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Please opinion needed treatment options

Forums General Melanoma Community Please opinion needed treatment options

  • Post
    Daisy2018
    Participant
      Hello friends,
      I don’t post often but now I really need your opinion folks.
      I have received Optivo/ Yervoy 4 doses and 1 dose of Optivo for my stage 4 melanoma.
      Finally had a scan.
      The scan showed most of the lesions decreased in size, some staying the same size, couple gotten slightly bigger. No new ones grown. I have lots of bone Mets.
      So looks like my immune system is responding somewhat slow, right?
      If you had a chance at the TIL trial.
      Would you do it or would you continue getting Optivo?
      Thanks a lot!
    Viewing 3 reply threads
    • Replies
        Mark_DC
        Participant
          Dear Daisy,

          I am sorry but I am not an expert, and also I dont want to give you bad advice. You may need to wait for experts like Ed or Celeste to post or others to give their views. But you did seem urgent so I want to try to help.

          Celeste has always said that immunotherapy can take time, be patient with the patient. I am guessing these are your first scans after three months. So while you dont give precise measurements or numbers, they dont seem that bad. You say you have lots of bone mets but I dont know how many and I presume these are what you started with. If so, then the results are not so bad.

          In my case my tumour burden was really low, w immunotherapy the tumour grew but very slowly so it was kind of working but not that well. I had to have TVEC to give the immunotherapy a push, but that was after one year of slow progression. You seem to have a much higher burden, but the immunotherapy is working better than in my case.

          What does your oncologist say? Is s/he a melanoma specialist? Unless the ones that grew slightly larger are a problem then the news seems good, and you will likely want to continue with this. And there are other trials too, not just TIL, in case this doesnt work.

          I am assuming you cannot use targeted therapy and that you are not BRAF positive, else this would be an extra option. But even then might be fine to keep w immunotherapy and hold this in reserve.

          I hope this helps a little, the scans dont seem so bad to me, well done and I hope you find the right answers

          Best wishes Mark

          Daisy2018
          Participant
            Thanks Mark, you are always so kind to respond right away.
            The targeted therapy is already in a past as well as Keytruda.
            Yes, the 3 months scans look kind of promising. There were several Mets that still had grown bigger. Not sure about tumor burden. My LDH has always been pretty low whereas my bones just kept crushing on me.

            The question is if there were an option of TIL available would you do it or keep going on Optivo?

            The criteria for TIL are pretty strict. Things can change quickly that may disqualify me later if I miss this chance. Considering if I still can qualify now.

            Daisy2018
            Participant
              What I can see with TIL it’s not readily available. You need to find an open trial. You need to travel most likely. You need to have a slot opened at the time when you need it. You need to be strong enough for the harvest surgery, for travel, for the treatment itself. You must to not have any Leptomeningial disease. LMD
              Folks with Mets get brain Mets grown all the time. Melanoma doesn’t pick and chose, it lands everywhere. You never know what next scan will show. With brain Mets come strict criteria to qualify. So pretty much it’s a small window.

              Mark_DC
              Participant
                Hi Daisy,

                I will reply since the experts are not replying yet (and I am concerned for you!).

                Personally, I think I would stick it out. This is your first scan (but you say you have had keytruda and targeted therapy before so I guess you must have had other scans before) and it is showing mainly good results but sadly a few bad. So it seems to be working but not well enough, but also it can take time.

                I have never had bone mets, am sorry for this and hope you are not in too much pain.
                In my case I was lucky as my disease was always local / regional – I dont think it spread to my lymph nodes even (I think later maybe it did but never tested too late), and my mets were all local / regional. So I never ran into brain mets and only had a brain scan once a year.

                My honest advice would be to make sure you are being treated by a melanoma specialist and ask his or her opinion. And also ask what is the backup plan. And at what stage should you change to the backup plan. My current oncologist says he has a backup plan(s) but I have no idea what it is. Fortunately his treatment worked where the other had failed so we didnt need the backup plan- but I guess w melanoma we always need to be thinking of one.

                You can of course always ask medical experts – like Dr Weber and others like Hamid in LA – for second opinions and options.

                I hope others here more knowledgeable will read too and help out
                Best wishes (and happy easter!!)
                Mark

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