Kidney cancer and Immunotherapy

I wonder whether my experience might be of some help or support. I am just turned 75 and was diagnosed with renal cell carcinoma in October 2024 with METS to lungs and brain. Like you, treatable but incurable. I had a craniotomy followed by six sessions of stereotactic radiosurgery before starting on immunotherapy in January 2025. Nivolumab every four weeks and 1 cabozantinib tablet every day. My last two scans have been very positive, Brain remains stable and there have been measurable reductions in tumor size in both lung and kidney. I hope my next scans at the end of October will continue this downward trend. There are side effects, for me mainly diarrhoea, dry skin and itching and some issues with sore fingers. Other side effects from the long list have bothered me very little. So, my experience with this immunotherapy has been a good one on the whole and I hope they will decide to continue it in 2026. I hope this is of some use. Take care and try not to worry - easily said, I know. 

I have cancer on my remaining kidney with mets on my lungs and Adrenal glands and am incurable.

  I had Nivolumab and Cabozantinib together but on the second infusion I had  anaphylaxis shock so I was treated for that and it stopped. The Cabozantinib was stopped after 2 weeks as my blood pressure went really high and I had debilitating headaches.

I am now about To start pazopanib  once I'm over my tooth extraction, its all thats left to me apparently.  The list of side effects are the same as the Cabozantinib plus some extras so I'm not too keen as I feel so well off the treatment and am thinking quality over quantity may be the way forward.

I wish you all the best and hope it helps you.

Hello Carlo,  thank you for making contact with me.  in yet another turn of events I have had my Cabozantinib stopped as it reacts negatively with another drug that I am taking.  I only managed 2 tablets of it so far and I have to go for an ECG tomorrow to check if it could be taken.  It does sound as if I could tolerate it if I am viable though as I too have had the side effects you described with my other drugs.  Whilst these are not pleasant I found a way of coping with them as you have done.  If I can find a path of least resistance to any treatment type I will give it a go as I'm sure is a sentiment shared by many of us. Fingers crossed, I will hope I get the opportunity to give Cabozantinib a go and receive some positive news as you have done.  I will update my status as and when I know more.  I wish you more strength to continue on your treatment path and a continuation in positive results going forward.

Hello Kyiro (what an unusual name) how do you pronounce it? Thank you so much for responding to me.  I too have one kidney having had the left one removed in 2020 just as the lock down for Covid began.  My lung mets were discovered three years later and, so far and luckily, no further evidence has been found.  I'd only taken 2 Cabozantinib tablets when I got a call from my oncologist telling me to stop them as they react negatively with another drug that I am taking.  I'm off for an ECG tomorrow to see if it is possible to continue treatment if the other drug can be stopped.  I have to admit to feeling a little worried that I have not been on any treatment since the end of August as there was initially a mix up in getting   the prescription filled at the hospital.  If I were a true believer in fate I would probably think that Cabozantinib was not for me as this is the second delay I have been given in starting this treatment.  I will await further decisions this week to see what will be.

How are you doing?  How long have you been coping for?  Please don't feel the need to answer me unless you want to.  I have to say the thing that worried me most about your response was "tooth extraction" I have an absolute fear of dentists, so much so that I haven't seen one for a good few years even though I'm sure I need to. I know how ridiculous that sounds considering my health situation but I cannot seem to get over it.

I strongly identify with your last sentence, thinking quality of quantity, this was in my initial discussion with my oncologist.  Having had a break from treatment like you it has been really nice to begin to feel human again. I shall post an update when I know more myself.

I wish you well and the best of luck with your new treatment.