Hello everyone, I’ve just come out of hospital having suffered the Collitis side effect of immunotherapy. Well mine was Enteritis (small intestine). I want to give encouragement to those worried about it as I was. It was painful at times I can’t lie but I’ve gone through it, they treated it with infliximab, the steroids didn’t work for me, and I’m recovering well. They took care of me and in the greater scheme of things I’ve come through the other side. I did question if was all worth it in my darkest moments but it is and the support is there, we aren’t alone. I reckon there must have been 30 or 40 people on my side that were in and out my room at least, doctors, nurses, nurse advocates, cleaners, a really post
Hi Balletstar
I'm sorry to read that your suffered collitis as a side effect of immunotherapy but glad to hear that you're now recovering well.
It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
Hi just wondering how you are doing now? My husband got immunotherapy induced colitis steroids didn't work for him so they gave one dose of infliximab and sent him home 2 weeks later colitis flared up again so he is back in hospital waiting for another dose of infliximab. He was on nivolumab and this has had to be completely stopped the oncologist said he wants to do watch and wait and scan 3 monthly and if anything progresses they will give him chemo and panitumumab just wondering if you have had a similar experience
Hi Hayleyc89,
I'm sorry to hear your husband is back in for the infliximab. I got colitis after my LAST pembrolizumab infusion, treated with steroids. Its been 3 months now and I still have 2 loose stools everyday. I take Imodium (Loperamide) for it and recently started probiotics. My oncologist considers my "mild" diarrhea the price to pay for being cancer free.
Cindy
Hi. My husband isn't cancer free unfortunately :( it is in para aortic lymph nodes the nivolumab has kept him stable for the past 8 months just praying it stays this way now he isn't currently on any treatment it's so scary.
Whatever cancer throws your way, we’re right there with you.
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