2 years on immunotherapy - anyone discussed continuing/stopping with oncologist?

Yes, I have been through this, albeit with a different wrapping to what you describe.  My blog on it is here: https://community.macmillan.org.uk/cancer-blogs/b/kidney-not/posts/stopping-treatment---march-2024 

I was on the ModiFY trial from June 2023 - June 2024. I started to have thoughts about stopping in Feb 2024. I mentioned it to my onco and he was fully supportive and said it made complete sense.  My driver was that I should stop before I got the side effects from h3ll.  

Any questions, please ask. 

I should add that before the ModiFY trial, I was on ipi-nivo from Jan 2022.  I am also stage 4 RCC on diagnosis.  I was therefore on immunotherapy from Jan 2022 until June 2024. 

I am very fortunate with the response from immunotherapy.   

I was diagnosed with RCC in October 2024. It had already spread to lungs and brain, so was at stage 4, incurable but treatable. I had a craniotomy in November 2024 followed by six sessions of stereotactic radiosurgery. Since January 2025 I have have been having immunotherapy - 40mg of cabozantinib daily (reduced to alternate days) and Nivolumab every four weeks, now administered by subcutaneous injection. At present the cancer is stable, the lesion on the lung much smaller. I have MRI scans to the brain every three months along with CT scans to thorax and abdomen.  I see my oncologist or her representative every three months. The last time I saw her I asked when the treatment might stop. She said it could continue for as long as I wanted or until the toxicity got too much for me. I have a range of side effects, mostly manageable but I have had an adverse reaction to the immunotherapy which caused inflammatory arthritis. As a consequence I am now also under the care of the Rheumatology department and part of the REACT trial. I look for specific guidance and opinions. Does any of this ring any bells with anyone? Take care, everyone.

Thank you Mmum and Carlo, I will re-read your blog Mmum as our journeys have been similar. I'll post back on here following my next meeting with Oncologist. I must admit I am tempted to continue but go to 12 week intervals if possible. I have been so fortunate with my treatment so far just don't want to jinx anything.