PET Scan results and many questions

Hi Annie, you are asking questions way over my pay grade but I will try to give you some input. Question# 1 , well it all depends, if you are getting Nivo then you can keep getting treatments up until there is progression. At least that is how the trials have been set up. We are kind of at a point where the Science has not caught up with what patients are experiencing. My understanding of how the Pd-1 drugs were approved in the U.S.A. is that you keep getting them unless there is progression. The question that new trials will try to answer is when to stop. From a personal experience and my stand point, checkmate 067 the phase 3 trial of Ipi and Nivo monotherapies or ipi and Nivo combined, the  design of the trial is to keep giving the drugs until progression. This is where having access to a Melanoma specialist becomes of great advantage!!! When to stop targeted therapies so that you don't get to a point of tumor resistance is a tough question. I will leave that to others who have targeted therapy experience. The best survival data comes from the combination of Ipi and Nivo, if you have the ability to get the combination then go for it. If it is a matter of fast growing tumors then targeted therapies seems to be the avenue than many take, to get things under control. I hope that others will be able to give you more information. Best wishes!!!! Ed 

Hi Annie, you are asking questions way over my pay grade but I will try to give you some input. Question# 1 , well it all depends, if you are getting Nivo then you can keep getting treatments up until there is progression. At least that is how the trials have been set up. We are kind of at a point where the Science has not caught up with what patients are experiencing. My understanding of how the Pd-1 drugs were approved in the U.S.A. is that you keep getting them unless there is progression. The question that new trials will try to answer is when to stop. From a personal experience and my stand point, checkmate 067 the phase 3 trial of Ipi and Nivo monotherapies or ipi and Nivo combined, the  design of the trial is to keep giving the drugs until progression. This is where having access to a Melanoma specialist becomes of great advantage!!! When to stop targeted therapies so that you don't get to a point of tumor resistance is a tough question. I will leave that to others who have targeted therapy experience. The best survival data comes from the combination of Ipi and Nivo, if you have the ability to get the combination then go for it. If it is a matter of fast growing tumors then targeted therapies seems to be the avenue than many take, to get things under control. I hope that others will be able to give you more information. Best wishes!!!! Ed 

Hi Annie, you are asking questions way over my pay grade but I will try to give you some input. Question# 1 , well it all depends, if you are getting Nivo then you can keep getting treatments up until there is progression. At least that is how the trials have been set up. We are kind of at a point where the Science has not caught up with what patients are experiencing. My understanding of how the Pd-1 drugs were approved in the U.S.A. is that you keep getting them unless there is progression. The question that new trials will try to answer is when to stop. From a personal experience and my stand point, checkmate 067 the phase 3 trial of Ipi and Nivo monotherapies or ipi and Nivo combined, the  design of the trial is to keep giving the drugs until progression. This is where having access to a Melanoma specialist becomes of great advantage!!! When to stop targeted therapies so that you don't get to a point of tumor resistance is a tough question. I will leave that to others who have targeted therapy experience. The best survival data comes from the combination of Ipi and Nivo, if you have the ability to get the combination then go for it. If it is a matter of fast growing tumors then targeted therapies seems to be the avenue than many take, to get things under control. I hope that others will be able to give you more information. Best wishes!!!! Ed 

There has been evidence of radiation providing an abscopal effect when followed by Opdivo I believe.  Basically the radiation just prior to immunotherapy can have an additive effect.  Melanoma also continues to mutate and if you wait until you have a heavier tumor burden, you increase the likelyhood that some of those new mets are resistant to drug therapy and it is better to hit it hard when you can rather than wait to use it later.

I asked the same questions to my doctors when I advanced to stage IV in 2010, and there was no answer at the time.  They are still researching what order and combinations have the best success.

IMHO, I woldn't wait passively because if and when it comes back, who says you will still be a responder by then.  Get a second opinion and look at some of the articles that were presented at the latest ASCO meeting this summer.

Just food for thought.

