› Forums › General Melanoma Community › Searching for nonrandomized anti PD-1 trial
- This topic has 27 replies, 5 voices, and was last updated 10 years, 9 months ago by VSlim.
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- August 6, 2013 at 2:40 pm
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.
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- August 6, 2013 at 3:49 pm
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
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- August 6, 2013 at 3:49 pm
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
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- August 6, 2013 at 3:49 pm
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
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- August 6, 2013 at 4:43 pm
This link might help too:
http://clinicaltrials.gov/ct2/show/NCT01621490?term=BMS+Pd1&rank=1
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- August 6, 2013 at 4:43 pm
This link might help too:
http://clinicaltrials.gov/ct2/show/NCT01621490?term=BMS+Pd1&rank=1
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- August 6, 2013 at 4:43 pm
This link might help too:
http://clinicaltrials.gov/ct2/show/NCT01621490?term=BMS+Pd1&rank=1
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- August 6, 2013 at 8:19 pm
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
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- August 6, 2013 at 8:19 pm
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
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- August 6, 2013 at 8:19 pm
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
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- August 6, 2013 at 11:42 pm
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 -
- August 7, 2013 at 2:26 am
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?
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- August 7, 2013 at 2:27 am
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?
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- August 7, 2013 at 2:28 am
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?
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- August 7, 2013 at 9:42 pm
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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- August 6, 2013 at 11:42 pm
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 -
- August 6, 2013 at 11:42 pm
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 -
- August 7, 2013 at 2:26 am
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?
-
- August 7, 2013 at 2:26 am
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?
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- August 7, 2013 at 2:27 am
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?
-
- August 7, 2013 at 2:27 am
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?
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- August 7, 2013 at 2:28 am
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?
-
- August 7, 2013 at 2:28 am
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?
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- August 7, 2013 at 8:29 pm
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
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- August 7, 2013 at 8:29 pm
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
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- August 7, 2013 at 8:29 pm
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
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- August 7, 2013 at 9:42 pm
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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- August 7, 2013 at 9:42 pm
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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