Ipilimumab and nivolumab for stage 4, all over itchy/ burning rash driving me crazy

Hi Sorry for your ordeal. It is hard enough going through this treatment and it must be awful having such a bad rash. I managed to get through the four treatments as I did have a rash and itchiness to start with but as my body got used to the treatments it got less and less.Iwas given steroid cream and antihistamines. My rash was mainly on my legs and arms and wasn’t too bad. I did however get vitiligo on my arms .Regarding delaying treatment the choice is yours with your consultants. I remember also feeling overwhelmed at the time . I felt scared and found it difficult to sleep.

However I got through it and it is now so much easier just being on Nivolubab 

I now just feel tired after the treatment and slight joint ache.I have been on Nivolumab for over 2 years and have been told I will be on it indefinitely My tumours have shrunk or disappeared in places. I do wish you well and I know how it feels especially at the start of this treatment.

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Hi, I had an all over body rash on week2 after my first Pembrolizumab (it’s like Nivo), I wasn’t on the double treatment. I took antihistamines as soon as I had advice from my team and they delayed the second treatment by a week. I had antihistamines ready for the second one I was told to take them as a precaution for a week. I did this a few more times but as the rash did not appear again I stopped taking them.

I'm glad your rash went down Lgrgrdg90 and you were able to carry on treatment, hopefully mine is the same. So pleased it's working too and your tumours have shrunk, I'll hang on in there, just three more to go before I can just have the nivolumab! Thanks for replying xxx

Hi KT, thanks also for replying, it's reassuring to hear that your rash disappeared too. Hopefully it is just my body getting used to the drugs and then it will calm down. I'll keep going with the antihistamines! All the best xxx

Hi.

I too ended up with a red itchy burning rash on my face and at the base of my neck the first week after my first round of Ipilimumab and Nivolumab. I was given a strong  antihistamine and steroid cream which helped a lot! 
I received my second round of treatment 3 days ago and my face has flared up again! My doctors advised using the steroid cream twice a day now and also gave me Dermol 500 lotion which you use instead of soap or shower gel and it can also be used as a moisturiser and it has helped immensely! 
Hope you are able to find something that gives you a bit of relief and it isn’t too bad for you going forward.