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The Lab Rat Question

Forums General Melanoma Community The Lab Rat Question

  • Post
    G-Samsa
    Participant

      In response to Charlie's comment about the somewhat strange concern expressed at ASCO about how the success of some of the new immunotherapies to offer viable treatment may be a worrisome disincentive for participation in trials…..Unfortunately, I have to say "fear not"–with more than half of the patients not responding there should be a sizable (and hopeful) population looking for the next breakthrough drug (especially if trial protocols can be defined to include non-naive patients!)  My MM began to progress after three year successful run on Ipi/Nivo (as part of a trial) and I can tell you that for all the advances once you fail the combo the treatment landscape looked bleak.  I am currently stable after a life raft TIL treatment in November.  My worries center more on any reticence on the part of drug companies to develop new next stage drugs until the current generation has earned the expected profits ( hasn't BMS bought the company developing IDO inhibitors?)  As a MM patient I have learned to keep an eye out for the next new thing-/I for one would love to know that IDO, OX40 and some other promising molecules were approved or available in innovative trials– and would be willing participant in a trial (out of self-interest) if it comes to that.  

    Viewing 14 reply threads
    • Replies
        mary1233
        Participant

          Hello to all.

          Maybe someone who is better at finding things on the web can help with this. I saw a webinar? video? (not sure what exactly) in May 2016 and halfway through Dr. Michael Postow spoke about participating in clinical trials. He said that in some cases it makes sense to participate in a clinical trial as a first line of treatment rather than a last because the patient could get access to a more effective treatment. In my mind this kind of makes sense because the patient could be in better shape and more responsive.

          If someone finds this would you please post it?

          Thanks.

          And just as an aside – I am greatful to MRF for providing this forum for patients to share opinions and support.

          mary1233
          Participant

            Hello to all.

            Maybe someone who is better at finding things on the web can help with this. I saw a webinar? video? (not sure what exactly) in May 2016 and halfway through Dr. Michael Postow spoke about participating in clinical trials. He said that in some cases it makes sense to participate in a clinical trial as a first line of treatment rather than a last because the patient could get access to a more effective treatment. In my mind this kind of makes sense because the patient could be in better shape and more responsive.

            If someone finds this would you please post it?

            Thanks.

            And just as an aside – I am greatful to MRF for providing this forum for patients to share opinions and support.

            mary1233
            Participant

              Hello to all.

              Maybe someone who is better at finding things on the web can help with this. I saw a webinar? video? (not sure what exactly) in May 2016 and halfway through Dr. Michael Postow spoke about participating in clinical trials. He said that in some cases it makes sense to participate in a clinical trial as a first line of treatment rather than a last because the patient could get access to a more effective treatment. In my mind this kind of makes sense because the patient could be in better shape and more responsive.

              If someone finds this would you please post it?

              Thanks.

              And just as an aside – I am greatful to MRF for providing this forum for patients to share opinions and support.

                ed williams
                Participant

                  Hi Anonymous, I think I have the video with Dr.Michael Postow that you are looking for. https://www.youtube.com/watch?v=Qd9fCi001n0     I also want to sprinkle in one from Dr. Jason Luke talking to Catherrine Poole that has a element of clinicial trials in it. You have to register with Melanoma International for this one, they don't send junk mail afterwards!!!! http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/?done=1#.V1WlrM6cHIU    Just a quick thought on trials, almost every leading Melanoma experts that I have ever listen too give a presentation at some point talks about clinical trials especially in the what is new and what is next in Melanoma part of their presentation. I have been lucky, in my own experience to be part of checkmate 067 from BMS. If during the next scan period things change for me, I wouldn't hesitate to try another trial involving another Immunotherapy inhibitor or stimulator monotherapy or in combination with IDO. I for one love the science that is going on with Immunotherapy but more importantly for selfish reasons of wanting to be around to watch my daughter grow up, I think I would probably try just about anything to stay in the game!!! Best wishes!!! Ed

