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Searching for nonrandomized anti PD-1 trial

Forums General Melanoma Community Searching for nonrandomized anti PD-1 trial

  • Post
    VSlim
    Participant

      Hi all, This is my first posting on the site. My husband was diagnosed two years ago (unknown origin, it showed up in the lymph nodes in his neck). He has been treated at Sloan Kettering with surgery, radiation, and most recently ipilimumab but the disease is still spreading. His doctor at Sloan is recommending their clinical trial of Bristol Myers' anti PD-1 (nivolumab) but it's randomized v. chemo. I've been searching for a nonrandomized trial of the Merck anti PD-1 in our area (New York) but so far no success.

      Hi all, This is my first posting on the site. My husband was diagnosed two years ago (unknown origin, it showed up in the lymph nodes in his neck). He has been treated at Sloan Kettering with surgery, radiation, and most recently ipilimumab but the disease is still spreading. His doctor at Sloan is recommending their clinical trial of Bristol Myers' anti PD-1 (nivolumab) but it's randomized v. chemo. I've been searching for a nonrandomized trial of the Merck anti PD-1 in our area (New York) but so far no success. The clinicaltrials.gov site has twice given me hope–only to find that the trials are no longer enrolling. If anyone knows of a trial in our area, I'd very much appreciate knowing about it.

    Viewing 13 reply threads
    • Replies
        Bubbles
        Participant

          You might try this site:  http://www.bms.com/studyconnect/Pages/P … &zip=19343

          BMS HAD (not sure if there are still places and enrollment available) some anti-PD1 studies that were NOT radomized to chemo.  Maybe this site can help.  Also, if a study IS randomized to chemo, it might still be something to consider IF they allow cross-over to anti-PD1 with progression on chemo. 

          Wishing you and your husband my best. C

          Bubbles
          Participant

            You might try this site:  http://www.bms.com/studyconnect/Pages/P … &zip=19343

            BMS HAD (not sure if there are still places and enrollment available) some anti-PD1 studies that were NOT radomized to chemo.  Maybe this site can help.  Also, if a study IS randomized to chemo, it might still be something to consider IF they allow cross-over to anti-PD1 with progression on chemo. 

            Wishing you and your husband my best. C

            Bubbles
            Participant

              You might try this site:  http://www.bms.com/studyconnect/Pages/P … &zip=19343

              BMS HAD (not sure if there are still places and enrollment available) some anti-PD1 studies that were NOT radomized to chemo.  Maybe this site can help.  Also, if a study IS randomized to chemo, it might still be something to consider IF they allow cross-over to anti-PD1 with progression on chemo. 

              Wishing you and your husband my best. C

              Erinmay22
              Participant

                sounds like you'll have to find a phase 1 trial.  I am in Merck's phase 1 trial of anti-pd1 at Sloan.  Started it in Jan.  I know they added a bunch of seats but sounds like they may all be full already.  My trial was randomized for low vs high dose.

                The other trials that randomize against chemo, I believe you have a 2/3's chance of getting the anti-pd1 drug.  Is there a cross over if you advance?

                I finished ipi Dec 2012 and showed growth.  When they scanned me 4+ weeks later to get in the anti-pd1 trial I had started to respond to ipi.  Just finished dose #10 of pd1…  

                Best of luck!  I know that Yale had pd1 trials but that was back in Nov/Dec.  It may be hard to find a phase 1 trial still open…  

                Erin

                Erinmay22
                Participant

                  sounds like you'll have to find a phase 1 trial.  I am in Merck's phase 1 trial of anti-pd1 at Sloan.  Started it in Jan.  I know they added a bunch of seats but sounds like they may all be full already.  My trial was randomized for low vs high dose.

                  The other trials that randomize against chemo, I believe you have a 2/3's chance of getting the anti-pd1 drug.  Is there a cross over if you advance?

                  I finished ipi Dec 2012 and showed growth.  When they scanned me 4+ weeks later to get in the anti-pd1 trial I had started to respond to ipi.  Just finished dose #10 of pd1…  

                  Best of luck!  I know that Yale had pd1 trials but that was back in Nov/Dec.  It may be hard to find a phase 1 trial still open…  

                  Erin

                  Erinmay22
                  Participant

                    sounds like you'll have to find a phase 1 trial.  I am in Merck's phase 1 trial of anti-pd1 at Sloan.  Started it in Jan.  I know they added a bunch of seats but sounds like they may all be full already.  My trial was randomized for low vs high dose.

