Questions about anti-PDL-1 & anti-PD1/anyone taken these drug?

› Forums › General Melanoma Community › Questions about anti-PDL-1 & anti-PD1/anyone taken these drug?

  • Post
    • October 21, 2011 at 10:21 pm
    killmel
    Participant

      Hi,

      I am a newbiew to this site. I am stage 4 & waiting for an anti-pd1 trial or anti-pdl-1 trial to open. I have not done yervoy so this ismy first immunology treatment.

      There are a few manufacturers (Curetech,Genetech, BMS & Merck) all coming out with anti-pd1 oranti-pdl-1 trials by the end ofthe year.

      Hi,

      I am a newbiew to this site. I am stage 4 & waiting for an anti-pd1 trial or anti-pdl-1 trial to open. I have not done yervoy so this ismy first immunology treatment.

      There are a few manufacturers (Curetech,Genetech, BMS & Merck) all coming out with anti-pd1 oranti-pdl-1 trials by the end ofthe year.

      Does it matter who the manufacturer of the PD1 drug is? Will Curetech PD1 drug be as good as Merck PD1 drug  or BMS anti- pdl-1 drug. I guess what I am asking you, are all anti-pdl-1 &anti-pd1 drug equal and it does not matter who the manufacturer of the drug is?

      Also, how does the pdl-1 &pd1 drug work? Does it work like IPI and does it take weeks for PD1 drug to work? Will there be tumor shrinkage soon after starting drug?

      Do ALC go up if you are a responder to pdl-1 &pd1?

      What are the signs that indicate you are a responder besides tumor shrinkage?

      What are the side effects of pdl-1 & pd1? On one of the trial consent form that was given to me, it stated a side effect could be a lowing of white blood cells. That is very differenct than Yervoy where the ALC goes  up.

      Any information about anti-pd1 (pdl-1) would be extremely helpful so that I know what to expect.

      Thanks  so much

       

    Viewing 8 reply threads
    • Replies
        • October 22, 2011 at 3:10 am
        Bubbles
        Participant

          To answer your questions:  Diff between manufacturer's = unknown.  Anti-PD1 works by taking brakes off the immune system (melanoma is very sneaky and creates its own path around our normally resistent mechanisms) much like ipi (now yervoy), but may be more focused with fewer side effects.  ALC = with Anti-PD1 that result is variable and not that important.  Side effects….well….I am in an anti-PD1 combined vaccine trial in Tampa at Moffitt.  My blog:  chaoticallypreciselifeloveandmelanoma@blogspot.com covers my experiences…which in the side effect department have been: arthralgias, itching, some fatigue, and vitiligo.  For others the fatigue has been much more difficult with some losing thyroid function and others even experiencing swelling of the optic nerve.  Hope this helps.  Wishing you the best…Celeste

          • October 22, 2011 at 3:10 am
          Bubbles
          Participant

            To answer your questions:  Diff between manufacturer's = unknown.  Anti-PD1 works by taking brakes off the immune system (melanoma is very sneaky and creates its own path around our normally resistent mechanisms) much like ipi (now yervoy), but may be more focused with fewer side effects.  ALC = with Anti-PD1 that result is variable and not that important.  Side effects….well….I am in an anti-PD1 combined vaccine trial in Tampa at Moffitt.  My blog:  chaoticallypreciselifeloveandmelanoma@blogspot.com covers my experiences…which in the side effect department have been: arthralgias, itching, some fatigue, and vitiligo.  For others the fatigue has been much more difficult with some losing thyroid function and others even experiencing swelling of the optic nerve.  Hope this helps.  Wishing you the best…Celeste

            • October 22, 2011 at 3:10 am
            Bubbles
            Participant

              To answer your questions:  Diff between manufacturer's = unknown.  Anti-PD1 works by taking brakes off the immune system (melanoma is very sneaky and creates its own path around our normally resistent mechanisms) much like ipi (now yervoy), but may be more focused with fewer side effects.  ALC = with Anti-PD1 that result is variable and not that important.  Side effects….well….I am in an anti-PD1 combined vaccine trial in Tampa at Moffitt.  My blog:  chaoticallypreciselifeloveandmelanoma@blogspot.com covers my experiences…which in the side effect department have been: arthralgias, itching, some fatigue, and vitiligo.  For others the fatigue has been much more difficult with some losing thyroid function and others even experiencing swelling of the optic nerve.  Hope this helps.  Wishing you the best…Celeste

