Opdivo and My Side Effects

I have been on Opdivo for over three years and have had wonderful results from it. Every three months when I have my scans, the tumors are always ever so slightly smaller. Compared to chemotherapy, this is heaven. Everything about me is better.

However, there are two side effects that have never left me during these three years. Fatigue and blistering rash.

The fatigue is exhausting

The fatigue is tolerable. On the day that I have my treatment, I feel the fatigue hit me that evening and then I sleep that night and virtually the entire next day. By day 2, I feel good again.

But this blistering rash...

The other side effect is a blistering rash. It has contained itself to my hands for the past three years, but as of yesterday it now is on my face. It is difficult to describe.

My palms appear to have calluses on them when in fact it is multiple blisters that have hardened. My fingers, in various areas, will start to itch horribly, and then within minutes, a blister appears. It reminds me of chickenpox.

I try my best not to scratch but inevitably during the night time hours while I am sleeping I always seem to scratch the blisters and pop them so by morning I have scabs. Per my oncologist's suggestion, I applied Aquaphor to my palms and then covered them up. It didn't help. I woke up with the bandage all crumpled up from my scratching in my sleep. I will say my palms did look better until the Aquaphor dried up, then they looked the same.

No luck with finding relief

I have always thought this was just me but recently someone posted a picture of their palms and while they looked like mine, mine is still much worse. Mine has cracked and bled and there are scabs on my palms and fingers. I have tried Benadryl and while that puts me to sleep so I don't feel the itching, I still wake up with popped blisters that I apparently grabbed at while sleeping. I have also tried lotions, vaseline, Benadryl spray (WOWZIE - stung like crazy because of open sores), and now the Aquaphor. None have given me success.

Running my hands under cold water helps

My fear is that I will eventually have to be put on steroids which are not advised while on Opdivo. It affects how Opdivo works according to my oncologist. She even advised me not to use creams containing steroids. So what to do? This morning I was washing dishes and the cold water that first came out seemed to immediately relieve the burning and itching of my hands. I patted them dry, very gently, and got relief for about 1/2 hour.

So now every half hour, I run my hands under cold water. I even grabbed a washcloth, wet it, and put it in the freezer to try that later. At this point, I am desperate for any type of relief that won't put me asleep for the entire day.

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.