Nivolumab & ilipumumab Vs Nivolumab & retalumab

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Hello again, I'm stage for nodular scalp melanoma with pelvic mets. Braf positive.  History of heart attack 2020. Offered these 2 treatment options. Difficult decision, wondering if anyone else had similar decision to make. Any advice. I've read cardiac specific AE slightly higher with niv/retalumab but far less likelihood of grade 3 & 4 adverse effects. 23 percent compared with upwards of 60 percent ipi/Niv. But that ipi/Niv for Braf mutant, to treat aggressive disease. Oncology registrar I saw for consent not really guiding either way 

  • Hi  

    It must be very difficult trying to decide which type of treatment to have and not something I had to do.

    I wondered if you meant nivolumab-relatlimab when you said nivolumab and retalumab as I couldn't find any reference to the latter. If so  has recently posted about their experience with it here. Also, having tagged them into my reply to you, hopefully they'll pop on and share their experiences.

    Meanwhile, clicking here will take you to posts which mention nivolumab and ipilimumab, again if you meant ipilimumab rather than ilipumumab.

    Wishing you all the best with which ever combination you decide on.

    Anne

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

    • Yea, sorry about spelling errors. And Thank you again Latchbrook. 
  • Hi there, I faced the same choice two years ago for my melanoma skin cancer on scalp which had travelled to my lymph nodes in my neck. The Oncologist presented the two options and said results so far both showed 70% survival rates after five years. I was given leaflets about the two options showing likely side effects, which were broadly similar, but the ‘ipi’ option had a few more side effects than the ‘relat’ option. The clinching factor for my choice of opting for ‘relatlimab’ was that it had only been approved by NICE a few months earlier and I hoped that a newer drug might be more effective. I have just completed my 26 months’ course with just minor side effects, mostly occasional fatigue, and this week my latest CT Scans showed no signs of any metastasised cancer. So, I can only say that I am absolutely delighted with the treatment I’ve had but as your Oncologist will have told you it is impossible to predict which individuals will endure which particular side effects. Whichever one you opt for the important thing is to remain positive and try to fill your life with hobbies and experiences you enjoy. Best of luck, Paul

  • Hi Paul, thank you so much for your reply. Glad to hear about your positive response to treatment. I started my first course of immunotherapy yesterday. In the end I opted for Ipi/ Niv purley as the statics given to me by the oncology team suggested it gives a slight  improved progression free interval than rela'  Stage 4 bone mets and BRAF mutation. However,  I wasn't given any 5 year data on Relat just 3 -4 year data. Like you I do wonder if Niv/ Relat may prove to be more effective and of cause with far less likelihood of severe, potentially long term side effects, which appealed to me. Anyway it's certainly worked for you. I too am trying to be positive and getting on with life, feel I have a chance of long term survival with immunotherapy. Good luck for the future Paul. And again thank you. Always great to hear positive results.