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I don’t know what to expect at this point
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I don’t know what to expect at this point

› Forums › Cutaneous Melanoma Community › I don’t know what to expect at this point

  • Post
    • October 4, 2020 at 3:17 pm
    Socks
    Participant
      I was originally diagnosed Stage IIIC nodular melanoma back in 2014. I was NED after surgical resection for almost 5 years and then it came back in February of 2019 – and it’s on my liver now, which bumped me up to Stage IV (there’s also an infected lymph node (we think) in my neck, but that’s closer to the primary site, which was the back of my head). I made it through three cycles of Ipi/Nivo, did a short-term, high-dose course of radiation, and have been on Nivo alone since then. The last few CTs (and even an ultrasound!) showed the liver tumor shrinking. But a recent PET showed a lot of activity over a lot of area there. My oncologist thought it was inflammation and sent me over to talk to a liver surgeon about possibly getting the bad area just cut out. He (my onc) also scheduled me for an abdominal MRI as well as the brain MRI I usually get because, well, primary site was my head, so he wants to be careful.

      There’s no melanoma in my brain, but there’s more on my scalp now (I knew about one bump, but the scan shows more than one). And there are now at least 10 spots of what looks to the radiologist like melanoma on my liver AND one on my spleen, so it looks like I won’t be getting the liver surgery after all.

      And all I can think at this point is… now what? Are we just out of options? Do I go back on Ipi & Nivo? Is this just the end?

      For so long I only had the one spot on my neck and the one on my liver. And I got the news from the liver surgeon on Friday, right before he called my oncologist, so I’ve just spent the whole weekend basically sleeping as much as possible so I don’t have to think about the fact that my treatment seems to have failed and that I may be dying a lot sooner than hoped.

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    • Replies
        • October 4, 2020 at 5:42 pm
        AMcReader
        Participant
          Ugh, I’m so sorry for what you are going through right now. I just recently experienced progression after success on Ipi/Nivo and even getting to that sweet spot of no treatment for the past 18 months, and it really messed with me mentally.

          The good news is that there are still other treatment options for you. A retry of Ipi/Nivo is one of those options. I’m BRAF positive so I’m currently on Vemerafenib and Cobimetnib (BRAF/MEK inhibitors) and will start Biweekly infusions Atuzolizomab alongside that on 10/13. This is essentially a combination of BRAF inhibitors to get me quick response, plus an immunotherapy to help me get that durable response.

          Beyond that, there are clinical trials that are definitely worth looking into. Personally, I’m always interested in TIL therapy, which does take a longer time to get started, but might be a good option for you.

          I know others on this board will respond with their ideas, but don’t give up hope yet!

          We’re here cheering you on!

            • October 4, 2020 at 7:09 pm
            Daisy2018
            Participant
              Darling,
              Don’t give up hope yet. It’s terrifying for sure. There are still lots of treatment options available.
              Somebody said here here than melanoma is unpredictable. You just need to find a right treatment. I have read here how people were finding treatments which finally worked after many failed. I’m interested in this TIL trial too. It seems like very personalized approach to your specific tumor cells. Don’t give up hope.
              What is your doctor saying?
              • October 5, 2020 at 1:39 am
              Mark_DC
              Participant
                Dear Socks

                Am sorry you received this bad news – and also on a Friday so you have had to stew over the weekend.
                Celeste / Bubbles has made some posts on her blogs about what options exist after progression. Also a few months back MarkR was considering his options and these included TIL as Daisy2018 suggested.
                I still think you would need to know a few more details as I think you said your liver tumour was shrinking but now there are more spots – so what are these? Any chance not melanoma? You mention “looks like” so maybe they are not

                I think you are BRAF negative but maybe you can re-check this
                For me TVEC with Pembro worked when Pembro alone did not work, but I dont know if your lesions are injectable (probably not)
                Then you have TILs or trials like MarkR or MelanomaMike have been considering or trying – and I think at a recent oncology meeting there were reports on trials (ESMO ? Check Jason Luke or Hamid on twitter)

