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Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Starting Treatment Tomorrow (nivolumab and ipilimumab)

Posted by

I have just had a call from the hospital wanting me to start treatment tomorrow. I have an appointment with the Oncologist in the morning and then treatment in the afternoon. I think I am more scared than when I went in for my nephrectomy.

What can I expect, what are the side effects like, how soon might I experience them? I would be grateful for any advice.

Posted by

Hi Cate

I'm sure someone will be along soon - but just wanted to make sure that you'd seen this recent thread https://community.macmillan.org.uk/cancer_types/kidney-cancer/f/kidney-cancer-forum/185517/combined-immunotherapy-ipilimumab-and-nivolumab

Good luck with your treatment

Posted by


I had my first cycle of immunotherapy of ipilimumab and nivolumab recently.  Unfortunately the result was a week in hospital to sort out the hepatitis it caused.  i was very frustrated as i felt it had put back opportunities for treatment, although i was grateful not to suffer any other side effects.  The good news is that a recent ct scan indicates there has been no new growth and it would appear that the secondaries have reduced in size.

i am told that i am unable to have further immunotherapy but i am optimistic that the first cycle is still in me and working while my liver function improves and we can consider other treatment options.

The actual treatment is a piece of cake and from my experience apart from fatigue which i have had since i was diagnosed, a little diarrhoea (managed with Loperamide prescribed at time of therapy) no other problems till the Hepatitis.

Sorry i didn't reply before your therapy but hopefully you will have a positive outcome from what i believe is cutting edge treatment.