› Forums › General Melanoma Community › Merck Anti-pd1 Update
- This topic has 51 replies, 12 voices, and was last updated 10 years, 2 months ago by
ReginaTink.
- Post
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- August 31, 2012 at 10:15 pm
Just got results from my 24 week pet/ct scans. Continued shrinkage! Lung tomors are down about 60% from where I started, axillary lymph node is about 50%, and they couldnt find any activity in my 2 previously noted rib mets!!!!! Dr. said I had best results so far of 7 on the trial and although he didnt test for it, he's sure my tumors expressed the pd ligand. Everyday I read about warriors beating the odds and of ever increasing new research and findings. I have faith that soon, melanoma will be history. Keep the faith qnd God Bless. Robert
Just got results from my 24 week pet/ct scans. Continued shrinkage! Lung tomors are down about 60% from where I started, axillary lymph node is about 50%, and they couldnt find any activity in my 2 previously noted rib mets!!!!! Dr. said I had best results so far of 7 on the trial and although he didnt test for it, he's sure my tumors expressed the pd ligand. Everyday I read about warriors beating the odds and of ever increasing new research and findings. I have faith that soon, melanoma will be history. Keep the faith qnd God Bless. Robert
- Replies
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- August 31, 2012 at 10:43 pm
Praying that for you and everyone else that melanoma will shortly be history.Keep those tumors shrinking.Beat the Beast. Al
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- August 31, 2012 at 10:43 pm
Praying that for you and everyone else that melanoma will shortly be history.Keep those tumors shrinking.Beat the Beast. Al
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- August 31, 2012 at 10:43 pm
Praying that for you and everyone else that melanoma will shortly be history.Keep those tumors shrinking.Beat the Beast. Al
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- September 1, 2012 at 1:22 am
Congratulations! Praying that your good health continues…forever! Thanks for posting such wonderful news!
Tricia
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- September 1, 2012 at 1:02 pm
Robert, I am super happy for you, I have followed your story since you did biochemo, because I knew we were headed in that direction. What great news on your shrinkage, keep up the good work. We can only hope more melanoma patients get into anti PD1 trials, it seems so promising. Have a wonderful relaxing long weekend, enjoying your great news. Take care! Valerie (Phil’s wife) -
- September 1, 2012 at 1:02 pm
Robert, I am super happy for you, I have followed your story since you did biochemo, because I knew we were headed in that direction. What great news on your shrinkage, keep up the good work. We can only hope more melanoma patients get into anti PD1 trials, it seems so promising. Have a wonderful relaxing long weekend, enjoying your great news. Take care! Valerie (Phil’s wife) -
- September 1, 2012 at 1:02 pm
Robert, I am super happy for you, I have followed your story since you did biochemo, because I knew we were headed in that direction. What great news on your shrinkage, keep up the good work. We can only hope more melanoma patients get into anti PD1 trials, it seems so promising. Have a wonderful relaxing long weekend, enjoying your great news. Take care! Valerie (Phil’s wife)
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- September 1, 2012 at 11:32 pm
Hi Robert,
I am new to the Board and very excited to see your post.
I too am on the Merck PD1 trial out in Texas. I have been on the trial a little over 36 weeks now and just became NED. I know that you too will become NED with your next set of 12 week scans.
Before I saw your post, I did post a question for the members about required scans.
I would appreciate you sharing what scans you have every12 weeks. These are my scans: MRI Brain, CT Neck, Ct Chest, CT Abdomen & Pelvis, plus lower extremties because in the past, I had tumors in my leg.
This is the first time with this trial that I ever had a CT Neck. Do you have a CT Neck scan??? Is this scan required?
Robert, God Bless you and wishing you NED status. I will be praying for you.
Marybelle
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- September 1, 2012 at 11:32 pm
Hi Robert,
I am new to the Board and very excited to see your post.
I too am on the Merck PD1 trial out in Texas. I have been on the trial a little over 36 weeks now and just became NED. I know that you too will become NED with your next set of 12 week scans.
Before I saw your post, I did post a question for the members about required scans.
I would appreciate you sharing what scans you have every12 weeks. These are my scans: MRI Brain, CT Neck, Ct Chest, CT Abdomen & Pelvis, plus lower extremties because in the past, I had tumors in my leg.
This is the first time with this trial that I ever had a CT Neck. Do you have a CT Neck scan??? Is this scan required?