                  ed williams
                  Participant

                    Hi Anonymous, I think I have the video with Dr.Michael Postow that you are looking for. https://www.youtube.com/watch?v=Qd9fCi001n0     I also want to sprinkle in one from Dr. Jason Luke talking to Catherrine Poole that has a element of clinicial trials in it. You have to register with Melanoma International for this one, they don't send junk mail afterwards!!!! http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/?done=1#.V1WlrM6cHIU    Just a quick thought on trials, almost every leading Melanoma experts that I have ever listen too give a presentation at some point talks about clinical trials especially in the what is new and what is next in Melanoma part of their presentation. I have been lucky, in my own experience to be part of checkmate 067 from BMS. If during the next scan period things change for me, I wouldn't hesitate to try another trial involving another Immunotherapy inhibitor or stimulator monotherapy or in combination with IDO. I for one love the science that is going on with Immunotherapy but more importantly for selfish reasons of wanting to be around to watch my daughter grow up, I think I would probably try just about anything to stay in the game!!! Best wishes!!! Ed

                    ed williams
                    Participant

                      Hi Anonymous, I think I have the video with Dr.Michael Postow that you are looking for. https://www.youtube.com/watch?v=Qd9fCi001n0     I also want to sprinkle in one from Dr. Jason Luke talking to Catherrine Poole that has a element of clinicial trials in it. You have to register with Melanoma International for this one, they don't send junk mail afterwards!!!! http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/?done=1#.V1WlrM6cHIU    Just a quick thought on trials, almost every leading Melanoma experts that I have ever listen too give a presentation at some point talks about clinical trials especially in the what is new and what is next in Melanoma part of their presentation. I have been lucky, in my own experience to be part of checkmate 067 from BMS. If during the next scan period things change for me, I wouldn't hesitate to try another trial involving another Immunotherapy inhibitor or stimulator monotherapy or in combination with IDO. I for one love the science that is going on with Immunotherapy but more importantly for selfish reasons of wanting to be around to watch my daughter grow up, I think I would probably try just about anything to stay in the game!!! Best wishes!!! Ed

                      ed williams
                      Participant

                        Hi again Anonymous, I have another video from Dr.Postow speaking at the Angeles clinic last year on new trials and therapies. https://www.youtube.com/watch?v=6QRuBkOr0cQ and the last one which features Dr.Omid Hamid from the Angeles Clinic on clinical trials and new therapies!!!! https://www.youtube.com/watch?v=10nUgi5R9UE    I hope they are of some help to those looking for options!!Ed

                        ed williams
                        Participant

                          Hi again Anonymous, I have another video from Dr.Postow speaking at the Angeles clinic last year on new trials and therapies. https://www.youtube.com/watch?v=6QRuBkOr0cQ and the last one which features Dr.Omid Hamid from the Angeles Clinic on clinical trials and new therapies!!!! https://www.youtube.com/watch?v=10nUgi5R9UE    I hope they are of some help to those looking for options!!Ed

                          ed williams
                          Participant

                            Hi again Anonymous, I have another video from Dr.Postow speaking at the Angeles clinic last year on new trials and therapies. https://www.youtube.com/watch?v=6QRuBkOr0cQ and the last one which features Dr.Omid Hamid from the Angeles Clinic on clinical trials and new therapies!!!! https://www.youtube.com/watch?v=10nUgi5R9UE    I hope they are of some help to those looking for options!!Ed

                          Bubbles
                          Participant

                            Here you go….  report out of ASCO re OX40 and some other options:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-other-therapies-after-failing.html

                            Here is a report on mucosal/acral mel and anti-PD1 out of ASCO as well:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                            For what it's worth.  I wish you well.  Celeste

                            Bubbles
                            Participant

                              Here you go….  report out of ASCO re OX40 and some other options:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-other-therapies-after-failing.html

                              Here is a report on mucosal/acral mel and anti-PD1 out of ASCO as well:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                              For what it's worth.  I wish you well.  Celeste