                I hope your doctor is a good one and a melanoma specialist and open to all options. And then that you can meet her/him soon to discuss options – and despite this possible bad news I think there are quite a few
                I hope experts will chip in soon too
                Am sorry for your weekend and hope you get more and better news this week
                Take care Mark

                • October 6, 2020 at 6:30 pm
                Socks
                Participant
                  Well, it’s hard to tell from an MRI what the spots are. It’s most likely they’re cancer, because, well, there’s a big ol’ tumor sitting right there on the left hepatic lobe. But livers get benign masses all the time. So… maybe? ‘Course there’s also the spleen… and all over my scalp, apparently. >_O UGH.

                  I am BRAF negative. Or, at least, my initial tumor was, back in 2014. I’d be surprised if any of these are any different.

                  My doctor – Dr. Lao at University of Michigan – is a great doctor, honestly. He listens to me, he respects my decisions, and he gives me all the information I need to make those decisions, along with his professional opinion, but still lets ME decide MY treatment. I really like the liver surgeon, too; too bad I likely won’t be seeing much more of him.

                  • October 6, 2020 at 6:27 pm
                  Socks
                  Participant
                    TIL sounds fascinating. We’ll have to see what my options are.

                    I speak to my oncologist tomorrow. In the meantime, I spoke to my psychiatrist, and I told him what a big help y’all have been. Even just having some *idea* of what options are out there has helped a lot, because I really didn’t know them. Just knowing that this isn’t the end of the road was already such a relief.

                    • October 6, 2020 at 6:25 pm
                    Socks
                    Participant
                      Yeah, I’m BRAF negative, but that TIL stuff sounds *really* good. Not sure if U of M(ichigan) is doing any of those, but I suppose I’ll find out tomorrow when I see my onc.

                      I’ve said since the beginning that if we ran out of things U of M could do for me, that I’d be going straight to M.D. Anderson. My mom went there for her Non-Hodgkin’s lymphoma and I was her caregiver, so I’m very familiar with MDA. I know melanoma is a moonshot for them, that they have lots of clinical trials, and, if nothing else, there’s that feeling of familiarity which would be such a comfort.

                      Plus I already know some of the best restaurants in the area! xD

                    • October 4, 2020 at 5:42 pm
                    AMcReader
                    Participant
                      Ugh, I’m so sorry for what you are going through right now. I just recently experienced progression after success on Ipi/Nivo and even getting to that sweet spot of no treatment for the past 18 months, and it really messed with me mentally.

                      The good news is that there are still other treatment options for you. A retry of Ipi/Nivo is one of those options. I’m BRAF positive so I’m currently on Vemerafenib and Cobimetnib (BRAF/MEK inhibitors) and will start Biweekly infusions Atuzolizomab alongside that on 10/13. This is essentially a combination of BRAF inhibitors to get me quick response, plus an immunotherapy to help me get that durable response.

                      Beyond that, there are clinical trials that are definitely worth looking into. Personally, I’m always interested in TIL therapy, which does take a longer time to get started, but might be a good option for you.

                      I know others on this board will respond with their ideas, but don’t give up hope yet!

                      We’re here cheering you on!

                      • October 4, 2020 at 5:43 pm
                      AMcReader
                      Participant
                        Ugh, I’m so sorry for what you are going through right now. I just recently experienced progression after success on Ipi/Nivo and even getting to that sweet spot of no treatment for the past 18 months, and it really messed with me mentally.

                        The good news is that there are still other treatment options for you. A retry of Ipi/Nivo is one of those options. I’m BRAF positive so I’m currently on Vemerafenib and Cobimetnib (BRAF/MEK inhibitors) and will start Biweekly infusions Atuzolizomab alongside that on 10/13. This is essentially a combination of BRAF inhibitors to get me quick response, plus an immunotherapy to help me get that durable response.

                        Beyond that, there are clinical trials that are definitely worth looking into. Personally, I’m always interested in TIL therapy, which does take a longer time to get started, but might be a good option for you.

                        I know others on this board will respond with their ideas, but don’t give up hope yet!

                        We’re here cheering you on!

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