Robert, God Bless you and wishing you NED status. I will be praying for you.
Marybelle
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- September 1, 2012 at 11:32 pm
Hi Robert,
I am new to the Board and very excited to see your post.
I too am on the Merck PD1 trial out in Texas. I have been on the trial a little over 36 weeks now and just became NED. I know that you too will become NED with your next set of 12 week scans.
Before I saw your post, I did post a question for the members about required scans.
I would appreciate you sharing what scans you have every12 weeks. These are my scans: MRI Brain, CT Neck, Ct Chest, CT Abdomen & Pelvis, plus lower extremties because in the past, I had tumors in my leg.
This is the first time with this trial that I ever had a CT Neck. Do you have a CT Neck scan??? Is this scan required?
Robert, God Bless you and wishing you NED status. I will be praying for you.
Marybelle
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- September 2, 2012 at 7:25 pm
It's great to read that the Merck version of anti-PD-1 is showing positive results for you and others.. I had similar results 3 1/2 years ago while partipating in the Medarex-BMS phase 1B trial that produced good result for melanoma and two other indications. I remain NED to date. While our results have been great, we remain a very small group: much too small a group because the low priority BMS has given to development of their version in spite of the very positive response from the melanoma community since the publication of initial phase 1b results at ASCO 2010. We need to support one another and work together to make anti-PD-1 available to as many possible melanoma patients as soon as possible either in advanced trials or through compassionate use. We can take advantage of the potential competition to leverage more rapid patient access. We have been given time and the opportunity to act on behalf of those who are less fortunate that we have been. Neither individal patient efforts nor the collaborative efforts of MRF and MIF have moved BMS. Perhaps collective patient activism both alone and in concert with advocacy, research and professional melanoma groups will be more successful. We have to try.
Alan
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- September 2, 2012 at 7:25 pm
It's great to read that the Merck version of anti-PD-1 is showing positive results for you and others.. I had similar results 3 1/2 years ago while partipating in the Medarex-BMS phase 1B trial that produced good result for melanoma and two other indications. I remain NED to date. While our results have been great, we remain a very small group: much too small a group because the low priority BMS has given to development of their version in spite of the very positive response from the melanoma community since the publication of initial phase 1b results at ASCO 2010. We need to support one another and work together to make anti-PD-1 available to as many possible melanoma patients as soon as possible either in advanced trials or through compassionate use. We can take advantage of the potential competition to leverage more rapid patient access. We have been given time and the opportunity to act on behalf of those who are less fortunate that we have been. Neither individal patient efforts nor the collaborative efforts of MRF and MIF have moved BMS. Perhaps collective patient activism both alone and in concert with advocacy, research and professional melanoma groups will be more successful. We have to try.
Alan
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- September 2, 2012 at 11:44 pm
Alan,
I agree completely and will join you in the fight. It pains me ever time I read about someone that has no options but can't get an "investigational drug" that is showing positive results. It may be time to expose the issue to the national press. I believe BMS is slow on this drug because the want to get their investment back first for Yervoy at $140k per cycle, per patient. I remember in the early AIDS days, advocates were able to get people on trials and drugs that had no other options but die a slow death. There are many willing trial participants that sign the waivers and give up all their rights for a chance at prolonging their lives. Please message me privately and we can share contact info and "make it happen".
Robert
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- September 2, 2012 at 11:44 pm
Alan,
I agree completely and will join you in the fight. It pains me ever time I read about someone that has no options but can't get an "investigational drug" that is showing positive results. It may be time to expose the issue to the national press. I believe BMS is slow on this drug because the want to get their investment back first for Yervoy at $140k per cycle, per patient. I remember in the early AIDS days, advocates were able to get people on trials and drugs that had no other options but die a slow death. There are many willing trial participants that sign the waivers and give up all their rights for a chance at prolonging their lives. Please message me privately and we can share contact info and "make it happen".
Robert
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- September 2, 2012 at 11:44 pm
Alan,
I agree completely and will join you in the fight. It pains me ever time I read about someone that has no options but can't get an "investigational drug" that is showing positive results. It may be time to expose the issue to the national press. I believe BMS is slow on this drug because the want to get their investment back first for Yervoy at $140k per cycle, per patient. I remember in the early AIDS days, advocates were able to get people on trials and drugs that had no other options but die a slow death. There are many willing trial participants that sign the waivers and give up all their rights for a chance at prolonging their lives. Please message me privately and we can share contact info and "make it happen".
