Do PD-1’s continue to work?

Others are a lot more knowledgeable than me and can probably say it better. But it sounds like your father is having fantastic results. I just got a flyer in the mail from Mayo titled "Melanoma no more?". It is talking about Keytruda (Merck's PD-1). It is even bold enough to say it may be the "cure" for 25% of us with this stupid disease. They have a long way to go but at least this is a big step in the right direction. Some people here have been NED for years thanks to Nivolumab (BMS's PD-1). So yes PD-1 can have long lasting results. It works differently than the BRAF stuff which is primarly intended when the need is for quick response. So PD-1 and the other immunotherapies like ipi are designed to train your body to recognize and destroy your cancer. The original attempt with ipi was for the body to continue doing this long after you quit the medicine. It seems like PD-1 they are keeping most folks beyond the 2 years on it for now. Yes these can cross the brain barrier because they don't have to. It is your own immune system cells going in the brain taking care of the cancer like it is intended to do everywhere else too. I'm not as familiar with lirilumab except that I couldn't get into the trial for it. But since it's name ends in lumab I suspect it is probably another checkpoint inhibitor like PD-1 and ipi's CTLA-4. From what I've heard it is better than PD-1 alone and the side affects with both are pretty good. I'm hoping those results continue and they can get it approved soon. So I see PD-1 combined with a sensable diet and excercise for at least the people that respond to PD-1 to keep a person going for quite awhile. Basically my local doc describes it as having a chronic disease but it is manageable and way better than the alternative he used to face most of the time. Going beyond PD-1 there is Dr. Rosenberg's TIL treatment that is showing great results in melanoma and other cancers.

Dunno if that helps.

Artie

Others are a lot more knowledgeable than me and can probably say it better. But it sounds like your father is having fantastic results. I just got a flyer in the mail from Mayo titled "Melanoma no more?". It is talking about Keytruda (Merck's PD-1). It is even bold enough to say it may be the "cure" for 25% of us with this stupid disease. They have a long way to go but at least this is a big step in the right direction. Some people here have been NED for years thanks to Nivolumab (BMS's PD-1). So yes PD-1 can have long lasting results. It works differently than the BRAF stuff which is primarly intended when the need is for quick response. So PD-1 and the other immunotherapies like ipi are designed to train your body to recognize and destroy your cancer. The original attempt with ipi was for the body to continue doing this long after you quit the medicine. It seems like PD-1 they are keeping most folks beyond the 2 years on it for now. Yes these can cross the brain barrier because they don't have to. It is your own immune system cells going in the brain taking care of the cancer like it is intended to do everywhere else too. I'm not as familiar with lirilumab except that I couldn't get into the trial for it. But since it's name ends in lumab I suspect it is probably another checkpoint inhibitor like PD-1 and ipi's CTLA-4. From what I've heard it is better than PD-1 alone and the side affects with both are pretty good. I'm hoping those results continue and they can get it approved soon. So I see PD-1 combined with a sensable diet and excercise for at least the people that respond to PD-1 to keep a person going for quite awhile. Basically my local doc describes it as having a chronic disease but it is manageable and way better than the alternative he used to face most of the time. Going beyond PD-1 there is Dr. Rosenberg's TIL treatment that is showing great results in melanoma and other cancers.

Dunno if that helps.

Artie

Others are a lot more knowledgeable than me and can probably say it better. But it sounds like your father is having fantastic results. I just got a flyer in the mail from Mayo titled "Melanoma no more?". It is talking about Keytruda (Merck's PD-1). It is even bold enough to say it may be the "cure" for 25% of us with this stupid disease. They have a long way to go but at least this is a big step in the right direction. Some people here have been NED for years thanks to Nivolumab (BMS's PD-1). So yes PD-1 can have long lasting results. It works differently than the BRAF stuff which is primarly intended when the need is for quick response. So PD-1 and the other immunotherapies like ipi are designed to train your body to recognize and destroy your cancer. The original attempt with ipi was for the body to continue doing this long after you quit the medicine. It seems like PD-1 they are keeping most folks beyond the 2 years on it for now. Yes these can cross the brain barrier because they don't have to. It is your own immune system cells going in the brain taking care of the cancer like it is intended to do everywhere else too. I'm not as familiar with lirilumab except that I couldn't get into the trial for it. But since it's name ends in lumab I suspect it is probably another checkpoint inhibitor like PD-1 and ipi's CTLA-4. From what I've heard it is better than PD-1 alone and the side affects with both are pretty good. I'm hoping those results continue and they can get it approved soon. So I see PD-1 combined with a sensable diet and excercise for at least the people that respond to PD-1 to keep a person going for quite awhile. Basically my local doc describes it as having a chronic disease but it is manageable and way better than the alternative he used to face most of the time. Going beyond PD-1 there is Dr. Rosenberg's TIL treatment that is showing great results in melanoma and other cancers.

