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stage 4 and timing
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stage 4 and timing

› Forums › General Melanoma Community › stage 4 and timing

  • Post
    • July 31, 2024 at 12:15 pm
    tkoss
    Participant
      My onc did me a big disservice…for what ever reason he failed to communicate to me I had Stage 4 last summer….so that’s a year I was unaware….I am taking opvido so likely the treatment would be the same but my lifestyle would have changed. 65% SR is not 25% SR.

      my question is: when did the clock start?

    Viewing 6 reply threads
    • Replies
        • August 1, 2024 at 3:47 pm
        ed williams
        Participant
          This is no clock in stage 4, you either respond to Ipi + nivo or you do not, scans and follow up are now part of life. If the immunotherapy did the trick then follow up ct scans 4 times a year would make sense. I would also ask for MRI of the brain at least twice a year to make sure there is no progression there. Stage 4 since 2013 and still kicking, it does get easier with time.
          • August 1, 2024 at 7:33 pm
          JudiAU
          Participant
            There is no clock but he did you a disservice by denying you access to a higher level of drugs? Is that the case? You have only had single agent? What level of scans have you had? Where do you or did you have Mets? I would personally switch oncologists, switch drug regimes, and wipe out the Mets if you can. They had more time in your body to replicate without the best treatment and you should be angry.
              • August 2, 2024 at 12:20 am
              ed williams
              Participant
                JudiAU, he had Ipi+ nivo, and is now on single pd-1 drug, so treatment would not have been any different.
                • August 4, 2024 at 12:06 pm
                tkoss
                Participant
                  He did not deviate from single treatment, opvido , since he decided I was state 4 last summer.

                  What are my treatment options? i am considering find a new doctor.

                  there are a few LN’S involved in my abdomen, so I understand removing them…but what are the medical options. I am braf+

                • August 2, 2024 at 8:52 pm
                Lucas
                Participant
                  What type of recurrence? I had an oligometastaic recurrence in a previous spot after 3 years ned from ipi-nivo. I was then put on 2 cycles of relatlimab-nivo. The tumor was very palpable in my groin, but shrunk dramatically. After removal it was mostly necrotic with less than 10% tumor involvement.
                  • August 3, 2024 at 3:08 pm
                  tkoss
                  Participant
                    it went from my axial LN to abdominal LN…somewhere along the iliac /aortic something or other

                    i have been on opvido for nearly 2 years and it sill spread

                    am i gonner and how soon?

                    • August 4, 2024 at 5:42 pm
                    Lucas
                    Participant
                      No you’re not a goner…I was a goner at one point also until I wasn’t. I’m guessing it’s a retroperitonal lymph node? Anyways if that’s it and hasn’t gone to your CNS. That is oligometastatic and if it’s in only one spot your statistics are favorable. However, I would want to be put on nivo/rela it’s a different pathway. It’s kind of like starting over and I would want to treat aggressively. Keep us posted, praying for you determinately!
                      • August 5, 2024 at 1:34 pm
                      tkoss
                      Participant
                        here are the reports: i can’t really understand them other than petscon seems to play down metastatic melanoma but CT says the opposite…..onc is useless in explaining

                        from july scans

                        PETscan; concerning for mesenteric pannicullitus inflamation vs. lymphoma vs. metastasis

                        and

                        CT: evidence of ileocolic and aortocaval lymphademonathy, likely metastatic

                        —
                        neither say it is melanoma that migrated from upper axial LN’s. in fact no report say LN, some say “nodular” but not LN. Are they the same? And whenever it says ‘metastatic ‘ but not “melanoma” should i assume it to be melanoma?

                          • August 5, 2024 at 9:43 pm
                          ed williams
                          Participant
                            Post the whole report, and many will be able to give you a helping hand. Usually if it does not give size of tumor then there is no tumor and with a PET-ct, they will give size of tumor plus SUV uptake. They will also say new spot or new growth when compared to old scans or change in size of previous biopsied tumor, either smaller or larger. Summary section usually spell things out based on opinion of person viewing scans.
                          • September 29, 2024 at 1:40 am
                          mmbraddock
                          Participant
                            I agree. Sounds inconclusive, seems like you should have had an FNA? Did I miss that? So sorry you are having to deal with this nasty disease. It’s tough. Hope, courage and grace to you on your journey, Hope it gets easier.
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