I’ve just had appointment with oncologist. Pazopanib now not working and I’m to start on Nivolumab next week. Like to hear from anyone who has changed treatment to Nivolumab and how are they getting on with it.
Hi - I've not changed to nivo, as I started on ipi/nivo in Jan 2022, and since end June I've been on nivo alone. I had immune related adverse event in April-May so the nivo restart was delayed. Apart from that, it's doing its stuff and I don't have any of the common side effects you'll be familiar with.
I should say the treatment is 4 weekly and I am being tested for several possible harmful side effects every 4 weeks before treatment. The only thing I am concerned about whether long term treatment could damage my existing kidney, but they do test for kidney function, also I have scans every 3 to 4 months.
Thanks for reply anything I’ve seen most seem to be good. Some have no side effects or minimal side effects. As long as it works and I can carry on as normal for a long long time
Regarding the two year duration, I'm in Scotland. I'll have a review at 2 years because all the benefit is in the first 2 years. Then we'll take it from there. We might continue or try another immunotherapy. Some cancers are more strict and it's a def 2 year limit. Don't know why - licence perhaps? But the objective is to take Nivo to it's max benefit.
I was told initially that the restriction of 2 years was a financial one! What I have learned is what works for one may not work for another. Important to remember that there are new treatments being discovered all the time.
I was talking to someone online who’s oncologist has patients stable 5 years plus on Nivolumab. Oncologist told me if it works, and any side effects were manageable I would stay on it till it stopped working. No mention of a 2 year limit.
I just read your profile Ian. My RCC had already spread to my lungs on detection, so too late for a nephrectomy. 7 months after I started the ipilimumab / nivolumab some of the lung metastasis are now undetectable.
