My Unexplained Follicular Lymphoma-Related Weight Loss

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020. Catch up on all of Karen's blogs here!

I have follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. I was diagnosed in July 2020 and was declared to have no evidence of disease (NED; remission) as of December 2020.

Every so often, the topic of remission comes up. Remission is, after all, the goal of cancer treatment, and the longer, the better. People who haven’t dealt with cancer often think that remission is an either/or kind of a thing: either you’re in remission, which means you were cured, or you’re not.

But many types of cancer, follicular lymphoma among them, are not curable. Even if patients reach remission, they often relapse and need a different, and often more debilitating, form of treatment. This leaves survivors in a state of constant, low-grade fear, which can be pretty stressful — especially when anything even vaguely resembling a previous symptom occurs.

I had several “B” symptoms before diagnosis. “B” symptoms are side effects of cancer and look different for different people. Mine were sinus tachycardia (high heart rate), fatigue which caused unexpected naps, sweats (usually called night sweats, because they tend to happen during sleep — mine tended to happen during naps), and sudden, unexpected weight loss.

The first three tend to occur any time I get sick; my resting heart rate rises, I get tired and if I have a fever, I sweat. I can usually dismiss concerns about those with a thermometer. If I have a fever, I can calm myself down by waiting a few hours to see if the fever breaks, or if it’s high enough or lingers a bit, I take Advil (my preferred fever medication).

That leaves weight loss, and that’s an issue. There’s a lot of press about weight loss in general, and recently, with the introduction of GLP-1 medications, there are even more articles about weight loss, and therefore more discussions about weight loss.

I lost some 15% of my body mass in two months prior to diagnosis, and until I was diagnosed, there was no apparent reason, except that I’d injured my back and wasn’t eating as much. Per my oncologist’s instructions, and due more to treatment than any change in habit on my part, I regained some of the weight. After all, I hadn’t done anything to lose it. Once treatment started, the cancer was less active and then indetectable, and I started to regain it. Regaining weight under those circumstances, it turns out, is easy — a little too easy — and now I want to lose at least some of it again.

Here’s the problem with that: sometimes I lose weight and don’t know why. I’m sure many people have experienced this. Some days no matter what you eat, you lose weight, and others, no matter what you eat, you gain weight. When I lose weight and can’t explain it, I tend to freak out, even several years later, and then I eat too much to see if I regain some, just to be sure. It’s getting better over time, but weight loss — a struggle I had before cancer — is becoming a real issue. I’m back where I was before diagnosis, and I was trying to lose weight then.

Now I have stress issues around weight loss too, approaching post-traumatic stress disorder (PTSD) level, which makes it a real struggle. My closest friends understand, but it’s still just enough of a stress-inducing topic that it’s hard to discuss with my primary care physician (PCP), who brought it up at my last physical. The PCP who diagnosed my cancer retired after I completed treatment, and it was just more than I could manage to explain all of that to the new one. It’s complicated because my oncologist and the PA both said that I’m good where I am. Or at least, the last time I asked, which was about 8 pounds lighter. Maybe next year, I’ll be up for that discussion. Even better, maybe I’ll have managed to lose some of the weight I regained. In the meantime, I’ll do the best I can to eat properly, continue exercising and try not to obsess over my weight.

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