any complete responder to ipi or pd1 after fail Braf/Mek? VERY USEFUL QUESTION

jualonso, I read your most recent post and realize that you've posted the same or a similar question five or six times in the past few weeks.  Clearly it's important to you and I hope we can collectively help you find some more information about this for you.  Perhaps you could provide some more information about yourself and your diagnosis, either here or in your profile?  It might help us all better understand your situation and point you in the right direction, and those in a similar situation might better be able to share their experiences with you.  In the time I've spent here, I know that many want to help.

I am BRAF-positive, but have not yet used any of the BRAF targeted therapies, instead having done several immunotherapies over the past four years (IL-2, TIL, and ipi — but not yet PD-1), so I don't have direct experience with sequencing of BRAF therapies and immunotherapies.  However, from what I've heard, read, and discussed with my own medical oncologist, there is not a great deal of advanced research on sequencing the two.  It's in progress, and I'm certain that any melanoma expert has some opinion and experience with patients on the topic.  I'm also sure that there are patients who have done well on immunotherapies after having failed BRAF therapies, and vice-versa.  Much progress has been made with both targeted and immunotherapy, a key next area of focus for research is how to match patients to the best treatment for them and also the best sequence.  Sometimes the current status will drive the decision.  For example, someone with a large tumor burden may not have the time to wait for a delayed immunotherapy response and a BRAF targeted therapy may provide a "bridge" to reduce the tumor burden and then transition to ipi or an anti-PD-1.  Others may take the opposite approach.  There are successes, and failures, in both approaches.

Again, though, if you would share a little more, I imagine you will hear from others who have faced similar decisions to what you may be facing.

Warmly, Joe

jualonso, I read your most recent post and realize that you've posted the same or a similar question five or six times in the past few weeks.  Clearly it's important to you and I hope we can collectively help you find some more information about this for you.  Perhaps you could provide some more information about yourself and your diagnosis, either here or in your profile?  It might help us all better understand your situation and point you in the right direction, and those in a similar situation might better be able to share their experiences with you.  In the time I've spent here, I know that many want to help.

I am BRAF-positive, but have not yet used any of the BRAF targeted therapies, instead having done several immunotherapies over the past four years (IL-2, TIL, and ipi — but not yet PD-1), so I don't have direct experience with sequencing of BRAF therapies and immunotherapies.  However, from what I've heard, read, and discussed with my own medical oncologist, there is not a great deal of advanced research on sequencing the two.  It's in progress, and I'm certain that any melanoma expert has some opinion and experience with patients on the topic.  I'm also sure that there are patients who have done well on immunotherapies after having failed BRAF therapies, and vice-versa.  Much progress has been made with both targeted and immunotherapy, a key next area of focus for research is how to match patients to the best treatment for them and also the best sequence.  Sometimes the current status will drive the decision.  For example, someone with a large tumor burden may not have the time to wait for a delayed immunotherapy response and a BRAF targeted therapy may provide a "bridge" to reduce the tumor burden and then transition to ipi or an anti-PD-1.  Others may take the opposite approach.  There are successes, and failures, in both approaches.

Again, though, if you would share a little more, I imagine you will hear from others who have faced similar decisions to what you may be facing.

Warmly, Joe

jualonso, I read your most recent post and realize that you've posted the same or a similar question five or six times in the past few weeks.  Clearly it's important to you and I hope we can collectively help you find some more information about this for you.  Perhaps you could provide some more information about yourself and your diagnosis, either here or in your profile?  It might help us all better understand your situation and point you in the right direction, and those in a similar situation might better be able to share their experiences with you.  In the time I've spent here, I know that many want to help.

I am BRAF-positive, but have not yet used any of the BRAF targeted therapies, instead having done several immunotherapies over the past four years (IL-2, TIL, and ipi — but not yet PD-1), so I don't have direct experience with sequencing of BRAF therapies and immunotherapies.  However, from what I've heard, read, and discussed with my own medical oncologist, there is not a great deal of advanced research on sequencing the two.  It's in progress, and I'm certain that any melanoma expert has some opinion and experience with patients on the topic.  I'm also sure that there are patients who have done well on immunotherapies after having failed BRAF therapies, and vice-versa.  Much progress has been made with both targeted and immunotherapy, a key next area of focus for research is how to match patients to the best treatment for them and also the best sequence.  Sometimes the current status will drive the decision.  For example, someone with a large tumor burden may not have the time to wait for a delayed immunotherapy response and a BRAF targeted therapy may provide a "bridge" to reduce the tumor burden and then transition to ipi or an anti-PD-1.  Others may take the opposite approach.  There are successes, and failures, in both approaches.

