Immunotherapy following a radical nephrectomy

Hi Vazquez 

I shared my experience of pembrolizumab on your post in one of the other forums and I hope that was helpful. If you add a bit more detail about your situation and treatment plan, other people with kidney cancer may respond. I understand various immunotherapy drugs are used with kidney cancer. Nivolumab is used and is in the same drug class as pembro (they are both PD-1) inhibitors. Hopefully someone else with experience of one or other will respond. 

I had my radical  nephrectomy over three yrs ago ago and started immunotherapy in June 23. Initially I had a severe rheumatoid reaction ( diagnosed after three weeks) in my neck and drugs were stopped for a while. After three months off my drugs  scan showed huge intraabdominal secodaries SO stage 4 now, and I started and Pembrolizamub  and Levatanib.

i haven’t looked back- the drugs  shrunk my tumours almost immediately and I had three monthly PET scans which have stopped now, along with Pembroke which one only takes for two yrs anyhow. I’ve been in remission for ages.

there are symptoms with the drugs of course but I got off lightly. Unfortunately I was struggling with arthritic hips and had one replaced 11 months ago and my next one is being done in just over a week. No problems, and I’m much older than you- 76 now!

it wouldn’t be fair to say these drugs have few symptomatic occupancies when taking them, with me arthritis in knee was main one, I already had bad hips for yrs. sometimes one goes off food , things one liked. I had  a period where I couldn’t eat any chill at all- it burnt my mouth. I do sometimes get very tired and did have red cheeks quite often on Pembro. 
immunotherapy has given me three years and maybe many more!

Thanks, mate.

Hi Vazquez, I’m on Pembrolizumab every 3 weeks following surgery for a kidney tumour and adrenal metastasis. No serious side effects after dose 1, but after dose 2 I have developed a sore, itchy rash on my neck/chest. But there’s  good evidence that Pembro does reduce the risk of the cancer coming back, so I’m going to persevere as long as it doesn’t get too bad. Otherwise I feel more or less ok, just a bit low on energy. Could be worse! 

The doctors say that Pembro is generally well tolerated and although I hesitated to start it, I’m glad I did. 
Hope your own treatment goes well. 
Evie