Here’s my Plan E, No Plan F. Merck PD 1

Forums General Melanoma Community Here’s my Plan E, No Plan F. Merck PD 1

  • Post
    NYKaren
    Participant
      Hi everyone,

      As many already know, I have been on Zelboraf, intermittent dosing, since the beginning of the year. Three weeks on, two weeks off.
      During the last off period, previously-flattened (meaning disease-free) mets on scalp/ear began growing again.

      Hi everyone,

      As many already know, I have been on Zelboraf, intermittent dosing, since the beginning of the year. Three weeks on, two weeks off.
      During the last off period, previously-flattened (meaning disease-free) mets on scalp/ear began growing again.

      As some also know, I’ve been trying to get into an anti PD1 trial for close to 2 years now. The restrictions have always stopped me, or when a new trial opened, I didn’t have the measurable disease required, having been a partial responder to several therapies. So when I had this “progression”, which halted upon resuming Zel, I photographed it & sent to onc. We decided together that since this will LIKELY turn into measurable disease, to stop Zel yesterday. MRI of brain & CT of chest & abdomen scheduled for 2 weeks from today. he said MRI should pick up measurable disease. I just feel that now is the time, because if PD1 fails me, I still have working Zel in my back pocket. Of course I’m second-guessing myself that I should have started last week, etc. etc. I guess that if after 2weeks they’re growing but not to 1cm required, I can postpone a week. But as our beloved Boots used to say: Don’t Look Back; Don’t Back Down.

      That’s my story and I’m sticking to it, albeit nervously.
      Karen

    Viewing 5 reply threads
    • Replies
        awillett1991
        Participant
          Karen,

          You go girl! Sounds like a very reasonable plan to me. We all must make the best decisions we can and don’t look back. Jumping through the trial hoops is nerve wracking, but you can handle it!

          Amy

          awillett1991
          Participant
            Karen,

            You go girl! Sounds like a very reasonable plan to me. We all must make the best decisions we can and don’t look back. Jumping through the trial hoops is nerve wracking, but you can handle it!

            Amy

            awillett1991
            Participant
              Karen,

              You go girl! Sounds like a very reasonable plan to me. We all must make the best decisions we can and don’t look back. Jumping through the trial hoops is nerve wracking, but you can handle it!

              Amy

                NYKaren
                Participant
                  That’s for sure, Amy.
                  No prior Remicade might still be in force for another company’s trial, no tumors on prior-irradiated skin, not more than 2 prior therapies… at one time the list seemed insurmountable. I guess this is the result of the FDA fast-tracking Merck’s drug–more trials, fewer obstacles.
                  Thanks for your good wishes, it means a lot.
                  Karen
                  NYKaren
                  Participant
                    That’s for sure, Amy.
                    No prior Remicade might still be in force for another company’s trial, no tumors on prior-irradiated skin, not more than 2 prior therapies… at one time the list seemed insurmountable. I guess this is the result of the FDA fast-tracking Merck’s drug–more trials, fewer obstacles.
                    Thanks for your good wishes, it means a lot.
                    Karen
                    NYKaren
                    Participant
                      That’s for sure, Amy.
                      No prior Remicade might still be in force for another company’s trial, no tumors on prior-irradiated skin, not more than 2 prior therapies… at one time the list seemed insurmountable. I guess this is the result of the FDA fast-tracking Merck’s drug–more trials, fewer obstacles.
                      Thanks for your good wishes, it means a lot.
                      Karen
                    aldakota22
                    Participant

                      Karen ,hope you get just enough measureable disease to get into PD1 trial.Then pray that you are able to kick melanomas  butt. With your resolve I know you can.All the best. Beat the Beast.    Al

                      aldakota22
                      Participant

                        Karen ,hope you get just enough measureable disease to get into PD1 trial.Then pray that you are able to kick melanomas  butt. With your resolve I know you can.All the best. Beat the Beast.    Al

                        aldakota22
                        Participant

                          Karen ,hope you get just enough measureable disease to get into PD1 trial.Then pray that you are able to kick melanomas  butt. With your resolve I know you can.All the best. Beat the Beast.    Al

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