Again, though, if you would share a little more, I imagine you will hear from others who have faced similar decisions to what you may be facing.

Warmly, Joe

The base answer is Yes.  One point to make is that even a complete responder is not automatically "CURED".  Some people have had a acomplete response to the old chemo's after failing the new, generally more effective treatments.  People have failed Ipi and had a complete response to IL-2, People have failed IL-2 and been a complete responder to Ipi.  Same goes for PD-1.  The long term response to Ipi and PD-1 is unknown.  They haven't been around long enough.  I have often read reports from experienced IL-2 practicioners that they have never had a patient that was a complete responder with no relapse within  30 months to ever relapse.  This has extended lifes for over twenty years.  It is hoped that Ipi which has about the same response rate as IL-2 will show some long term responses as well.  PD-1 has a positive response rate twice that of either IL-2 nde Ipi.  It's long term "Cure" rate is hoped to be even better than the other two immunotherapies.  Nothing id set in concrete with melanoma.

The base answer is Yes.  One point to make is that even a complete responder is not automatically "CURED".  Some people have had a acomplete response to the old chemo's after failing the new, generally more effective treatments.  People have failed Ipi and had a complete response to IL-2, People have failed IL-2 and been a complete responder to Ipi.  Same goes for PD-1.  The long term response to Ipi and PD-1 is unknown.  They haven't been around long enough.  I have often read reports from experienced IL-2 practicioners that they have never had a patient that was a complete responder with no relapse within  30 months to ever relapse.  This has extended lifes for over twenty years.  It is hoped that Ipi which has about the same response rate as IL-2 will show some long term responses as well.  PD-1 has a positive response rate twice that of either IL-2 nde Ipi.  It's long term "Cure" rate is hoped to be even better than the other two immunotherapies.  Nothing id set in concrete with melanoma.

The base answer is Yes.  One point to make is that even a complete responder is not automatically "CURED".  Some people have had a acomplete response to the old chemo's after failing the new, generally more effective treatments.  People have failed Ipi and had a complete response to IL-2, People have failed IL-2 and been a complete responder to Ipi.  Same goes for PD-1.  The long term response to Ipi and PD-1 is unknown.  They haven't been around long enough.  I have often read reports from experienced IL-2 practicioners that they have never had a patient that was a complete responder with no relapse within  30 months to ever relapse.  This has extended lifes for over twenty years.  It is hoped that Ipi which has about the same response rate as IL-2 will show some long term responses as well.  PD-1 has a positive response rate twice that of either IL-2 nde Ipi.  It's long term "Cure" rate is hoped to be even better than the other two immunotherapies.  Nothing id set in concrete with melanoma.

jualonso, thanks for providing some more detail about your situation, I think it helps everyone better understand what you're asking and perhaps provide some better answers for you.  Definitely some great information, as always, from Celeste and Jerry above.  I know the language difference can make things more difficult, but you're doing fine, just continue to write things out and we'll figure it out.  My wife is a native Spanish speaker (from Puerto Rico), so my "Spanglish" translation skills are pretty good, too.

I can't add a lot more to what's already been said about the timing and sequencing of BRAF-targeted therapies and immunotherapies.  It is an important question to ask, and as noted above, something that some of the top melanoma experts in the U.S. are studying and beginning to formulate opinions.  The sample sizes are small, but it's key to remember that there are success stories with many approaches.  Some have found long-term success with BRAF and/or MEK inhibitors alone, others with checkpoint inhibitor immunotherapies (anti-CTLA-4/ipilimumab/Yervoy, anti-PD-1/nivolumab/pembrolizumab) alone.  Some have found that they progressed on one and succeeded on the other, and some have not.  Much depends on your individual situation, and, unfortunately, sometimes includes what is available to us from a regulatory approval perspective.  I certainly recommend you explore your options, seek second opinions from other experts available to you, and consider clinical trials.  But I also suggest that there is no "perfect" decision.  Not enough is known about timing and sequencing right now, so continue your research, understand your options and then make the best decision you can make given the information you have today.  Everyone here has followed a different path because our disease and situation is different — none of us will know for certain if it was the absolute correct decision, but can hopefully take comfort knowing that we used all our resources to do our best.

