Good morning,
My husband was diagnosed in June with stage 4 kidney cancer that had spread to his spine and pelvis and also a separate lung cancer. He was started on immunotherapy, ipilimumab and nivolumab, he had two treatments with of the two drugs but unfortunately developed some side effects. He had a horrid chest infection, then developed a type of arthritis which gave him horrendous joint pain, his liver function was affected and also his thyroid. His immunotherapy was stopped and he was given steroids which helped massively. When things had settled down the doctors decided he could start the immunotherapy again but is now only on one drug, the ipilimumab. He has also had two infusions of the one drug and also a bone strengthening drug, Zometa and all appeared fine until he got diarrhoea quite badly. We thought this was a one off but on Friday he had a huge attack of diarrhoea, vomiting and stomach cramps. He was advised to come to our local hospital and has now been diagnosed with Colitis, again caused by the immunotherapy. The doctor has now said they think the immunotherapy will have to stop as it’s triggering these potentially dangerous side effects. My question is where do we go from here. I think we had both really pinned our hopes on the immunotherapy and feel that we have no idea what they will do now. The immunotherapy had been working all the tumours had shrunk so it’s just devastating that this has to now be stopped. My husband has been amazingly strong through all of this but now he is starting to wonder what next as it really seems to be two steps forward, three back. We had even began to talk about him going back to work as he felt so well.
I’m sure this is the same for many people but we really just need a break and some positivity as we are both struggling.
Thank you x
Another immunotherapy drug perhaps? I am on ipi/nivo and if that didn't work for me, my onco has another immuno drug lined up, in the TKI group. There are loads of immunotherapy drugs. They're not all the same. So one might be tolerated better than others.
BTW it's a bit strange that they restarted on the ipi, not the nivo. Because the nivo is the mainstay of the ipi/nivo as the ipi is just used for cycle 1-4. You could ask why? And why not try nivo on it's own?
Hi Mmum,
Thanks for your reply. I may have the drug wrong, it could be he’s continuing on Nivo, I will check with the doctor and ask about a different drug.
Thanks again.
Hi Andy I hope you don’t mind me asking . Was you stage 4 when they removed your kidney or was that stage given after a later ct scan . It’s just I have read my ct scan and I know mine has spread pre treatment so I wondered if they would still bother . It is a large tumour . I do hope to have it out and a similar success story to your self
Hi Kyle , just so you know that sometimes they will take kidney out if you are stage 4 . They will shrink your other tumours first and then remove the primary one . Every case is different of course . I believe your appointment is today so no doubt all will become clear then . Good luck
Hi Kyle,
My primary tumour was 25cm long and 19cm wide. Thankfully it was contained in the kidney. It was removed and I survived the op after a couple of hitches.
yes, they will bother. I have about 18 mets in my body after the primary was removed. Largest is 5cm x 8cm.
Keep the faith you can be helped and then you’ll receive follow-up care & treatment. Possibly immunotherapy and or TKI therapy.
I hope you’re symptom free.
bob
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