Melanoma is back!

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I found a pea size lump just at the top of my right groin. My first words was “oh no” they said it may come back but I wasn’t expecting it 4 months after my immunotherapy treatment pembrolizumab. I was hoping for a bit longer before I faced that news. Had the lump removed on the 16th and the results on the 29th and there was melanoma there. On the 25th September I also had a pet scan as they were concerned about shadow on my lower spine. Had the results back today. I may have said some this before but writing it down, helps me put things in to perspective. The melanoma is not in my lower spine, it’s in my pelvis and in the muscle in my bottom right cheek and near my bowel. I was so upset that I couldn’t take it all in, the consultant didn’t sound very optimistic over the phone, all I heard was it possible could be terminal and worst case scenario a month or so, I was not expecting that at all. Has anyone had it spread to those areas of the body and what treatment was offered if any. I trying to be positive but it’s a little hard to take in.

  • Blaine, I'm sad to hear your news today.  It sounds like you've had a lot of info thrown at you and it's impossible to take it all in.    I'm not in exactly the same situation as you so I've no personal advice re possible treatment but I just wanted to reply and offer my support.  I'm sure someone else will reply with info on that.  It does appear that there are quite a few people who've continued to live well for many years following original diagnosis, treatment and recurrence so please keep hopeful.  Maybe ring the Macmillan support line or contact your oncologist for a clearer explanation of the available options?          Meanwhile take care and breathe...spend time with friends and family for support. Stay well x

  • Thank you for your support and kind words. When I speak to the oncologist tomorrow hopefully he or she can clarify what my options are. I will try to keep strong and positive.

  • Hello Blaine, I’m sorry to hear of your news and understand how devastating it can seem, and how difficult it can be to listen at these anxious times, we need to let little bits of information sink in. I’ve had 57 doses of Pembro and my melanoma is currently on the move. For me when I got the news they stressed that I wasn’t out of options, and they brought me in to explain the options two days after the news. I have 7 areas in my pelvic/abdominal area I think they are all lymph nodes but they mention stranding into nearby fat and mentioned where they are near, but after the reaction of it’s spread more than I thought, it was well thank goodness they haven’t mentioned that it’s in vital organs. Ive been incurable since my diagnosis in 2015, terminal in a phrase I like to reserve for when there is no option available. I was lucky enough to know what it felt like being a complete responder to treatment but also unlucky enough to know what it feels like when it lets us down.

     I have previously been rechallenged on Pembro when it’s started to spread again, because it had previously been very successful for me.I don’t know if that’s an option for you or if they consider a better option might be a different immunotherapy Ipilumamab. Pembro has after 57 doses run out of steam for me and has had its day but served me well. 

    I looked at your profile and don’t think you’ve had Ipilumamab  before. It has the great promise of complete response for some and the worst case of getting your own bodies immune system to over react, it’s something I’ve always held on to in my back pocket knowing that it was a possibility for me if things spread, so I’ve never thought of being out of options, but of course the thought of changing and things not working is very scary, but the thought of it working and not having further treatment is also a nice one as I’ve been there before and can visualise it. I will put a link below

    https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/ipilimumab-yervoy

    I am BRAF positive so I also have the option of returning to targeted therapy, Dabrafenib and Tramatenib and there is also a clinical trial at my hospital so I’ve been considering that and have opted for not ruling anything out, keeping as many options open as possible and listening to the points put forward by my team. https://clinicaltrials.gov/ct2/show/NCT03997474.

    Its been hard coming to a decision for me, I’ve been aware of Ipilumamab and Dabrafenib and Tramatenib for years as options and yet it was still hard. The first hard bit is accepting its back and a change has to be made, then the what are the options, and what are the team recommending for me and why and have they listened to what my priorities or thinking is.

    Good luck with your appointment  and I’m happy to chat if it helps.

    Take care KT

  • Hi KT, thank you for sharing, I really appreciate that. I’ve had a bit more time to think about things, I can’t say I’m not disappointed that the melanoma has come back and so soon but as you say it’s not in any of my vital organs, which gives me a fighting chance. I had a telephone call from the oncologist nurse who was really nice to talk too and felt better. She explained that I would have a telephone consultation on Tuesday to go through the next step which is 2 drugs ipilimumab and nivolumab which they will explain in more detail over the phone and on Wednesday to attend the hospital to sign concent  forms and to let me know when I’ll start treatment apparently there are high rate of side effects not looking forward to that. Thanks for the links x