Hi, undergoing immunotherapy and the above detected on latest scan, in chest. Doc reasonably relaxed says let’s see next scan. Has anyone else any experience of this, thank you
My husband is having immunotherapy (nivolumab) , August scan showed enlarged lymph nodes and adrenal gland. They rescanned in September and although still enlarged not grown so are going to look again in January scan . I think as long as it's slow growing and your tolerating your treatment they happy to watch and wait .
Hello Wcd, my hubby just starting Nivolumab for kidney cancer mets. We cannot find very much info about it. Our Oncologist gave us a choice either TKI therapy or immunotherapy. To be honest we hadn’t a clue and decided on immunotherapy in the hope that the spread could be stopped all together. So he is on 2nd cycle and just starting to feel, hot, sore feet and very tired. Can I ask what your experience has been with this drug and what made you or your oncologist decide on it. Any info great
My hubby wasnt given a choice it was very much a case of this is the best option for you . It was only after that we looked into it and it seems to have the fewest side effects. My husband had 4 doses of ipi/nivo combination and is now on nivolumab only I think it's dose 12 . He was sick on the combination dose but now mostly tired anecdote joints.
If you're on Facebook there are 2 kidney cancer support groups and an ipi/nivo support group , theyve been invaluable to us for information .
Thank you, I have now found them on FB, greatly appreciated and more helpful info to look at. After reading some info I presume Paul will eventually drop the dual drug and just have Nivo. Its like being blind and heading into the unknown, we have to rely on science and what each individual oncologist thinks. Take Care - Debbie
Glad you found them Debbie , it really is the best support and information you will get for kidney cancer . I don't post on it much but check in everyday . Best wishes Wendy Davis
Hi all I know this is an old thread, but could you possibly link or give me the names of the Facebook kidney cancer support groups? Thank you very much
Kidney cancer UK support group , it's a closed group so you need to join it , that way you can talk openly and nothing you post there will show on your Facebook page .
Theres also a new one for carers although carers are welcome on main page x
I went to join but it requires you to be living in the Uk and be treated at a Uk hospital or you can’t join. It’s so frustrating, we live in NZ and there are no active kidney cancer support groups. I’m so disheartened