Dunno if that helps.

Artie

Hey Ashley,

So glad to hear your Dad is having great results.  It's nice to know there may be another combo out there with huge potential.  Your question of durability is a pretty hot topic right now and many of us on this board are wondering the same thing.  The question is not only how long will the response last but also is anti-PD1 drug going to be needed indefinitely to keep the response.  I think the data is beginning to indicate that for those who respond to anti-PD1 the results can be long term.  This was a small study of one of the first phase I trials but if you look at the 8th slide of this presentation the bottom left graph shows many of the melanoma responders are at the 2+ year mark and still going strong. 

http://tatcongress.org/wp-content/uploads/2014/05/140305-hodi.pdf

The question whether patients need anti-PD1 to maintain the reponse is still unknown.  Celeste (Bubbles) gets seen at Moffitt and she feels like the doctors down there think you don't need the drug to keep the results.  Laurie (sweetaugust) gets seen at Dana Farber and they seem to think that you do need the drug to maintain the results.  Time will tell I guess.  One thing that has been shown is patients who have stopped the drug and had a recurrence quickly had disease regression again when they restarted anti-PD1. 

Hope that helps.

Brian

Hey Ashley,

So glad to hear your Dad is having great results.  It's nice to know there may be another combo out there with huge potential.  Your question of durability is a pretty hot topic right now and many of us on this board are wondering the same thing.  The question is not only how long will the response last but also is anti-PD1 drug going to be needed indefinitely to keep the response.  I think the data is beginning to indicate that for those who respond to anti-PD1 the results can be long term.  This was a small study of one of the first phase I trials but if you look at the 8th slide of this presentation the bottom left graph shows many of the melanoma responders are at the 2+ year mark and still going strong. 

http://tatcongress.org/wp-content/uploads/2014/05/140305-hodi.pdf

The question whether patients need anti-PD1 to maintain the reponse is still unknown.  Celeste (Bubbles) gets seen at Moffitt and she feels like the doctors down there think you don't need the drug to keep the results.  Laurie (sweetaugust) gets seen at Dana Farber and they seem to think that you do need the drug to maintain the results.  Time will tell I guess.  One thing that has been shown is patients who have stopped the drug and had a recurrence quickly had disease regression again when they restarted anti-PD1. 

Hope that helps.

Brian

Hey Ashley,

So glad to hear your Dad is having great results.  It's nice to know there may be another combo out there with huge potential.  Your question of durability is a pretty hot topic right now and many of us on this board are wondering the same thing.  The question is not only how long will the response last but also is anti-PD1 drug going to be needed indefinitely to keep the response.  I think the data is beginning to indicate that for those who respond to anti-PD1 the results can be long term.  This was a small study of one of the first phase I trials but if you look at the 8th slide of this presentation the bottom left graph shows many of the melanoma responders are at the 2+ year mark and still going strong. 

http://tatcongress.org/wp-content/uploads/2014/05/140305-hodi.pdf

The question whether patients need anti-PD1 to maintain the reponse is still unknown.  Celeste (Bubbles) gets seen at Moffitt and she feels like the doctors down there think you don't need the drug to keep the results.  Laurie (sweetaugust) gets seen at Dana Farber and they seem to think that you do need the drug to maintain the results.  Time will tell I guess.  One thing that has been shown is patients who have stopped the drug and had a recurrence quickly had disease regression again when they restarted anti-PD1. 

Hope that helps.

Brian

Hi Ashley (Artie, Brian, and Joe!!!….gotta love my boys!),

Yes…immunotherapies from IL-2 to ipi to the anti-PD1 drugs…have the potential for a durable response.  See it from the big dogs in melanoma here!!!

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/review-of-immunotherapy-and-durable.html

IL-2 proved the case, as it were, in that, while few had a complete response (about 6%) some who did, have had responses out 90+ months!  Same thing with ipi….with only a 15%+ response rate…some of those who respond have durable responses…OFF MEDS…for 10+ years!!!  Anti-Pd1 drugs (Pembro…now Keytruda…and Nivo) are still a little young to know what is going to happen to us ratties in the end…but researchers feel there is every reason to believe at our 30-40% response rate…we will have a sizeable group who continue to have durable responses..over time…with NO continued meds.  The article noted in the post above addresses all these points.

In regard to myself….I am now 17 months post my last dose of Nivo.  49 months NED.  55 months Stage IV.  135 months post original melanoma diagnosis.  Weber (my onc at Moffitt in Tampa) has long contended that for both of the anti-PD1 drugs there is a finite point at which it will either help you or it won't. You will have maxed out its potential and reaped the good it will sow.  NOW…the tricky part:  We don't quite know when that exact quantity of dosing is.  My Nivo trial was set for 2 1/2 years and that's what all of us did. Folks at Moffitt have intimated that it was longer than it needed to be.  There are a great number of us…both in the NED and the unresected arms…who are doing very well.  If you are interested…my last data…toward middle/end of this post….is here:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html  Now…one other point….even when your response is "durable" to "some extent"….researchers have proven that repeated dosing with ipi as well as anti-PD1 can elicit a response AGAIN!  How long and how durable THAT response will be has yet to be determined…but that option is out there as well.