                    The other trials that randomize against chemo, I believe you have a 2/3's chance of getting the anti-pd1 drug.  Is there a cross over if you advance?

                    I finished ipi Dec 2012 and showed growth.  When they scanned me 4+ weeks later to get in the anti-pd1 trial I had started to respond to ipi.  Just finished dose #10 of pd1…  

                    Best of luck!  I know that Yale had pd1 trials but that was back in Nov/Dec.  It may be hard to find a phase 1 trial still open…  

                    Erin

                    NYKaren
                    Participant
                      Hi, I was about to start the same Sloan phase 1 trial that Erin is on when it was cancelled. My onc recommended the phase II at another center that is randomized to chemo, and that’s what I hope to be starting soon. Yes, they do randomize, but at least the the chemo arm is there.
                      Karen
                      VSlim
                      Participant

                        Thanks for all the replies. I'll be getting on the phone again tomorrow, will start with the medical centers you folks pointed me to. I spoke with our research nurse at Sloan this morning and found that (as Karen says) the phase 1 trial is no longer an option and the Merck trial is no longer enrolling. I'm going to try to see if I can find another site still enrolling for one of those. In the trial our onc is recommending, there's no option for switching over. My husband's six-week CT after the ipi showed things still in flux–some growths larger, some smaller–so we waited another six weeks, and that scan showed more and larger growths in soft tissue plus larger ones in his lungs and a new one on a kidney. The BMS site is so helpful; I wish Merck's was, too. Tried phoning them for info and they pointed me back to their website, which tells you virtually nothing. Does anyone know if any other pharma cos. (besides BMS and Merck) are developing anti PD-1 drugs for melanoma?

                        VSlim
                        Participant

                          Thanks for all the replies. I'll be getting on the phone again tomorrow, will start with the medical centers you folks pointed me to. I spoke with our research nurse at Sloan this morning and found that (as Karen says) the phase 1 trial is no longer an option and the Merck trial is no longer enrolling. I'm going to try to see if I can find another site still enrolling for one of those. In the trial our onc is recommending, there's no option for switching over. My husband's six-week CT after the ipi showed things still in flux–some growths larger, some smaller–so we waited another six weeks, and that scan showed more and larger growths in soft tissue plus larger ones in his lungs and a new one on a kidney. The BMS site is so helpful; I wish Merck's was, too. Tried phoning them for info and they pointed me back to their website, which tells you virtually nothing. Does anyone know if any other pharma cos. (besides BMS and Merck) are developing anti PD-1 drugs for melanoma?

                          VSlim
                          Participant

                            Thanks for all the replies. I'll be getting on the phone again tomorrow, will start with the medical centers you folks pointed me to. I spoke with our research nurse at Sloan this morning and found that (as Karen says) the phase 1 trial is no longer an option and the Merck trial is no longer enrolling. I'm going to try to see if I can find another site still enrolling for one of those. In the trial our onc is recommending, there's no option for switching over. My husband's six-week CT after the ipi showed things still in flux–some growths larger, some smaller–so we waited another six weeks, and that scan showed more and larger growths in soft tissue plus larger ones in his lungs and a new one on a kidney. The BMS site is so helpful; I wish Merck's was, too. Tried phoning them for info and they pointed me back to their website, which tells you virtually nothing. Does anyone know if any other pharma cos. (besides BMS and Merck) are developing anti PD-1 drugs for melanoma?

                            VSlim
                            Participant

                              I'm happy for you that you were able to get into the Merck PD 1 trial. I talked to a research nurse at NYU and was told that they're no longer enrolling for the nonrandomized phase 1 trial, only for the phase 2 trial randomized vs. chemotherapy.  The only advantage that offers us over the Sloan BMS trial is that the Merck trial has the possibility of crossover if you show results on the chemo. Still, it's an advantage and if my husband ends up in the chemo arm at Sloan and I haven't found anything else, we would probably opt out and try for the NYU trial instead. In the meantime I'm still phoning around, trying to find a nonrandomized trial.

                              Good luck to you!