Robert
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- September 3, 2012 at 12:59 am
I have no way of knowing if BMS is slow-tracking anti-PD1 & would hate to disparage them because they are saving my life. But I did have to be a non-Yervoy responder to get into my trial. When I went on Yervoy, my NCI-certified cancer center wanted the money up front because they were having trouble getting Medicare to pay for it. Needless to say the amount made my jaw drop. I managed to find another center that had no trouble billing Medicare and I got the full treatment but with no help. My tumors are shrinking on anti-PD1 and it pains me that more people are not getting it. Is this really the best way to do medical research?
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- September 3, 2012 at 12:59 am
I have no way of knowing if BMS is slow-tracking anti-PD1 & would hate to disparage them because they are saving my life. But I did have to be a non-Yervoy responder to get into my trial. When I went on Yervoy, my NCI-certified cancer center wanted the money up front because they were having trouble getting Medicare to pay for it. Needless to say the amount made my jaw drop. I managed to find another center that had no trouble billing Medicare and I got the full treatment but with no help. My tumors are shrinking on anti-PD1 and it pains me that more people are not getting it. Is this really the best way to do medical research?
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- September 3, 2012 at 12:59 am
I have no way of knowing if BMS is slow-tracking anti-PD1 & would hate to disparage them because they are saving my life. But I did have to be a non-Yervoy responder to get into my trial. When I went on Yervoy, my NCI-certified cancer center wanted the money up front because they were having trouble getting Medicare to pay for it. Needless to say the amount made my jaw drop. I managed to find another center that had no trouble billing Medicare and I got the full treatment but with no help. My tumors are shrinking on anti-PD1 and it pains me that more people are not getting it. Is this really the best way to do medical research?
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- September 3, 2012 at 7:09 am
You must also consider Anti PD 1 was first used in Kidney and liver cancer.. and it might make approval for those cancers first. They have also stumbled upon the issue of PDL1 and it may be that they are waiting to confirm the fact that if the melanoma does not have the PDL1 it will not benefit those without it. BMS began getting patient releases in June to test their biopsy slides for the PDL1. I think they are being more careful then when PLX 4032 ( Zelboraf ) was first tested on all the patients with and without the Braf mutation and they found that those without it progressed rapidly after being on it.
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- September 3, 2012 at 7:09 am
You must also consider Anti PD 1 was first used in Kidney and liver cancer.. and it might make approval for those cancers first. They have also stumbled upon the issue of PDL1 and it may be that they are waiting to confirm the fact that if the melanoma does not have the PDL1 it will not benefit those without it. BMS began getting patient releases in June to test their biopsy slides for the PDL1. I think they are being more careful then when PLX 4032 ( Zelboraf ) was first tested on all the patients with and without the Braf mutation and they found that those without it progressed rapidly after being on it.
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- September 3, 2012 at 7:09 am
You must also consider Anti PD 1 was first used in Kidney and liver cancer.. and it might make approval for those cancers first. They have also stumbled upon the issue of PDL1 and it may be that they are waiting to confirm the fact that if the melanoma does not have the PDL1 it will not benefit those without it. BMS began getting patient releases in June to test their biopsy slides for the PDL1. I think they are being more careful then when PLX 4032 ( Zelboraf ) was first tested on all the patients with and without the Braf mutation and they found that those without it progressed rapidly after being on it.
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- September 3, 2012 at 5:12 pm
Lynn,
This is a response to both this post and the anti-PD-1 discussion on the MIF Forum on Stage IV. What we are talking about is important enough to be seen in its entirety by all melanoma support and advocacy communities.
BMS doesn't have an approved test but they do have a test to establish the presence of Pd-L-1 that they will use on the data they are collecting from former trial participants as well as data from the upcoming biomarker trial. Please note that they are launching the safety study in hematologic malignancy and advanced tests for NSCLC and Renal cell without having an approved biomarker. Why not for melanoma?
LET'S FACE THE REALITY THAT IF BMS WANTED TO, THEY MIGHT HAVE A VERY GOOD CHANCE OF GETTING FDA APPROVAL OF anti-PD-1 WITH THE DATA THAT THEY ALREADY HAVE AND COULD CERTAINLY MAKE IT AVAILABLE FOR COMPASSIONATE USE.
