Update on Yervoy reinduction and PD1 trial frustration

Forums General Melanoma Community Update on Yervoy reinduction and PD1 trial frustration

  • Post
    NYKaren
    Participant

      Maybe the 3rd time typing this will be the charm.

      Maybe the 3rd time typing this will be the charm.

      I had my 3rd infusion on Thursday, and right after that my diahrrea went from controlled by Budesonine to having to add a 2 week course of Prednisone, to yesterday landing in the hospital.  Long story short, after much Dilaudid, CT scan and IV stroids, I have colitis and am now on 60 mg. Pred. 2x/day in addition to the Budesonine. Tapering hasn't been discussed yet.  Fourth infusion might be postponed if I get it at all.  He did say that we were looking for an imminune response, and we definately got it. At least i have until week 16 to finish Yervoy, and 4th infusion is usually at week 10, so I have 6 weeks to get over this. Also really bland diet–that helps a lot.

      I have stage IIIc unresectable mel.  The areas that have mets large enough to qualify me for the new cohort of the BMS trial are on site on my scalp that was originally irradiated.So they don't count.  From my scalp down  my neck are mel satellite mets,  but none of the "fresh" ones are big enough!  Frustrating unless next PET scan shows more mel, which wouldn't be so good either.   

      So tomorrow I go back to Dr. Halpern so he can continue freezing and we will probably add aldera.  I am insisting that leave the two largest mets alone to see if they grow large enough for the trial.    Good news is that the tweezed eyebrows that are growing back in are white.  Dr. Wolchok is very happy about that.

      I know I'm hanging my hat on a trial and that's pretty crazy.  I wonder if they continue to have good results on the Merck and BMS trias, how long it would take to get FDA approval?  Can any of the more experienced members here even hazard a guess?  A year, five, ten??

      If you've gotten this far, thanks for reading.  any input appreciated.

      thanks,

      karen

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    • Replies
        aldakota22
        Participant

          Trying this again.You are one tough cookie.Hope it only gets better for you from here on.Sending prayers your way.Always looking for your posts.  Al

            NYKaren
            Participant
              Al, you have no idea how much your kind words mean to me tonight.
              It helps remind me how much others’ support can lift spirits. Also I think the steroids are doing a number on my head!
              Also, upon re-reading I see I was unclear/rude…the “he” to whom I refer in 1st para. is Dr. Wolchok.
              karen

              aldakota22
              Participant

                I am sure everybody on this site feels the same way I do.Just kind words can lift the spirits.Something that helps me thru   rare moments I allow myself to be down.Wish I could do more   Al

                Karin L
                Participant

                  I don't think you are crazy at all Karen.  I keep asking (ok, bugging) my onc. about the PD-1 trials and keep pressing him to make sure they try to get them.  It's in the near future I hear from him.  When the time comes I need to go back on systemic treatment I hope to qualify and hope it's available.  It does sound so promising and makes it so frustrating in the meantime.

                  Karin

                  Karin L
                  Participant

                    I don't think you are crazy at all Karen.  I keep asking (ok, bugging) my onc. about the PD-1 trials and keep pressing him to make sure they try to get them.  It's in the near future I hear from him.  When the time comes I need to go back on systemic treatment I hope to qualify and hope it's available.  It does sound so promising and makes it so frustrating in the meantime.

                    Karin

                    Karin L
                    Participant

                      I don't think you are crazy at all Karen.  I keep asking (ok, bugging) my onc. about the PD-1 trials and keep pressing him to make sure they try to get them.  It's in the near future I hear from him.  When the time comes I need to go back on systemic treatment I hope to qualify and hope it's available.  It does sound so promising and makes it so frustrating in the meantime.

                      Karin

                      aldakota22
                      Participant

                        I am sure everybody on this site feels the same way I do.Just kind words can lift the spirits.Something that helps me thru   rare moments I allow myself to be down.Wish I could do more   Al

                        aldakota22
                        Participant

                          I am sure everybody on this site feels the same way I do.Just kind words can lift the spirits.Something that helps me thru   rare moments I allow myself to be down.Wish I could do more   Al

                          NYKaren
                          Participant
                            Al, you have no idea how much your kind words mean to me tonight.
                            It helps remind me how much others’ support can lift spirits. Also I think the steroids are doing a number on my head!
                            Also, upon re-reading I see I was unclear/rude…the “he” to whom I refer in 1st para. is Dr. Wolchok.
                            karen

                            NYKaren
                            Participant
                              Al, you have no idea how much your kind words mean to me tonight.
                              It helps remind me how much others’ support can lift spirits. Also I think the steroids are doing a number on my head!
                              Also, upon re-reading I see I was unclear/rude…the “he” to whom I refer in 1st para. is Dr. Wolchok.
                              karen

                            aldakota22
                            Participant

                              Trying this again.You are one tough cookie.Hope it only gets better for you from here on.Sending prayers your way.Always looking for your posts.  Al

                              aldakota22
                              Participant

                                Trying this again.You are one tough cookie.Hope it only gets better for you from here on.Sending prayers your way.Always looking for your posts.  Al

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