Hi. I have this treatment for stage 4 kidney cancer and hoped to find someone else going through the same? I know the NHS in England & Wales haven't given the go-ahead for this as it's too expensive so what do all of you have instead?
Hi, sorry to hear you have stage 4 kidney cancer. I too am stage 4 and has spread to bones and small nodules on lungs. My treatment currently is cabozantinib which I have been on for 6 months . My first scan showed slight reduction in my kidney cancer and stable elsewhere. Where are you ? Regards
Hi Rose. Sorry to hear of your diagnosis. I was diagnosed 9 months ago and have had 8 cycles of immunotherapy and have the Axitinib pills twice a day. It is these that give me the side effects of Palmar-Plantar and Mucositis which was quite bad early on. My mouth was so sore but no open ulcers or sores. That led to my dose being reduced to the minimum but my first scan showed my kidney (just in one kidney) went down by a third and up to a third in the lungs and lymph. The skull tumour, they say, is quite small at 18mm but that sounds big to me. The oncologist who specialises in radiotherapy said I could give her a ring if it became painful and she would zap it within days! Couldn't ask for better. So far so good though - I had a severe pain right at the beginning (which was how they found it as my head hadn't been scanned before). I had a tiny tumour in my pelvis and then began to worry about hairline fractures (courtesy of my cancer nurse!) and sat still for 3 weeks thinking my pelvis could collapse. After the next scan, they said not to worry (easier said than done) and gave me a complete bone scan to check for anything else. How are your bones? Is it painful? Does it limit you in any way? x
Hi chillamum, Immunotherapy didn’t work for me. I have lesions on the top of my leg, and in my shoulder. They were both very painful and left me unable to even get off of sofa, but between my doctor and oncologist I am now on pain medication which helps a great deal and I am now able to function a bit better. I have a wheelchair and mobility scooter to help me as I can’t walk very far. Hope treatment works for you
Hello Rosethorns. Sorry to hear you've had a bad time but I hope the pain medication is keeping you going. Your scan is next week- October already! Hope the results show something good. Let us know... Take care x
