I had a radical nephrectomy 9 weeks ago, I was informed it was a very aggressive cancer and there is a 50% risk the cancer will return. They have offered me immunotherapy treatment but I am concerned regarding the side effects and also the risk of permanent damage to my other organs. I was hoping to hear of your experiences with immunotherapy to help with my decision making. Thanks in advance.
Hi - I've been on immunotherapy since Jan 2022 and its doing its stuff at controlling the cancer. I've had a few niggling and minor side effects and one more impactful side effect of too much inflammation in the kidney, impairing function and causing an 8 week pause in treatment.
When they tell you all the possible side effects, it sounds so risky and horrible. But no one gets ALL the side effects, perhaps the odd one and its maybe not debilitating. My nurse practitioner told me at the start that my immunotherapy (ipi/nivo) was much better tolerated than a lot of other treatments they managed. No one warned me against permanent damage to other organs, although my kidney function has taken a slight hit and it's not back to its pre-immunotherapy levels. No regrets here though.
I think the immunotherapy for adjuvant therapy after a nephrectomy is def more impactful than the stuff I'm on. We have members on here who have tried it but stopped because of the side effects. Can't remember which is is - pembrolizumab?
My minor side effects have been dry mouth, slight itching (attributed to ipilimumab) at the start, none now. Dry eyes. But I feel so much better, normal even, since I started.
You can always try it for a bit and stop if it doesn't suit. But the effects of these drugs stay in the system even after you stop taking them.