                              Bubbles
                              Participant

                                Here you go….  report out of ASCO re OX40 and some other options:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-other-therapies-after-failing.html

                                Here is a report on mucosal/acral mel and anti-PD1 out of ASCO as well:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                For what it's worth.  I wish you well.  Celeste

                                Bubbles
                                Participant

                                  And here is a report that Weber presented about lots of up and coming treatments (including an IDO combo):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

                                  good luck.  c

                                  Bubbles
                                  Participant

                                    And here is a report that Weber presented about lots of up and coming treatments (including an IDO combo):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

                                    good luck.  c

                                    Bubbles
                                    Participant

                                      And here is a report that Weber presented about lots of up and coming treatments (including an IDO combo):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

                                      good luck.  c

                                      Polymath
                                      Participant

                                        Thanks Celeste for the links as there are many of us, like G-Samsa who are looking at the end of the line when ipi/nivo either fails, or runs its course.  Clinical trials become the only viable option without stepping back into time with more traditional chemo therapies with even worse response rates.  While I respect Charlie's years of experience and vast knowledge base, I thought his reaction to Tim's comments a bit of an over-reach.  Also, of particular note should be that despite the ACA allowing just about anybody to purchase health insurance, there are those who either have no insurance, or whose policy is at the lower coverage range have co-pays that would bankrupt many when considering the cost of modern immunotherapy treatment.  Trials become almost the only viable option, and while most would do it for themselves, there are still plenty of people who hope to be helped, but remain cognizant that they may help future generations of patients.

                                        Gary

                                          Charlie S
                                          Participant

                                            Good post polymath; and yes my comment(s) could well be considered an over reach except it accompliished my intent………………………to drive a conversation into previously unsaid conversations.

                                            This is now , and always has been part of the problem with melanoma treatment; people being either unable or unwilling to raise a bit of hell when receiving a shoulder shrug from the medical community and then coming up with bogus spins.

                                            I so remember all the news everywhere about "game changers, new horizons, cosmic shifts, historic medical changes" and so on with the approval of Yervoy, and then,,,,,,,,,,,and then,,,,,,,,,,,.  Anyway, five drugs later here we are again

                                            WHAT WORKS FOR ONE PATIENT DOES NOT WORK FOR THE OTHER.

                                            I am NOT against clinical trials what I AM against and  pissed off about is after 29 years since I was diagnosed all we still have for advanced disease is "well you need to enroll in a clinical trial".

                                            Melanoma is still  the most lonley of all cancers and the only thing I know to do is raise my voice and question everything and everyone who tells me they know how to keep me me from dying from it.

                                            If that pisses somebody, anybody or everybody  off ; then so be so be it.

                                            I honestly, truly and deep down in my heart believe that had I not fired doctors, refused to accept medical convention, intelectually rejected medical opinions not supported by emperical evidence, questioned the institutional motives of biased treatment groups and most of all, pushed anyone out of my way who purported to speak on my behalf for my own well being……..I would not be alive today.

                                            I have personally done plenty to "help" the future; how about a little help for the here and now?

                                            Yeah, so what, I have an attitude.

                                            Cheers,

                                            Charlie S

                                             

                                             

                                            Charlie S
                                            Participant

                                              Good post polymath; and yes my comment(s) could well be considered an over reach except it accompliished my intent………………………to drive a conversation into previously unsaid conversations.

                                              This is now , and always has been part of the problem with melanoma treatment; people being either unable or unwilling to raise a bit of hell when receiving a shoulder shrug from the medical community and then coming up with bogus spins.

                                              I so remember all the news everywhere about "game changers, new horizons, cosmic shifts, historic medical changes" and so on with the approval of Yervoy, and then,,,,,,,,,,,and then,,,,,,,,,,,.  Anyway, five drugs later here we are again

                                              WHAT WORKS FOR ONE PATIENT DOES NOT WORK FOR THE OTHER.

                                              I am NOT against clinical trials what I AM against and  pissed off about is after 29 years since I was diagnosed all we still have for advanced disease is "well you need to enroll in a clinical trial".

