Nivolumab

Hi Rowdy, side effect that happen most often with Nivo can vary but for most fatigue, rash, sore joints are pretty common. All check point inhibitors run the risk of diarrhea and other inflammation type reactions to organs. I have had it pretty easy on treatment with no side effects that have interfered with treatments, today I am posting from the Ottawa General awaiting treatment # 109. Here is a link to a more complete list of side effects which are referred to as IRAE's and the way oncologist treat the side effect. Best Wishes!!!Ed https://www.uptodate.com/contents/toxicities-associated-with-checkpoint-inhibitor-immunotherapy

I received nivo on a trial at Johns Hopkins in combo with an experimental drug for about 6 months. I had previously received pembro for almost 1.5 years. My experience with both was similar — side effects were very mild, just some itching and fatigue were the only things that troubled me. And neither of those things were very troubling at all.

-Bill

Hi Rowdy;

I just finished my 5th treatment last Monday. I had experienced body aches, a few mouth sores and fatigue. Last monday I tried the once a month (twice the dose) protocol and everything I had previously was much worse. I am going to try one more once a month dose 5/21 and see if that was just a one off and if necessary go back to every two weeks. I have not had anything severe to this point. Hope this helps. Good luck with your treatment! Blessings,

Ted

My husband has had just three doses and has had no side effects. (We don't know if he's getting nivo every four weeks or nivo every two weeks with a 1/3 dose ipi every sixth week .) Apparently the most common side effects at his treatment center have been itchy rash, gut stuff or fatigue, but these have been mild so far for those who have had them.

The oncologist recommended a good probiotic daily, so my husband is taking that and drinking kefir plus eating a couple other foods to increase good gut bacteria. While we have no way of knowing if it's helping or not, he was on an antibiotic (unrelated to immunotherapy) and did not experience stomach problems – highly unusual for him. 

Hi Rowdy, I'm due for #30 next Friday, minimal side effects for me, minor fatigue the next day, also vitiligo on my hands and arms, plus white facial hair, beard, eyebrows, eyelashes. No issues with skin rash, in fact my eczema has improved in the last 18 months, everybody's different.

I put this together a while ago…but it is still true:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html  

There can be worse and more difficult side effects, but that post covers those that are most common.

Ed is right about vitiligo!  Here is a collection of posts on that topic:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/all-things-vitiligo.html  

For what it's worth.  I wish you all my best.  Celeste