I simply cannot understand their reluctance to move forward rapidly: they need the revinue to maintain their stock price given the loss of patent protection for Plavix and the recent withdrawal of their hepatitis c product from testing; the failure of many national regulatory agencies to approve Vervoy as a first-line treatment and the failure of many national cost-effectiveness organizations to recommend reimbursement for it; the increasing tendency of oncologists to use BRAF targeted therapies for first-line treatment of patients with the requisite biomarker (see the Kantar Health Survey of Oncologists at ASCO 2012); the rapid advancement of competative versions from Merck and others; and the broad support of anti-PD-1 from all facets of the melanoma community.
They need it now as much as we do!
Alan
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- September 3, 2012 at 5:12 pm
Lynn,
This is a response to both this post and the anti-PD-1 discussion on the MIF Forum on Stage IV. What we are talking about is important enough to be seen in its entirety by all melanoma support and advocacy communities.
BMS doesn't have an approved test but they do have a test to establish the presence of Pd-L-1 that they will use on the data they are collecting from former trial participants as well as data from the upcoming biomarker trial. Please note that they are launching the safety study in hematologic malignancy and advanced tests for NSCLC and Renal cell without having an approved biomarker. Why not for melanoma?
LET'S FACE THE REALITY THAT IF BMS WANTED TO, THEY MIGHT HAVE A VERY GOOD CHANCE OF GETTING FDA APPROVAL OF anti-PD-1 WITH THE DATA THAT THEY ALREADY HAVE AND COULD CERTAINLY MAKE IT AVAILABLE FOR COMPASSIONATE USE.
I simply cannot understand their reluctance to move forward rapidly: they need the revinue to maintain their stock price given the loss of patent protection for Plavix and the recent withdrawal of their hepatitis c product from testing; the failure of many national regulatory agencies to approve Vervoy as a first-line treatment and the failure of many national cost-effectiveness organizations to recommend reimbursement for it; the increasing tendency of oncologists to use BRAF targeted therapies for first-line treatment of patients with the requisite biomarker (see the Kantar Health Survey of Oncologists at ASCO 2012); the rapid advancement of competative versions from Merck and others; and the broad support of anti-PD-1 from all facets of the melanoma community.
They need it now as much as we do!
Alan
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- September 3, 2012 at 5:12 pm
Lynn,
This is a response to both this post and the anti-PD-1 discussion on the MIF Forum on Stage IV. What we are talking about is important enough to be seen in its entirety by all melanoma support and advocacy communities.
BMS doesn't have an approved test but they do have a test to establish the presence of Pd-L-1 that they will use on the data they are collecting from former trial participants as well as data from the upcoming biomarker trial. Please note that they are launching the safety study in hematologic malignancy and advanced tests for NSCLC and Renal cell without having an approved biomarker. Why not for melanoma?
LET'S FACE THE REALITY THAT IF BMS WANTED TO, THEY MIGHT HAVE A VERY GOOD CHANCE OF GETTING FDA APPROVAL OF anti-PD-1 WITH THE DATA THAT THEY ALREADY HAVE AND COULD CERTAINLY MAKE IT AVAILABLE FOR COMPASSIONATE USE.
I simply cannot understand their reluctance to move forward rapidly: they need the revinue to maintain their stock price given the loss of patent protection for Plavix and the recent withdrawal of their hepatitis c product from testing; the failure of many national regulatory agencies to approve Vervoy as a first-line treatment and the failure of many national cost-effectiveness organizations to recommend reimbursement for it; the increasing tendency of oncologists to use BRAF targeted therapies for first-line treatment of patients with the requisite biomarker (see the Kantar Health Survey of Oncologists at ASCO 2012); the rapid advancement of competative versions from Merck and others; and the broad support of anti-PD-1 from all facets of the melanoma community.
They need it now as much as we do!