                                              Melanoma is still  the most lonley of all cancers and the only thing I know to do is raise my voice and question everything and everyone who tells me they know how to keep me me from dying from it.

                                              If that pisses somebody, anybody or everybody  off ; then so be so be it.

                                              I honestly, truly and deep down in my heart believe that had I not fired doctors, refused to accept medical convention, intelectually rejected medical opinions not supported by emperical evidence, questioned the institutional motives of biased treatment groups and most of all, pushed anyone out of my way who purported to speak on my behalf for my own well being……..I would not be alive today.

                                              I have personally done plenty to "help" the future; how about a little help for the here and now?

                                              Yeah, so what, I have an attitude.

                                              Cheers,

                                              Charlie S

                                               

                                               

                                              Charlie S
                                              Participant

                                                Good post polymath; and yes my comment(s) could well be considered an over reach except it accompliished my intent………………………to drive a conversation into previously unsaid conversations.

                                                This is now , and always has been part of the problem with melanoma treatment; people being either unable or unwilling to raise a bit of hell when receiving a shoulder shrug from the medical community and then coming up with bogus spins.

                                                I so remember all the news everywhere about "game changers, new horizons, cosmic shifts, historic medical changes" and so on with the approval of Yervoy, and then,,,,,,,,,,,and then,,,,,,,,,,,.  Anyway, five drugs later here we are again

                                                WHAT WORKS FOR ONE PATIENT DOES NOT WORK FOR THE OTHER.

                                                I am NOT against clinical trials what I AM against and  pissed off about is after 29 years since I was diagnosed all we still have for advanced disease is "well you need to enroll in a clinical trial".

                                                Melanoma is still  the most lonley of all cancers and the only thing I know to do is raise my voice and question everything and everyone who tells me they know how to keep me me from dying from it.

                                                If that pisses somebody, anybody or everybody  off ; then so be so be it.

                                                I honestly, truly and deep down in my heart believe that had I not fired doctors, refused to accept medical convention, intelectually rejected medical opinions not supported by emperical evidence, questioned the institutional motives of biased treatment groups and most of all, pushed anyone out of my way who purported to speak on my behalf for my own well being……..I would not be alive today.

                                                I have personally done plenty to "help" the future; how about a little help for the here and now?

                                                Yeah, so what, I have an attitude.

                                                Cheers,

                                                Charlie S

                                                 

                                                 

                                              Polymath
                                              Participant

                                                Thanks Celeste for the links as there are many of us, like G-Samsa who are looking at the end of the line when ipi/nivo either fails, or runs its course.  Clinical trials become the only viable option without stepping back into time with more traditional chemo therapies with even worse response rates.  While I respect Charlie's years of experience and vast knowledge base, I thought his reaction to Tim's comments a bit of an over-reach.  Also, of particular note should be that despite the ACA allowing just about anybody to purchase health insurance, there are those who either have no insurance, or whose policy is at the lower coverage range have co-pays that would bankrupt many when considering the cost of modern immunotherapy treatment.  Trials become almost the only viable option, and while most would do it for themselves, there are still plenty of people who hope to be helped, but remain cognizant that they may help future generations of patients.

                                                Gary

                                                Polymath
                                                Participant

                                                  Thanks Celeste for the links as there are many of us, like G-Samsa who are looking at the end of the line when ipi/nivo either fails, or runs its course.  Clinical trials become the only viable option without stepping back into time with more traditional chemo therapies with even worse response rates.  While I respect Charlie's years of experience and vast knowledge base, I thought his reaction to Tim's comments a bit of an over-reach.  Also, of particular note should be that despite the ACA allowing just about anybody to purchase health insurance, there are those who either have no insurance, or whose policy is at the lower coverage range have co-pays that would bankrupt many when considering the cost of modern immunotherapy treatment.  Trials become almost the only viable option, and while most would do it for themselves, there are still plenty of people who hope to be helped, but remain cognizant that they may help future generations of patients.