                              Virginia

                              NYKaren
                              Participant
                                Hi, I was about to start the same Sloan phase 1 trial that Erin is on when it was cancelled. My onc recommended the phase II at another center that is randomized to chemo, and that’s what I hope to be starting soon. Yes, they do randomize, but at least the the chemo arm is there.
                                Karen
                                NYKaren
                                Participant
                                  Hi, I was about to start the same Sloan phase 1 trial that Erin is on when it was cancelled. My onc recommended the phase II at another center that is randomized to chemo, and that’s what I hope to be starting soon. Yes, they do randomize, but at least the the chemo arm is there.
                                  Karen
                                  VSlim
                                  Participant

                                    Thanks for all the replies. I'll be getting on the phone again tomorrow, will start with the medical centers you folks pointed me to. I spoke with our research nurse at Sloan this morning and found that (as Karen says) the phase 1 trial is no longer an option and the Merck trial is no longer enrolling. I'm going to try to see if I can find another site still enrolling for one of those. In the trial our onc is recommending, there's no option for switching over. My husband's six-week CT after the ipi showed things still in flux–some growths larger, some smaller–so we waited another six weeks, and that scan showed more and larger growths in soft tissue plus larger ones in his lungs and a new one on a kidney. The BMS site is so helpful; I wish Merck's was, too. Tried phoning them for info and they pointed me back to their website, which tells you virtually nothing. Does anyone know if any other pharma cos. (besides BMS and Merck) are developing anti PD-1 drugs for melanoma?

                                    VSlim
                                    Participant

                                      Thanks for all the replies. I'll be getting on the phone again tomorrow, will start with the medical centers you folks pointed me to. I spoke with our research nurse at Sloan this morning and found that (as Karen says) the phase 1 trial is no longer an option and the Merck trial is no longer enrolling. I'm going to try to see if I can find another site still enrolling for one of those. In the trial our onc is recommending, there's no option for switching over. My husband's six-week CT after the ipi showed things still in flux–some growths larger, some smaller–so we waited another six weeks, and that scan showed more and larger growths in soft tissue plus larger ones in his lungs and a new one on a kidney. The BMS site is so helpful; I wish Merck's was, too. Tried phoning them for info and they pointed me back to their website, which tells you virtually nothing. Does anyone know if any other pharma cos. (besides BMS and Merck) are developing anti PD-1 drugs for melanoma?

                                      VSlim
                                      Participant

                                        Thanks for all the replies. I'll be getting on the phone again tomorrow, will start with the medical centers you folks pointed me to. I spoke with our research nurse at Sloan this morning and found that (as Karen says) the phase 1 trial is no longer an option and the Merck trial is no longer enrolling. I'm going to try to see if I can find another site still enrolling for one of those. In the trial our onc is recommending, there's no option for switching over. My husband's six-week CT after the ipi showed things still in flux–some growths larger, some smaller–so we waited another six weeks, and that scan showed more and larger growths in soft tissue plus larger ones in his lungs and a new one on a kidney. The BMS site is so helpful; I wish Merck's was, too. Tried phoning them for info and they pointed me back to their website, which tells you virtually nothing. Does anyone know if any other pharma cos. (besides BMS and Merck) are developing anti PD-1 drugs for melanoma?

                                        VSlim
                                        Participant

                                          Thanks for all the replies. I'll be getting on the phone again tomorrow, will start with the medical centers you folks pointed me to. I spoke with our research nurse at Sloan this morning and found that (as Karen says) the phase 1 trial is no longer an option and the Merck trial is no longer enrolling. I'm going to try to see if I can find another site still enrolling for one of those. In the trial our onc is recommending, there's no option for switching over. My husband's six-week CT after the ipi showed things still in flux–some growths larger, some smaller–so we waited another six weeks, and that scan showed more and larger growths in soft tissue plus larger ones in his lungs and a new one on a kidney. The BMS site is so helpful; I wish Merck's was, too. Tried phoning them for info and they pointed me back to their website, which tells you virtually nothing. Does anyone know if any other pharma cos. (besides BMS and Merck) are developing anti PD-1 drugs for melanoma?