My best to you, Joe

jualonso, thanks for providing some more detail about your situation, I think it helps everyone better understand what you're asking and perhaps provide some better answers for you.  Definitely some great information, as always, from Celeste and Jerry above.  I know the language difference can make things more difficult, but you're doing fine, just continue to write things out and we'll figure it out.  My wife is a native Spanish speaker (from Puerto Rico), so my "Spanglish" translation skills are pretty good, too.

I can't add a lot more to what's already been said about the timing and sequencing of BRAF-targeted therapies and immunotherapies.  It is an important question to ask, and as noted above, something that some of the top melanoma experts in the U.S. are studying and beginning to formulate opinions.  The sample sizes are small, but it's key to remember that there are success stories with many approaches.  Some have found long-term success with BRAF and/or MEK inhibitors alone, others with checkpoint inhibitor immunotherapies (anti-CTLA-4/ipilimumab/Yervoy, anti-PD-1/nivolumab/pembrolizumab) alone.  Some have found that they progressed on one and succeeded on the other, and some have not.  Much depends on your individual situation, and, unfortunately, sometimes includes what is available to us from a regulatory approval perspective.  I certainly recommend you explore your options, seek second opinions from other experts available to you, and consider clinical trials.  But I also suggest that there is no "perfect" decision.  Not enough is known about timing and sequencing right now, so continue your research, understand your options and then make the best decision you can make given the information you have today.  Everyone here has followed a different path because our disease and situation is different — none of us will know for certain if it was the absolute correct decision, but can hopefully take comfort knowing that we used all our resources to do our best.

My best to you, Joe

jualonso, thanks for providing some more detail about your situation, I think it helps everyone better understand what you're asking and perhaps provide some better answers for you.  Definitely some great information, as always, from Celeste and Jerry above.  I know the language difference can make things more difficult, but you're doing fine, just continue to write things out and we'll figure it out.  My wife is a native Spanish speaker (from Puerto Rico), so my "Spanglish" translation skills are pretty good, too.

I can't add a lot more to what's already been said about the timing and sequencing of BRAF-targeted therapies and immunotherapies.  It is an important question to ask, and as noted above, something that some of the top melanoma experts in the U.S. are studying and beginning to formulate opinions.  The sample sizes are small, but it's key to remember that there are success stories with many approaches.  Some have found long-term success with BRAF and/or MEK inhibitors alone, others with checkpoint inhibitor immunotherapies (anti-CTLA-4/ipilimumab/Yervoy, anti-PD-1/nivolumab/pembrolizumab) alone.  Some have found that they progressed on one and succeeded on the other, and some have not.  Much depends on your individual situation, and, unfortunately, sometimes includes what is available to us from a regulatory approval perspective.  I certainly recommend you explore your options, seek second opinions from other experts available to you, and consider clinical trials.  But I also suggest that there is no "perfect" decision.  Not enough is known about timing and sequencing right now, so continue your research, understand your options and then make the best decision you can make given the information you have today.  Everyone here has followed a different path because our disease and situation is different — none of us will know for certain if it was the absolute correct decision, but can hopefully take comfort knowing that we used all our resources to do our best.

My best to you, Joe

Hi Jualalonso,

I have been following your posts on this forum as well as the MIF.

I would really like to know what is so very USEFUL about this question that it needs to be asked several times.

What does it tell you about your future if anybody on this forum has responded well to immunotherapy after targeted therapy. I guess you have gotten hooked onto certain statistics and now you want to find a proof of the opposite.

I am also stage IV, also on the Combo and will know tomorrow if I have failed it after weeks of pain in my chest. So believe me i can understand your situation.

We all want to k ow how long we can survive with this terrible illness. When I first found this forum I returned every few hours to find an answer to that. I believe this is what you are trying to do by reposting that same question over and over again.

the facts i know: most of the treatments are so new that they do not have any reliable long term figures on that. They just do not know why some people do not fail BRAF / Mek for several years and others after a few months. Some people have lived after getting Ipi for 3 months, others for over 10 years. Where am I going to be?

For me it helps to pray a lot because I think only god knows and will guide me on this horrible journey. If you do not believe in god then you will have to find a different way of coping with this desease. 

but one thing is clear: uncertainty about how you are going to be doing in a few days / weeks  / months is now part of your life and this will not change anymore. People in this forum can help you a great deal but they will not be able to give you certainty as to what your way will look like!

Hi Jualalonso,

I have been following your posts on this forum as well as the MIF.

I would really like to know what is so very USEFUL about this question that it needs to be asked several times.

