Clinical Trial Support Center of the Leukemia & Lymphoma Society, which provides support through the entire process of a clinical trial. It was very helpful to have that kind of resource out there.
HC: With so many ups and downs happening with treatment and scans, how did you deal with the emotional challenges?
Feldman: For me, it always helped to stay focused on what was ahead. If something wasn’t working, I’d ask what would, and what it was going to take to get me to the next step.
The other thing I found helpful was focusing on other aspects of my heath. In looking at some of my scans, I saw that I had mild arteriosclerosis, meaning the beginning of heart disease. Obviously, the cancer was a much bigger concern, so that didn’t get discussed. But both of my parents passed away from heart-related issues in their 50s, so my wife and I took action. We switched to a plant-based diet, which made a huge difference in a subsequent scan. In many ways, I think cancer saved my life. If I hadn’t had lymphoma, I think I would have been on track for a heart attack. Thinking in that way—that the cancer had a benefit—helps me to stay positive.
HC: What advice would you give to other people who might be facing a cancer diagnosis?
Feldman: Remember, my whole story started with two doctors telling me not to worry, and to just go home and ignore that little lump. So, my advice would be to listen to your gut, and not to accept what just one doctor or one researcher says. There were times during my treatment when a doctor would dismiss my side effects, even though I felt so terrible I wanted to crawl home to bed.
I’d say do your research, ask questions, take notes, and absolutely be your own health advocate. Taking charge of your health, even in the face of a scary diagnosis, is one of the best things you can do for yourself.