Stage 4 melanoma immunotherapy not worked is there other options?

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Hi everyone, 

I'm posting on behalf of a family member who has a stage 4 melanoma only found straight away at stage 4 in January. He has had 3 rounds of the ipi/ nivo immunotherapy and we have just found out this is not working... 

Can anyone tell me if this happened to them and if so what other options were available to them? I am aware it depends on what BRAF mutation they have but if anyone could share a similar experience we'd be so grateful. 

  • Hi  and a very warm welcome to the melanoma forum which I hope you'll find is both an informative and supportive place to be.

    I'm sorry to read that the immunotherapy that your family member is having has not worked. This must be a very worrying time for you all.

    I can't help with your question but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    I'm sure some other forum members will be along soon and, while you're waiting, it would be great if you could put something about your family members diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hi Manchester,  I'm sorry to hear that the ipi/nivo combination isn't working for your relative.   I have Stage 4 melanoma and I reacted very badly to ipi/nivo amd have suffered so badly with side effects that I cannot continue with it anymore.   However,  I am BRAF positive and so I can have an alternative treatment of dabrafenib / trametinib, which are cancer growth inhibitors.  I am due to start treatment next week so I can't tell you much about it.  I'm not sure what is available if BRAF  negative. 

    I wish your relative all the best- it's a horrible thing to be going through. Xx

  • Hi Manchester 

    I had Ipi/Nivo last year but had a really bad reaction to it (deranged liver function amongst other things) so it had to be stopped… for the past year I’ve been on Encorafenib / Binimetinib (targeted treatment of tablets). Things have stabilised a bit with that… so yes there are other options although of course everyone responds differently. At the end of last year I was referred to the Royal Marsden to discuss clinical trials but that’s on hold for now as my current treatment is holding its own. 
    There are new treatments becoming available all the time, mine wasn’t even an option 2-3 years ago so it is a hopeful time (though of course we all wish we didn’t have to be a part of that…!!)
    Wishing you and your relative well x

  • Hi Manchester, 

    I'm so sorry that your family members treatment hasn't been effective yet. It is such a worrying time. My partner has been having targeted therapy for his stage 4 melanoma for the last year and he is having his last ct scan right now. So far and as far as we know, it has worked for him. He has the BRAF mutation but I think it could work for you too. Worth asking? It might be worth going to your local Maggies and asking for any further advice? All the best x

  • Hi, sorry to hear your family member has had a hard time. I also have Stage 4 Melanoma and suffered terrible side effects. I too could only manage 3 rounds of the combined drugs before I was hospitalised with progressive liver failure. I am about to start Targeted Therapy tomorrow. My doctor explained this should help manage my symptoms and I may get some more shrinkage. 
    I find the cancer nurses on my team very helpful and always go to them if I have any questions, if your relative has them on their team I would contact them.

    There is also a website called Melanoma Focus where you can search for and put yourself forward for trials. 

    I wish you and your family member well.