My update and PD-1 Update

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  • Post
    • February 17, 2012 at 1:12 am
    NYKaren
    Participant

       

       

      I just got home from seeing Dr. Wolchok at Sloan.  As I've mentioned, while awaiting an Anti PD-1 trial, I've been getting my spreading mets frozen and applying Aldera.  the entire side of my face from my scalp onto my neck, where the mets are, is a red, swollen mess, but the treatment seems to be keeping the mets in check.  Obviously, the derm (Dr. Halpern) cannot keep chasing the mets as they spread, but they're pleased at the stop-gap measures.  There's a lot of pain involved, and I'm taking 10 mg. of Oxy on the days I use Aldera (about 2 doses/day.)  

      In the past 16 months, I've had WLE and negative SNB, 3 months later, recurrence w/met. satellites, putting me at Stage IIIc, radition, which stopped the spread for 1-2 months, then I was one of the first "commercial" users of Ipi (Yervoy) after its FDA approval.  I was a partial responder, then stopped responding.  Then 2 rounds (4 weeks total) of IL-2; i responded at first, which, in retrospect, I believe was due to the Ipi, then I did not.  I am not a cry-baby; I took all the IL-2 bags and they were all quite impressed.  But the pain from this Aldera/freezing is knocking me on my butt!

      So the next step was supposed to be an anti pd-1 trial.  Curetech rejected me because I'm not Stage IV. I am Stage IIIc unresectable.  As we know, maybe that rejection was a good thing.  So, NOW, Dr. W's planning on Ipi reinduction (starting the approval process tomorrow.)  

      If I do not respond to Ipi, ta da, here's the news:  BMS has changed its _____(i forgot the word he used) and in ABOUT 2 months, he expects BMS's PD-1-only, without prior Ipi exclusions, trial to open.  He had no news about Merck, except they're going through issues (not medical, more like funding, internal stuff, etc.)   I asked him which drug is better, and he said he thinks they are both good and has heard positive results from both.  Regarding prior ipi use for BMS, there will be a narrow window, so he thinks our timing might be good.  I don't really know what that window will be, but we need to all stay tuned. 

      LSorry this is so long; I hope it can be of some help to us.

      All the best,

      karen

    Viewing 8 reply threads
    • Replies
        • February 17, 2012 at 2:17 am
        LynnLuc
        Participant
          • February 17, 2012 at 2:17 am
          LynnLuc
          Participant
              • February 17, 2012 at 1:23 pm
              NYKaren
              Participant
                Ah, Lynn, so funny you should ask that. Because my primary recurrence was punch biopsies ( after the area was irradiated, then frozen, then aldera-ed,) there is question as to whether it’s measurable, i.e a centimeter or larger, which is meaaurable disease The many satellites have not reached 1c because of the freezing. This is exactly what I DIDN’T want to happen with respect to PD-1, but when I stop the freezing/aldera, we will see how big everything gets. My face is so red and irritated now that we’ll have to wait a week or three; ipi causes inflammation, and I would have a skin-poisoned face if I begin it immediately. So we wait. We’ll also see what my scans show once I’m G-d willing approved for reinduction. Aren’t you glad you asked? Thanks so much. Be well, karen
                • February 17, 2012 at 1:23 pm
                NYKaren
                Participant
                  Ah, Lynn, so funny you should ask that. Because my primary recurrence was punch biopsies ( after the area was irradiated, then frozen, then aldera-ed,) there is question as to whether it’s measurable, i.e a centimeter or larger, which is meaaurable disease The many satellites have not reached 1c because of the freezing. This is exactly what I DIDN’T want to happen with respect to PD-1, but when I stop the freezing/aldera, we will see how big everything gets. My face is so red and irritated now that we’ll have to wait a week or three; ipi causes inflammation, and I would have a skin-poisoned face if I begin it immediately. So we wait. We’ll also see what my scans show once I’m G-d willing approved for reinduction. Aren’t you glad you asked? Thanks so much. Be well, karen
                  • February 17, 2012 at 1:23 pm
                  NYKaren
                  Participant
                    Ah, Lynn, so funny you should ask that. Because my primary recurrence was punch biopsies ( after the area was irradiated, then frozen, then aldera-ed,) there is question as to whether it’s measurable, i.e a centimeter or larger, which is meaaurable disease The many satellites have not reached 1c because of the freezing. This is exactly what I DIDN’T want to happen with respect to PD-1, but when I stop the freezing/aldera, we will see how big everything gets. My face is so red and irritated now that we’ll have to wait a week or three; ipi causes inflammation, and I would have a skin-poisoned face if I begin it immediately. So we wait. We’ll also see what my scans show once I’m G-d willing approved for reinduction. Aren’t you glad you asked? Thanks so much. Be well, karen
                  • February 17, 2012 at 2:17 am
                  LynnLuc
                  Participant
                    • February 18, 2012 at 4:40 am
                    FormerCaregiver
                    Participant

                      Karen, thanks for the update. It is encouraging that the Aldera cream is managing to
                      control the spread of the mets. Sorry to read about the pain that you are experiencing,
                      but taking Oxy is usually very effective in the short-term.