Finally, this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/10/anti-pd1-nivo-and-pembro-as-first-line.html

There is no way that the big dogs in melanoma would be saying that anti-PD1 would become a first line drug for melanoma if they didn't think that the responses would be good AND durable.

For what it's worth…I wish you all my best.  Celeste

Hi Ashley (Artie, Brian, and Joe!!!….gotta love my boys!),

Yes…immunotherapies from IL-2 to ipi to the anti-PD1 drugs…have the potential for a durable response.  See it from the big dogs in melanoma here!!!

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/review-of-immunotherapy-and-durable.html

IL-2 proved the case, as it were, in that, while few had a complete response (about 6%) some who did, have had responses out 90+ months!  Same thing with ipi….with only a 15%+ response rate…some of those who respond have durable responses…OFF MEDS…for 10+ years!!!  Anti-Pd1 drugs (Pembro…now Keytruda…and Nivo) are still a little young to know what is going to happen to us ratties in the end…but researchers feel there is every reason to believe at our 30-40% response rate…we will have a sizeable group who continue to have durable responses..over time…with NO continued meds.  The article noted in the post above addresses all these points.

In regard to myself….I am now 17 months post my last dose of Nivo.  49 months NED.  55 months Stage IV.  135 months post original melanoma diagnosis.  Weber (my onc at Moffitt in Tampa) has long contended that for both of the anti-PD1 drugs there is a finite point at which it will either help you or it won't. You will have maxed out its potential and reaped the good it will sow.  NOW…the tricky part:  We don't quite know when that exact quantity of dosing is.  My Nivo trial was set for 2 1/2 years and that's what all of us did. Folks at Moffitt have intimated that it was longer than it needed to be.  There are a great number of us…both in the NED and the unresected arms…who are doing very well.  If you are interested…my last data…toward middle/end of this post….is here:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html  Now…one other point….even when your response is "durable" to "some extent"….researchers have proven that repeated dosing with ipi as well as anti-PD1 can elicit a response AGAIN!  How long and how durable THAT response will be has yet to be determined…but that option is out there as well.

Finally, this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/10/anti-pd1-nivo-and-pembro-as-first-line.html

There is no way that the big dogs in melanoma would be saying that anti-PD1 would become a first line drug for melanoma if they didn't think that the responses would be good AND durable.

For what it's worth…I wish you all my best.  Celeste

Hi Ashley (Artie, Brian, and Joe!!!….gotta love my boys!),

Yes…immunotherapies from IL-2 to ipi to the anti-PD1 drugs…have the potential for a durable response.  See it from the big dogs in melanoma here!!!

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/review-of-immunotherapy-and-durable.html

IL-2 proved the case, as it were, in that, while few had a complete response (about 6%) some who did, have had responses out 90+ months!  Same thing with ipi….with only a 15%+ response rate…some of those who respond have durable responses…OFF MEDS…for 10+ years!!!  Anti-Pd1 drugs (Pembro…now Keytruda…and Nivo) are still a little young to know what is going to happen to us ratties in the end…but researchers feel there is every reason to believe at our 30-40% response rate…we will have a sizeable group who continue to have durable responses..over time…with NO continued meds.  The article noted in the post above addresses all these points.

In regard to myself….I am now 17 months post my last dose of Nivo.  49 months NED.  55 months Stage IV.  135 months post original melanoma diagnosis.  Weber (my onc at Moffitt in Tampa) has long contended that for both of the anti-PD1 drugs there is a finite point at which it will either help you or it won't. You will have maxed out its potential and reaped the good it will sow.  NOW…the tricky part:  We don't quite know when that exact quantity of dosing is.  My Nivo trial was set for 2 1/2 years and that's what all of us did. Folks at Moffitt have intimated that it was longer than it needed to be.  There are a great number of us…both in the NED and the unresected arms…who are doing very well.  If you are interested…my last data…toward middle/end of this post….is here:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html  Now…one other point….even when your response is "durable" to "some extent"….researchers have proven that repeated dosing with ipi as well as anti-PD1 can elicit a response AGAIN!  How long and how durable THAT response will be has yet to be determined…but that option is out there as well.

Finally, this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/10/anti-pd1-nivo-and-pembro-as-first-line.html

There is no way that the big dogs in melanoma would be saying that anti-PD1 would become a first line drug for melanoma if they didn't think that the responses would be good AND durable.

For what it's worth…I wish you all my best.  Celeste