                                          VSlim
                                          Participant

                                            Thanks for all the replies. I'll be getting on the phone again tomorrow, will start with the medical centers you folks pointed me to. I spoke with our research nurse at Sloan this morning and found that (as Karen says) the phase 1 trial is no longer an option and the Merck trial is no longer enrolling. I'm going to try to see if I can find another site still enrolling for one of those. In the trial our onc is recommending, there's no option for switching over. My husband's six-week CT after the ipi showed things still in flux–some growths larger, some smaller–so we waited another six weeks, and that scan showed more and larger growths in soft tissue plus larger ones in his lungs and a new one on a kidney. The BMS site is so helpful; I wish Merck's was, too. Tried phoning them for info and they pointed me back to their website, which tells you virtually nothing. Does anyone know if any other pharma cos. (besides BMS and Merck) are developing anti PD-1 drugs for melanoma?

                                            VSlim
                                            Participant

                                              Thanks for all the replies. I'll be getting on the phone again tomorrow, will start with the medical centers you folks pointed me to. I spoke with our research nurse at Sloan this morning and found that (as Karen says) the phase 1 trial is no longer an option and the Merck trial is no longer enrolling. I'm going to try to see if I can find another site still enrolling for one of those. In the trial our onc is recommending, there's no option for switching over. My husband's six-week CT after the ipi showed things still in flux–some growths larger, some smaller–so we waited another six weeks, and that scan showed more and larger growths in soft tissue plus larger ones in his lungs and a new one on a kidney. The BMS site is so helpful; I wish Merck's was, too. Tried phoning them for info and they pointed me back to their website, which tells you virtually nothing. Does anyone know if any other pharma cos. (besides BMS and Merck) are developing anti PD-1 drugs for melanoma?

                                              NYKaren
                                              Participant

                                                Hi again,

                                                FYI, I am a very big fan of Dr. Wolchuk and  his team at Sloan.  However, when he recommended Dr. Anna Pavlick at NYU, for the Merck Anti PD1 Phase II trial, I have been very happy with Dr. Pavlick.   She's terrific,  easy to reach, the Gamma Knife team at NYU has really been top notch…no complaints and only good things to say.

                                                Hope this helps,

                                                Karen

                                                NYKaren
                                                Participant

                                                  Hi again,

                                                  FYI, I am a very big fan of Dr. Wolchuk and  his team at Sloan.  However, when he recommended Dr. Anna Pavlick at NYU, for the Merck Anti PD1 Phase II trial, I have been very happy with Dr. Pavlick.   She's terrific,  easy to reach, the Gamma Knife team at NYU has really been top notch…no complaints and only good things to say.

                                                  Hope this helps,

                                                  Karen

                                                  NYKaren
                                                  Participant

                                                    Hi again,

                                                    FYI, I am a very big fan of Dr. Wolchuk and  his team at Sloan.  However, when he recommended Dr. Anna Pavlick at NYU, for the Merck Anti PD1 Phase II trial, I have been very happy with Dr. Pavlick.   She's terrific,  easy to reach, the Gamma Knife team at NYU has really been top notch…no complaints and only good things to say.

                                                    Hope this helps,

                                                    Karen

                                                    VSlim
                                                    Participant

                                                      I'm happy for you that you were able to get into the Merck PD 1 trial. I talked to a research nurse at NYU and was told that they're no longer enrolling for the nonrandomized phase 1 trial, only for the phase 2 trial randomized vs. chemotherapy.  The only advantage that offers us over the Sloan BMS trial is that the Merck trial has the possibility of crossover if you show results on the chemo. Still, it's an advantage and if my husband ends up in the chemo arm at Sloan and I haven't found anything else, we would probably opt out and try for the NYU trial instead. In the meantime I'm still phoning around, trying to find a nonrandomized trial.

                                                      Good luck to you!

                                                      Virginia

                                                      VSlim
                                                      Participant

                                                        I'm happy for you that you were able to get into the Merck PD 1 trial. I talked to a research nurse at NYU and was told that they're no longer enrolling for the nonrandomized phase 1 trial, only for the phase 2 trial randomized vs. chemotherapy.  The only advantage that offers us over the Sloan BMS trial is that the Merck trial has the possibility of crossover if you show results on the chemo. Still, it's an advantage and if my husband ends up in the chemo arm at Sloan and I haven't found anything else, we would probably opt out and try for the NYU trial instead. In the meantime I'm still phoning around, trying to find a nonrandomized trial.

                                                        Good luck to you!

                                                        Virginia

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