                      I wonder if your oncologist thinks that PV-10 would be worth considering? Here is some
                      info on a PV-10 (Rose Bengal) trial:
                      http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                      Take care

                      Frank from Australia

                      • February 18, 2012 at 4:40 am
                      FormerCaregiver
                      Participant

                        Karen, thanks for the update. It is encouraging that the Aldera cream is managing to
                        control the spread of the mets. Sorry to read about the pain that you are experiencing,
                        but taking Oxy is usually very effective in the short-term.

                        I wonder if your oncologist thinks that PV-10 would be worth considering? Here is some
                        info on a PV-10 (Rose Bengal) trial:
                        http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                        Take care

                        Frank from Australia

                          • February 18, 2012 at 9:16 pm
                          Vermont_Donna
                          Participant

                            Hi Karen,

                            Thanks for the update. I am so sorry that you are in so much pain. That sucks!!!! I think you are really knowledgeable about where things are at and what options you have and thank you so much for sharing this!!!! I wish you success and soon!

                            Hugs,

                            Vermont_Donna, stage 3a, NED

                            • February 19, 2012 at 12:46 am
                            NYKaren
                            Participant
                              Thanks to you both. Frank, I will check. Donna, I’m glad you’re doing well. Hugs to you too!
                              karen
                              • February 19, 2012 at 12:46 am
                              NYKaren
                              Participant
                                Thanks to you both. Frank, I will check. Donna, I’m glad you’re doing well. Hugs to you too!
                                karen
                                • February 19, 2012 at 12:46 am
                                NYKaren
                                Participant
                                  Thanks to you both. Frank, I will check. Donna, I’m glad you’re doing well. Hugs to you too!
                                  karen
                                  • February 18, 2012 at 9:16 pm
                                  Vermont_Donna
                                  Participant

                                    Hi Karen,

                                    Thanks for the update. I am so sorry that you are in so much pain. That sucks!!!! I think you are really knowledgeable about where things are at and what options you have and thank you so much for sharing this!!!! I wish you success and soon!

                                    Hugs,

                                    Vermont_Donna, stage 3a, NED

                                    • February 18, 2012 at 9:16 pm
                                    Vermont_Donna
                                    Participant

                                      Hi Karen,

                                      Thanks for the update. I am so sorry that you are in so much pain. That sucks!!!! I think you are really knowledgeable about where things are at and what options you have and thank you so much for sharing this!!!! I wish you success and soon!

                                      Hugs,

                                      Vermont_Donna, stage 3a, NED

                                    • February 18, 2012 at 4:40 am
                                    FormerCaregiver
                                    Participant

                                      Karen, thanks for the update. It is encouraging that the Aldera cream is managing to
                                      control the spread of the mets. Sorry to read about the pain that you are experiencing,
                                      but taking Oxy is usually very effective in the short-term.

                                      I wonder if your oncologist thinks that PV-10 would be worth considering? Here is some
                                      info on a PV-10 (Rose Bengal) trial:
                                      http://www.clinicaltrials.gov/ct2/show/NCT01260779?term=PV-10+melanoma&rank=3

                                      Take care

                                      Frank from Australia

                                      • February 19, 2012 at 11:54 pm
                                      aldakota22
                                      Participant

                                        Karen remember we NYers are a tough bunch.You will kick ass on this next round of treatment.All the best and prayers.Al

                                        • February 19, 2012 at 11:54 pm
                                        aldakota22
                                        Participant

                                          Karen remember we NYers are a tough bunch.You will kick ass on this next round of treatment.All the best and prayers.Al

                                            • February 20, 2012 at 1:16 am
                                            NYKaren
                                            Participant
                                              We sure are Al. I’ll think of you when I’m on the E-train to Sloan (the 53rd St. location.) thanks for your kind wishes.
                                              Take care,
                                              karen
                                              • February 20, 2012 at 1:16 am
                                              NYKaren
                                              Participant
                                                We sure are Al. I’ll think of you when I’m on the E-train to Sloan (the 53rd St. location.) thanks for your kind wishes.
                                                Take care,
                                                karen
                                                • February 20, 2012 at 1:16 am
                                                NYKaren
                                                Participant
                                                  We sure are Al. I’ll think of you when I’m on the E-train to Sloan (the 53rd St. location.) thanks for your kind wishes.
                                                  Take care,
                                                  karen
                                                • February 19, 2012 at 11:54 pm
                                                aldakota22
                                                Participant

                                                  Karen remember we NYers are a tough bunch.You will kick ass on this next round of treatment.All the best and prayers.Al

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