                                                  Gary

                                                  Tim–MRF
                                                  Guest

                                                    Thank you for launching a very helpful conversation on this topic. When no effective treatments were available, enrolling in a trial made a lot of sense. Now the decision is more nuanced. The good thing is that trials now offer a "control" arm that is standard of care. The other arm is usually standard of care plus something else that might make it better. Some of what the researchers are saying, as referenced in this dialog, is that the level of care in clinical trials can be different. This is not to say that the doctors and nurses do a better job. Rather, in trials patients tend to get more scans, more tests, more appointments, and closer observation. 

                                                    Having said that, enrolling in a trial sometimes means a delay in treatment  for a couple of weeks while tests are done. Most people who are newly diagnosed are anxious to get started on something.

                                                    Regarding how the companies are dealing with this, I don't worry about them buying up competing drugs. The landscape is so competitive that they are all pushing to get the newest, best thing on the market. I met two days ago with a company that will be opening an IDO trial very soon, and others are working in that space as well. The bigger concern, to me, is that big pharma may think they have done their job in melanoma. Nothing could be further from the truth. All the melanoma advocacy groups are pushing to have more and more work done in this space. As I walked through ASCO I looked for companies who listed in their drug pipeline anything that might be relevant in melanoma: PD-1, PD-L1, MEK, PI3k, OX-40, IDO, etc. I was pleased to find three new companies who plan to open studies in melanoma.

                                                    We should be honest, though, and recognize that the huge investment in the anti-PD1 drugs was possible because the companies saw big sales potential in other tumor types such as lung. Melanoma responds unusually well to immunotherapy, probably because cutaneous melanoma has more somatic mutations than any other cancer. (This does not hold true for uveal melanoma, which has very few mutations.) Because of this, it was a logical area to initiate studies in immuno-oncology. The real money, though is in the more common cancers. In the US, we see about 9000 deaths a year from melanoma and about 160,000 from lung cancer.

                                                    One speaker today put it very well when he noted that despite all of the progress of the past five years, he still sees too many patients who come in with melanoma and he knows that he can do very little for them. I find that the research community is committed to continuing to push.

                                                     

                                                    Tim–MRF

                                                     

                                                     

                                                     

                                                    Tim–MRF
                                                    Guest

                                                      Thank you for launching a very helpful conversation on this topic. When no effective treatments were available, enrolling in a trial made a lot of sense. Now the decision is more nuanced. The good thing is that trials now offer a "control" arm that is standard of care. The other arm is usually standard of care plus something else that might make it better. Some of what the researchers are saying, as referenced in this dialog, is that the level of care in clinical trials can be different. This is not to say that the doctors and nurses do a better job. Rather, in trials patients tend to get more scans, more tests, more appointments, and closer observation. 

                                                      Having said that, enrolling in a trial sometimes means a delay in treatment  for a couple of weeks while tests are done. Most people who are newly diagnosed are anxious to get started on something.

                                                      Regarding how the companies are dealing with this, I don't worry about them buying up competing drugs. The landscape is so competitive that they are all pushing to get the newest, best thing on the market. I met two days ago with a company that will be opening an IDO trial very soon, and others are working in that space as well. The bigger concern, to me, is that big pharma may think they have done their job in melanoma. Nothing could be further from the truth. All the melanoma advocacy groups are pushing to have more and more work done in this space. As I walked through ASCO I looked for companies who listed in their drug pipeline anything that might be relevant in melanoma: PD-1, PD-L1, MEK, PI3k, OX-40, IDO, etc. I was pleased to find three new companies who plan to open studies in melanoma.

                                                      We should be honest, though, and recognize that the huge investment in the anti-PD1 drugs was possible because the companies saw big sales potential in other tumor types such as lung. Melanoma responds unusually well to immunotherapy, probably because cutaneous melanoma has more somatic mutations than any other cancer. (This does not hold true for uveal melanoma, which has very few mutations.) Because of this, it was a logical area to initiate studies in immuno-oncology. The real money, though is in the more common cancers. In the US, we see about 9000 deaths a year from melanoma and about 160,000 from lung cancer.