              • October 22, 2011 at 8:05 am
              LynnLuc
              Participant

                I am in an Anti PD 1 trial (MDX 1106) at Moffitt and after twelve 12 week cycles I am on the booster phase , doing just the anti PD 1 every 3 months via IV. I also get my scans and blood work every 3 months. I will do the booster for 2 years at least as long as there is no relapse and perhaps longer because DR Weber says if I remain NED  we might want to consider consider continuing it …They still have openings…but here is a link to other Anti PD 1 trials from cancer.gov

                http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=9710168

                  • October 22, 2011 at 8:06 am
                  LynnLuc
                  Participant

                    it should say after two twelve week cycles…

                    • October 22, 2011 at 8:06 am
                    LynnLuc
                    Participant

                      it should say after two twelve week cycles…

                      • October 22, 2011 at 8:06 am
                      LynnLuc
                      Participant

                        it should say after two twelve week cycles…

                      • October 22, 2011 at 8:05 am
                      LynnLuc
                      Participant

                        I am in an Anti PD 1 trial (MDX 1106) at Moffitt and after twelve 12 week cycles I am on the booster phase , doing just the anti PD 1 every 3 months via IV. I also get my scans and blood work every 3 months. I will do the booster for 2 years at least as long as there is no relapse and perhaps longer because DR Weber says if I remain NED  we might want to consider consider continuing it …They still have openings…but here is a link to other Anti PD 1 trials from cancer.gov

                        http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=9710168

                        • October 22, 2011 at 8:05 am
                        LynnLuc
                        Participant

                          I am in an Anti PD 1 trial (MDX 1106) at Moffitt and after twelve 12 week cycles I am on the booster phase , doing just the anti PD 1 every 3 months via IV. I also get my scans and blood work every 3 months. I will do the booster for 2 years at least as long as there is no relapse and perhaps longer because DR Weber says if I remain NED  we might want to consider consider continuing it …They still have openings…but here is a link to other Anti PD 1 trials from cancer.gov

                          http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=9710168

                          • October 23, 2011 at 12:45 am
                          NYKaren
                          Participant

                            I don't usually post anonymously, but just in case doctors visit this site…

                             

                            I've had two doctors say to me that they prefer Curetech.  Why? I have no idea, and I don't know why I didn't think to ask at the time, but I will definately ask next time I see one of them.  I don't THINK either is involved with one of Curetech's trials, but ya never know.

                              • October 23, 2011 at 7:41 pm
                              killmel
                              Participant

                                Hi Anonymous

                                 

                                Are you on the PD1trial & will you share your experience.

                                 

                                Thanks

                                • October 23, 2011 at 7:41 pm
                                killmel
                                Participant

                                  Hi Anonymous

                                   

                                  Are you on the PD1trial & will you share your experience.

                                   

                                  Thanks

                                  • October 23, 2011 at 7:41 pm
                                  killmel
                                  Participant

                                    Hi Anonymous

                                     

                                    Are you on the PD1trial & will you share your experience.

                                     

                                    Thanks

                                  • October 23, 2011 at 12:45 am
                                  NYKaren
                                  Participant

                                    I don't usually post anonymously, but just in case doctors visit this site…

                                     

                                    I've had two doctors say to me that they prefer Curetech.  Why? I have no idea, and I don't know why I didn't think to ask at the time, but I will definately ask next time I see one of them.  I don't THINK either is involved with one of Curetech's trials, but ya never know.

                                    • October 23, 2011 at 12:45 am
                                    NYKaren
                                    Participant

                                      I don't usually post anonymously, but just in case doctors visit this site…

                                       

                                      I've had two doctors say to me that they prefer Curetech.  Why? I have no idea, and I don't know why I didn't think to ask at the time, but I will definately ask next time I see one of them.  I don't THINK either is involved with one of Curetech's trials, but ya never know.

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