Opdivo and My Side Effects (Part 2)

I have in the past year begun to have side effects from my immunotherapy, Opdivo. I had previously written about the "rash" on my hands. Well, that has taken a turn for the better but it didn't come without a lot of doctor appointments and experimenting with different medications. Since my diagnosis, fatigue has been the only side effect that I feel every day.

Until the rash.

This frustrating, persistent rash!

My hands, from my wrists to the tips of my fingers, develop blisters which then pop and form a type of callus. They are extremely itchy. Really itchy! We started with Benadryl but that didn't do anything except put me asleep. It really had no effect on my hands. We then tried taking Aquafor, caking it on my pals, and covering them with bandages. Again, still itching and no relief.

Finally, it reached its peak. My hand was totally covered in rough, cracked, bleeding skin. And the itching seemed to intensify if you can imagine that. We decided to try a topical steroid for seven days. Again, no relief or improvement.

Seeing an oncology dermatologist for help

I was beginning to get really depressed because for 6 weeks due to this rash I was unable to receive my Opdivo. Our last resort was a regimen of oral steroids. I was taking 60 mg a day for seven days. Days one through five seemed like nothing was happening again, but then on day 6, when I woke up, I could see clear pink skin on my palms. A first for me in over one year.

At the same time, my oncologist scheduled me with an oncology dermatologist. Unfortunately, he didn't get to see my hands at their worst but he has seen this type of rash before. He checked my feet for blisters as well. I had told him my feet were fine but he said typically it is both hands and feet - so I consider myself lucky. He decided to try another topical ointment that had a high content of steroids and I must say, it is getting better. Finally, after a six-week break, I can have my infusion of Opdivo.

Always tell your oncologist when something isn't right

The oncology dermatologist did tell me that rashes from immunotherapy seem to disguise themselves as a rash that you would think come from something else. For me, who would ever expect that a handful of blisters would be called a rash. For months, I thought I was allergic to something and never associated it with my immunotherapy. The lesson here is if there is anything out of the ordinary - and I mean anything - please show and speak to your oncologist. They would be the ones that would know the difference.

Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed.