Sue here. Has anyone else in the group been diagnosed with CMM? If so, has anyone been offered dual agent immunotherapy with Nivolumab and Ipilimumab? If so, I'd be grateful for some feedback.
HiSue I have not had the same melanoma as you but I have had Nivolumab and Ipilimumab . I managed to have the 4 treatments and am now on Nivolumab only. The treatment drastically reduced my tumour burden I found the side effects of both worse than just taking Nivolumab. I felt tired ,had joint ache and a slight itchy pin prick rash on mainly my body and legs. On Nivolumab which I have been having for 30 months gives me less side effects and I only feel tired the night I have the infusion and also slight itchiness at times.
I have a scan every 3 months and so far things have remained stable or reduced in size. I am due a pet scan in August an£ then my treatment will be reassessed.
After reading your profile you have been through a difficult time. I do from my experience think that this treatment is amazing. Not everyone can tolerate the 4 infusions of both ipi and Nivolumab but I have heard it can work with less treatments. I wish you luck in your treatment.
Yes I had it on my thigh which was misdiagnosed by my GP and only after a second opinion 18 months later was it diagnosed as melanoma. I had a wider incision and SNB which said it had spread only minutely to my sentinel node I had a block groin dissection 7 years later I was feeling unwell and lost a lot of weight. After a few months of another doctor saying weight loss was due to stress I after a CT scan found it had spread to my lung ,near my spine and a large tumour about 18 cm near my kidney. I lost 2 stone in weight.
After lots of treatment my pet scan last year showed most had gone They considered stopping treatment and just regular scans but decided to keep me on Nivolumab for another year ad they saw a shiny area near my kidney. That’s why I said for me the treatment worked well. Good luck with yours As you can see I am writing this late in evening as not a great sleeper at the moment .
