I have experienced Yervoy activated colitis 2x. Stage 4 guy.
The first time followed standard combo treatment. We got there a bit late (like 4-5 days) in response after diareah onset (unclear if this really hurt), and I had 5 weeks of hospital over 4 months of recovery which was largely due finally to a 3rd and 4th round of infliximab which, I guess can only be given every 3 weeks. It was pretty hellish, lost 40 lbs in 40 days. Complete loss of vitality and muscle mass. Steroids in the 80s. Which maka me crazee.
Parenthetically, I also think the regional hospital I was first at did not have the oncology and conventional internal medicine background to address this. The treatment I got later in a University (Miami) hospital (connected with my oncologist too) was simply better focused on the interplay of the issues. So I count that as a “lesson”.
Yervoy apparently worked, and when I had a return my choice was chemo or reduced dose combo return, which I chose.
The dosage was reduced, we were ready for the colitis and avoided hospitalization with outpatient infliximab and 40 mg Pred., solving the colitis in 2-3 weeks.
I recently joked that I was ready for my next “shot of Yervoy, with an infliximab chaser” and got a laugh from my doctor, a first. That’s problematic of course, but this is somewhat a tale of hope of colitis getting better. I can tell you at it’s worst my feelings of “who would want to live like this very long anyway” were higher than they are now.
I found it not so hard to forget the 70 some days of every 2-4 hour bathroom trips on the clock. But I am still apologizing for my steroid rage outbursts of the time, LOL
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