Immunotherapy for stage 4 kidney cancer

Haha! Here I am again after replying to your post in the kidney group - you just can't get rid of me 

For the benefit of everyone else not in the kidney group and interested in this topic . . . .  I'm on ipi/nivo since Jan 2022.  I had lung mets, but no trace of them in my Dec 2022 CT scan which reported stable.   No "standard" side effects for me (fatigue, itching, sickness, diarrhoa) BUT I got a immune related adverse event (a rare side effect, not even listed in the drug info) which caused the treatment to be postponed for 3 months and a course of steroids to mitigate the effects.  Back on track now at the expense of an impaired kidney function - oh the irony!

Hi Mmum

Do you mind me asking what the effects were?

I've had a few postponed treatments so far, when I've also had to go on steroids to dapemn things down  

In my case it has attacked my liver and my thyroid.   

Yeah, no problem.  It was inflammation in the kidney tubules.  Acute interstitial nephritis to give it its proper name.   The fatigue and weight loss kicked in and my kidney function went down to 33 (normal is >60).  6 weeks of prednisole including the taper.  Too long!  Then when I started back on the nivo, the eGFR declined again.  I was given a threshold GFR "go/no go" value for the next treatment.  I made it - just \o/ .   Seems to have stabilised now.  

Hope it stays stabilised for you x

I'm still on 50mgs of pred plus the 3 days of treatment with  dexamethasone, which explains why I'm on here at two in the morning instead of sleeping.

I go down to 40 next week, but it's still too high. My face is starting to resemble a puffed up hamster, despite drastically cutting down on calories and salt.

Meant to say, it was the immunotherapy that caused all my problems.