First Treatment of partner - Nivolumab and ipilimumab side effects?

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My partner had their first treatment last week of Nivolumab and ipilimumab, and wondered how others found that it affected them?  Did it take long for the side effects to kick in and were there any 'lucky' people who did not get any at all after the first session?

They are finding it very hard to sleep at night so wondered is this a side effect of the drugs or just the entire situation we find ourselves in. 

any help greatly appreciated. 

  • Hi  

    I'm sorry to read that your partner is finding it very hard to sleep at night. I was fortunate that I have never had difficulty sleeping while undergoing treatment but everyone is different . You might find this information from Macmillan about trouble sleeping helpful to have a look through.

    I haven't had nivolumab and ipilimumab but I noticed that your post hadn't had any replies yet. replying to you will 'bump' it back to the top of the discussion list. I've had a look to see who's recently posted about being on these drugs and found  and  so have tagged them into my reply in the hope that they'll come and share their experiences with you.

    Wishing you all the best

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  • hi i am due to start on tuesday so will keep you updated. has your partner had many systems? 

    NIVOLUMAB + IPILIMUMAB
  • He had 2 sessions of the double dose, 3 weeks apart. He was supposed to have surgery at the end of those sessons but his cancer had spread while receiving the treatment so surgery now cancelled. Radiotherapy now on the horizon.

    Good luck on your immunotherapy journey! 

  • so sorry to hear that i have some idea of how your partner is feeling. i have been told that its in my lymph nodes left side of jaw and possibly liver and different parts of my bones. also have something on my left lung but their not sure if its part of the cancer. but have to have CT scans going forward. hope all goes well for you both

  • My partner was diagnosed with stage 4 metastatic melanoma in January 2025.he had 2 treatments of nivo/ipi and has been having monthly treatments of nivo ever since.he has only had the side effect of tiredness for the first few days after treatment.immunotherapy has been amazing for him and he has had constant shrinkage with each treatment.treatment will continue till January when he will have a pet scan to decide if they can stop treatment.hope it is as successful for your partner xx

  • hi i have had my 1st does and so far had diarrhea muscle aches very sleepy and feeling sick. next does 7th august 

  • Howdy! I was on these two for quite a while (have changed to another targeted treatment now) ...I was fortunate in that I had very few side effects. In fact, over time it made me feel better than I had in ages! I hope the same for your partner. I think the sleeping thing is more likely to be as a result of the stress of all this. The immuno is amazing stuff - try not to worry and I pray that you see decent results soon!

    Jo 

  • Hi all

    This is the 1st time ive replied to anything so apoligees if have made mistakes just wanted to agree with JoMac and offer some reassurance to people out there i have had a similar experience to JoMac same treztment and follow up very few symtoms and physically have  felt well amd continued to do a job i love and continue to do so Best of Luck  and Send good wishes to all