Alan
-
- September 2, 2012 at 7:25 pm
It's great to read that the Merck version of anti-PD-1 is showing positive results for you and others.. I had similar results 3 1/2 years ago while partipating in the Medarex-BMS phase 1B trial that produced good result for melanoma and two other indications. I remain NED to date. While our results have been great, we remain a very small group: much too small a group because the low priority BMS has given to development of their version in spite of the very positive response from the melanoma community since the publication of initial phase 1b results at ASCO 2010. We need to support one another and work together to make anti-PD-1 available to as many possible melanoma patients as soon as possible either in advanced trials or through compassionate use. We can take advantage of the potential competition to leverage more rapid patient access. We have been given time and the opportunity to act on behalf of those who are less fortunate that we have been. Neither individal patient efforts nor the collaborative efforts of MRF and MIF have moved BMS. Perhaps collective patient activism both alone and in concert with advocacy, research and professional melanoma groups will be more successful. We have to try.
Alan
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- September 4, 2012 at 3:42 am
Awesome news! Thanks for sharing, so happy for you! I am VERY interested in Anti-pd1 as my next move. I have been trying to figure out why it is not at least offered as a compassionate use option. I hope it moves quickly through the process!
Ali
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- September 4, 2012 at 5:58 am
Lynn Luckeroth posted a pd-1 trial that is recruiting, a day or 2 ago. Another post recently mentioned some combo pd-1 trials. I would call MD Anderson, Moffit and NIH and ask about upcoming trials. The clinicaltrials.org site seems to be lagging. Robert
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- September 4, 2012 at 5:58 am
Lynn Luckeroth posted a pd-1 trial that is recruiting, a day or 2 ago. Another post recently mentioned some combo pd-1 trials. I would call MD Anderson, Moffit and NIH and ask about upcoming trials. The clinicaltrials.org site seems to be lagging. Robert
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- September 4, 2012 at 5:58 am
Lynn Luckeroth posted a pd-1 trial that is recruiting, a day or 2 ago. Another post recently mentioned some combo pd-1 trials. I would call MD Anderson, Moffit and NIH and ask about upcoming trials. The clinicaltrials.org site seems to be lagging. Robert
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- October 19, 2012 at 12:04 pm
Brent is being offered an Anti pdp1 trial spot and I have a ton of questions. Could rburce of any the participants please contact me. Is there a test to do before stating on the dp legand?
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- October 19, 2012 at 12:04 pm
Brent is being offered an Anti pdp1 trial spot and I have a ton of questions. Could rburce of any the participants please contact me. Is there a test to do before stating on the dp legand?
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- October 19, 2012 at 12:04 pm
Brent is being offered an Anti pdp1 trial spot and I have a ton of questions. Could rburce of any the participants please contact me. Is there a test to do before stating on the dp legand?
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- December 30, 2013 at 5:48 pm
Hi, just read your comment, very promising and encouraging for me because I will be starting clinical trial in about two weeks. I belong to MRF and I go by ReginaTink. Please keep me updated. I am hoping I get the anti-pd1 slot because Yervoy is also part of the trial and I understand I am ramdomly chosen from Merck what slot or arm I will be in.
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- February 15, 2014 at 9:02 pm
Hi bruce, I have not been on MRF for a while. I was picked to be on yervoy treatment and had 2nd treatment last week. Not feeling bad but I am fatigued and have a slight rash. My big day will be april 9th for my pet scan results. ReginaTink
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- February 15, 2014 at 9:02 pm
Hi bruce, I have not been on MRF for a while. I was picked to be on yervoy treatment and had 2nd treatment last week. Not feeling bad but I am fatigued and have a slight rash. My big day will be april 9th for my pet scan results. ReginaTink
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- February 15, 2014 at 9:02 pm
Hi bruce, I have not been on MRF for a while. I was picked to be on yervoy treatment and had 2nd treatment last week. Not feeling bad but I am fatigued and have a slight rash. My big day will be april 9th for my pet scan results. ReginaTink
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- December 30, 2013 at 5:48 pm
Hi, just read your comment, very promising and encouraging for me because I will be starting clinical trial in about two weeks. I belong to MRF and I go by ReginaTink. Please keep me updated. I am hoping I get the anti-pd1 slot because Yervoy is also part of the trial and I understand I am ramdomly chosen from Merck what slot or arm I will be in.
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- December 30, 2013 at 5:48 pm
Hi, just read your comment, very promising and encouraging for me because I will be starting clinical trial in about two weeks. I belong to MRF and I go by ReginaTink. Please keep me updated. I am hoping I get the anti-pd1 slot because Yervoy is also part of the trial and I understand I am ramdomly chosen from Merck what slot or arm I will be in.
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