                                                      One speaker today put it very well when he noted that despite all of the progress of the past five years, he still sees too many patients who come in with melanoma and he knows that he can do very little for them. I find that the research community is committed to continuing to push.

                                                       

                                                      Tim–MRF

                                                       

                                                       

                                                       

                                                        Charlie S
                                                        Participant

                                                          "One speaker today put it very well when he noted that despite all of the progress of the past five years, he still sees too many patients who come in with melanoma and he knows that he can do very little for them."

                                                          I agree; and it should not be that way.

                                                          I'll give you this Tim, you have certainly been tolerant of my viewpoints and posts about melanoma.

                                                          All I want is less talk and more action to stop the suffering.

                                                           

                                                          Charlie S

                                                          Charlie S
                                                          Participant

                                                            "One speaker today put it very well when he noted that despite all of the progress of the past five years, he still sees too many patients who come in with melanoma and he knows that he can do very little for them."

                                                            I agree; and it should not be that way.

                                                            I'll give you this Tim, you have certainly been tolerant of my viewpoints and posts about melanoma.

                                                            All I want is less talk and more action to stop the suffering.

                                                             

                                                            Charlie S

                                                            Charlie S
                                                            Participant

                                                              "One speaker today put it very well when he noted that despite all of the progress of the past five years, he still sees too many patients who come in with melanoma and he knows that he can do very little for them."

                                                              I agree; and it should not be that way.

                                                              I'll give you this Tim, you have certainly been tolerant of my viewpoints and posts about melanoma.

                                                              All I want is less talk and more action to stop the suffering.

                                                               

                                                              Charlie S

                                                            Tim–MRF
                                                            Guest

                                                              Thank you for launching a very helpful conversation on this topic. When no effective treatments were available, enrolling in a trial made a lot of sense. Now the decision is more nuanced. The good thing is that trials now offer a "control" arm that is standard of care. The other arm is usually standard of care plus something else that might make it better. Some of what the researchers are saying, as referenced in this dialog, is that the level of care in clinical trials can be different. This is not to say that the doctors and nurses do a better job. Rather, in trials patients tend to get more scans, more tests, more appointments, and closer observation. 

                                                              Having said that, enrolling in a trial sometimes means a delay in treatment  for a couple of weeks while tests are done. Most people who are newly diagnosed are anxious to get started on something.

                                                              Regarding how the companies are dealing with this, I don't worry about them buying up competing drugs. The landscape is so competitive that they are all pushing to get the newest, best thing on the market. I met two days ago with a company that will be opening an IDO trial very soon, and others are working in that space as well. The bigger concern, to me, is that big pharma may think they have done their job in melanoma. Nothing could be further from the truth. All the melanoma advocacy groups are pushing to have more and more work done in this space. As I walked through ASCO I looked for companies who listed in their drug pipeline anything that might be relevant in melanoma: PD-1, PD-L1, MEK, PI3k, OX-40, IDO, etc. I was pleased to find three new companies who plan to open studies in melanoma.

                                                              We should be honest, though, and recognize that the huge investment in the anti-PD1 drugs was possible because the companies saw big sales potential in other tumor types such as lung. Melanoma responds unusually well to immunotherapy, probably because cutaneous melanoma has more somatic mutations than any other cancer. (This does not hold true for uveal melanoma, which has very few mutations.) Because of this, it was a logical area to initiate studies in immuno-oncology. The real money, though is in the more common cancers. In the US, we see about 9000 deaths a year from melanoma and about 160,000 from lung cancer.

                                                              One speaker today put it very well when he noted that despite all of the progress of the past five years, he still sees too many patients who come in with melanoma and he knows that he can do very little for them. I find that the research community is committed to continuing to push.

                                                               

                                                              Tim–MRF

                                                               

                                                               

                                                               

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