We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

Kidney cancer

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

Interleukin 2 vs ipilimumab nivolumab options

Posted by

I have always opted for surgery for my mrcc. I now have the option between Interleukin 2 or ipilimumab and nivolumab. 

I feel that Interleukin is the best option but I am seeking other peoples experience with it please...

Also I note that ipilimumab nivolumab is only available to 'treatment naive' patients, so if I chose the Interleukin 2 option I would be excluded from this as a future treatment. This seems unethical.

Any advice would be most welcome.

Rich x

Posted by

Hi Rich,

my my partner had his first dose of ipilimumab and nivolumab just over 3 weeks ago for stage 4 rcc carcinoma with spread to lungs and brain. The good news is his constant cough has gone and the kidney tumour can no longer be seen sticking out of his body so it’s definitely fast acting for him. The bad news is that on the day of his next treatment we got called in to say his liver function tests showed abnormal results. Turns out the treatment is attacking his good cells in his liver so the oncologist is now in discussions with other specialists to decide the best course of action. He has been in hospital since last Thursday on an insane amount of steroids to basically reverse the drug and stop it working so it stops damaging his good cells. 

It’s crazy that it works so well on the cancer but now it’s destroying his liver!!!! However, I know this doesn’t happen to every person and at the moment his symptoms are reversible. He will probably not be able to have this treatment again but that one dose has already shrank the tumours so much without even looking at a scan and that’s only in 3 weeks. 

I am not familiar with interleukin at all but I will say that if you are lucky enough to not get side effects from the ipilimumab and nivolumab then go for it as the results can be astonishing. 

Good luck in your battle whichever treatment you choose.



Dream as if you will live forever. Live as if you will die today - James Dean
Posted by

Hi Rich65

I don't have an answer for you, but was interested in the question as I wasn't aware that Interleukin 2 was offered as first line anywhere. In doing a little research I came across this article https://pharmafield.co.uk/pharma_news/nivolumab-with-ipilimumab-for-use-within-cancer-drugs-fund/
which would lead me to ask why you would opt for Interleukin, over the combination? 

I'm probably being exceptionally naive but would something that's ground-breaking and new and leaves you somewhere to go next, not be a good option?

I'm on Pazopanib, so not yet familiar with other treatments, but would love to understand more about our options.

Lots of luck whatever you choose ultimately

Posted by

Hello Lou,

Thank you for your thoughts and information, I am sorry to hear that for your partner the ipilimumab and nivolumab has not worked for him. I will continue to find out more about my options, but your comments are very helpful.

I will post an update eventually but the decision won't be necessary for 12 weeks.


Rich x

Posted by

Hello Jo, Thanks for your reply to my post. I am drawn to Interleukin because after careful selection of patients there is a 20% complete response rate reported. As far as I know there are no known long term side effects and you do not continue long term on drugs. Obviously the fact that if it doesn't work for me I cannot then go onto the ipilimumab and nivolumab therapy is disappointing, and this is why I am seeking opinions from the online community. I am hoping to hear from people that have been on the interleukin treatment.

Thanks for your link which was also useful, I would rather have too much information than not enough!

All the best, Rich.

Rich x