What does it tell you about your future if anybody on this forum has responded well to immunotherapy after targeted therapy. I guess you have gotten hooked onto certain statistics and now you want to find a proof of the opposite.

I am also stage IV, also on the Combo and will know tomorrow if I have failed it after weeks of pain in my chest. So believe me i can understand your situation.

We all want to k ow how long we can survive with this terrible illness. When I first found this forum I returned every few hours to find an answer to that. I believe this is what you are trying to do by reposting that same question over and over again.

the facts i know: most of the treatments are so new that they do not have any reliable long term figures on that. They just do not know why some people do not fail BRAF / Mek for several years and others after a few months. Some people have lived after getting Ipi for 3 months, others for over 10 years. Where am I going to be?

For me it helps to pray a lot because I think only god knows and will guide me on this horrible journey. If you do not believe in god then you will have to find a different way of coping with this desease. 

but one thing is clear: uncertainty about how you are going to be doing in a few days / weeks  / months is now part of your life and this will not change anymore. People in this forum can help you a great deal but they will not be able to give you certainty as to what your way will look like!

Hi Jualalonso,

I have been following your posts on this forum as well as the MIF.

I would really like to know what is so very USEFUL about this question that it needs to be asked several times.

What does it tell you about your future if anybody on this forum has responded well to immunotherapy after targeted therapy. I guess you have gotten hooked onto certain statistics and now you want to find a proof of the opposite.

I am also stage IV, also on the Combo and will know tomorrow if I have failed it after weeks of pain in my chest. So believe me i can understand your situation.

We all want to k ow how long we can survive with this terrible illness. When I first found this forum I returned every few hours to find an answer to that. I believe this is what you are trying to do by reposting that same question over and over again.

the facts i know: most of the treatments are so new that they do not have any reliable long term figures on that. They just do not know why some people do not fail BRAF / Mek for several years and others after a few months. Some people have lived after getting Ipi for 3 months, others for over 10 years. Where am I going to be?

For me it helps to pray a lot because I think only god knows and will guide me on this horrible journey. If you do not believe in god then you will have to find a different way of coping with this desease. 

but one thing is clear: uncertainty about how you are going to be doing in a few days / weeks  / months is now part of your life and this will not change anymore. People in this forum can help you a great deal but they will not be able to give you certainty as to what your way will look like!

Hi Jualonse, I know that many of the people that try to help others on the forum,  first go and read the person's history and previous posts. First take the time to fill your history out, then secondly read old posts that talk about your interest area. Writing the same question different ways every few days shows your deep concern and need for answers!  We all understand that need!!!!  I come to the forum as a way to stay informed and when I can add something that I hope is positive. Many people have already given you great advice on your previous posts and I wish you best, the fact that things are stable for you today is great news. You should celebrate that fact!!!!! Ed

Hi Jualonse, I know that many of the people that try to help others on the forum,  first go and read the person's history and previous posts. First take the time to fill your history out, then secondly read old posts that talk about your interest area. Writing the same question different ways every few days shows your deep concern and need for answers!  We all understand that need!!!!  I come to the forum as a way to stay informed and when I can add something that I hope is positive. Many people have already given you great advice on your previous posts and I wish you best, the fact that things are stable for you today is great news. You should celebrate that fact!!!!! Ed

Hi Jualonse, I know that many of the people that try to help others on the forum,  first go and read the person's history and previous posts. First take the time to fill your history out, then secondly read old posts that talk about your interest area. Writing the same question different ways every few days shows your deep concern and need for answers!  We all understand that need!!!!  I come to the forum as a way to stay informed and when I can add something that I hope is positive. Many people have already given you great advice on your previous posts and I wish you best, the fact that things are stable for you today is great news. You should celebrate that fact!!!!! Ed

Jualonso,

This topic of sequencing targets therapies and immunotherapies was touched on in the 2nd presentation that I posted here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/live-online-seminar-today

It's a very technical presentation but I think it was toward the end of the presentation that they discuss the sequencing.

Jualonso,

This topic of sequencing targets therapies and immunotherapies was touched on in the 2nd presentation that I posted here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/live-online-seminar-today

It's a very technical presentation but I think it was toward the end of the presentation that they discuss the sequencing.

Jualonso,

This topic of sequencing targets therapies and immunotherapies was touched on in the 2nd presentation that I posted here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/live-online-seminar-today

It's a very technical presentation but I think it was toward the end of the presentation that they discuss the sequencing.