Ipilimumab and Nivolumab side effects

Hello Cambers79, I haven’t got the exact experience your looking for as I’m only on the single immunotherapy Pembrolizumab (which is like Nivo) but as you hadn’t had a reply yet I thought I’d chip in. My first side effect kicked in at week 2 after I started, an all over body rash, it delayed my next treatment by a week to get over the rash with antihistamine tablets. I had the 24 hour oncology number and they were very reassuring telling me what to get and rang me back the next day to check I was ok. That was 5 years ago last April. I said 1st side effect nothing major has happened for me, my hair went curly for 2 months, 2 months in and I usually feel tired for a few days afterwards, just feeling at half speed, I’m having #55 this morning.

Hi I had both drugs and managed to have the four treatments before going on to Nivolumab. I am still on Nivolumab every four weeks. Regarding side effects,having both treatments was a lot harder for me than just one. I had joint ache and a slight itchy rash. I was given antihistamines which helped. I also was tired after the treatment .

i developed vitiligo on my arms. It didn’t go away and is more noticeable in Summer when I wear  short sleeves. 

I felt I was lucky as my symptoms were mild compared to what I have read others have had. It seems that some people have to have a break in treatment and have steroids to help their body cope with the side effects..Also I read even if the four doses aren’t completed the treatment can work 

I am pleased I wen5 ahead with the treatment as it shrunk my tumours considerably and I had a large tumour burden.

 I have been told I will be on Nivolumab indefinitely which gives me reassurance as it does seem to keep me healthy as now apart from slight itchiness and feeling tired after the infusion I am well  I wish you well with the treatment .

Hi, 

I had two rounds of ipilumumab & nivomulab in January and February of this year. Unfortunately I suffered with a stage 4 toxicity & had to stop treatment . I felt amazingly well for the first week following the first treatment, then began with an itchy rash. I took antihistamines which helped a little but at times I felt like my skin was crawling. I then started to get diarrhoea which was controlled with Imodium. I had my second treatment & the itching & diarrhoea got worse. So much so that Imodium did nothing so I was advised to eat just plain white carbohydrates.  My appetite went and I could hardly eat. I was given oral steroids which helped for a few days then it started to get worse again. I lost a stone and a half within the space of two weeks. My oncologist arranged for me to have a sigmoidoscopy which confirmed immunotherapy induced colitis & I then had an infusion of steroids over 3 days before going back onto oral steroids. This eventually settled everything down & I was weaned off the steroids. A scan showed that two of my tumours had reduced in size & one had increased but hoping that it is pseudoprogression due to the immunotherapy . I still get the itchy skin from time to time but thankfully the colitis has cleared up. I am due to have another scan at the end of July to check what is happening but hoping the immunotherapy I have had is still working. My oncologist won’t give me any more ipilumumab or nivomulab so not sure what the next step will be. I really hope that you manage to have your treatment without suffering from any side effects. Good luck! 

Thanks for the replies!
I have started getting a slight itchy rash on my face and neck but nothing major and I have felt more tired in the last 24hrs. I will call on Monday for antihistamines and hopefully won’t get worse or develop any others. 

Yes the antihistamines should help. I was prescribed some steroid cream too when it got worse which I forgot to mention. Hopefully it won’t be too bad for you and your treatment will go well