There has been evidence of radiation providing an abscopal effect when followed by Opdivo I believe.  Basically the radiation just prior to immunotherapy can have an additive effect.  Melanoma also continues to mutate and if you wait until you have a heavier tumor burden, you increase the likelyhood that some of those new mets are resistant to drug therapy and it is better to hit it hard when you can rather than wait to use it later.

I asked the same questions to my doctors when I advanced to stage IV in 2010, and there was no answer at the time.  They are still researching what order and combinations have the best success.

IMHO, I woldn't wait passively because if and when it comes back, who says you will still be a responder by then.  Get a second opinion and look at some of the articles that were presented at the latest ASCO meeting this summer.

Just food for thought.

There has been evidence of radiation providing an abscopal effect when followed by Opdivo I believe.  Basically the radiation just prior to immunotherapy can have an additive effect.  Melanoma also continues to mutate and if you wait until you have a heavier tumor burden, you increase the likelyhood that some of those new mets are resistant to drug therapy and it is better to hit it hard when you can rather than wait to use it later.

I asked the same questions to my doctors when I advanced to stage IV in 2010, and there was no answer at the time.  They are still researching what order and combinations have the best success.

IMHO, I woldn't wait passively because if and when it comes back, who says you will still be a responder by then.  Get a second opinion and look at some of the articles that were presented at the latest ASCO meeting this summer.

Just food for thought.

Annie,

I'm not a doctor, but I take issue with the oncologist who said, it may be premature to start with Opdivo, and that it would be a waste. One question I have is, just how much cushion does one have to "waste" in the situation with brain mets. In other words how safety factor does one have in this situation to "wait and see". This use of anti-PD1 would be called "adjuvant therapy" I think, i.e. without evidence of active melanoma. But my feeling about myself those years ago was, how realistic is it to believe there's not a shred of melanoma in my brain after being treated for 4 active tumors? I was put on Yervoy in that "adjuvant"-like situation shortly following Gamma Knife and craniotomy. But I didn't feel like it was adjuvant at all in my case. I am lucky enough not to have had a recurrence in the brain since, although I have had it elsewhere. I guess I would say years ago, my oncologist felt it was worth it to "waste" a therapy on me in my unique-to-me situation. There are myriad differences in every situation/"case", not the least being the amount of knowledge/experience that's transpired since I was treated.

When I've been in doubt, I've asked for a second opinion (done that twice).

I don't have any answers to your 4 questions, other than I've read that the experts don't know the answer to #1, at least with anti-PD1. I read they explicitly don't have a good answer yet on how long to treat with it. My clinical trial's treatment phase with anti-PD1 is 96 weeks.

I hope things go well with your father, including his appointments next week.

Annie,

I'm not a doctor, but I take issue with the oncologist who said, it may be premature to start with Opdivo, and that it would be a waste. One question I have is, just how much cushion does one have to "waste" in the situation with brain mets. In other words how safety factor does one have in this situation to "wait and see". This use of anti-PD1 would be called "adjuvant therapy" I think, i.e. without evidence of active melanoma. But my feeling about myself those years ago was, how realistic is it to believe there's not a shred of melanoma in my brain after being treated for 4 active tumors? I was put on Yervoy in that "adjuvant"-like situation shortly following Gamma Knife and craniotomy. But I didn't feel like it was adjuvant at all in my case. I am lucky enough not to have had a recurrence in the brain since, although I have had it elsewhere. I guess I would say years ago, my oncologist felt it was worth it to "waste" a therapy on me in my unique-to-me situation. There are myriad differences in every situation/"case", not the least being the amount of knowledge/experience that's transpired since I was treated.

When I've been in doubt, I've asked for a second opinion (done that twice).

I don't have any answers to your 4 questions, other than I've read that the experts don't know the answer to #1, at least with anti-PD1. I read they explicitly don't have a good answer yet on how long to treat with it. My clinical trial's treatment phase with anti-PD1 is 96 weeks.

I hope things go well with your father, including his appointments next week.

Annie,

I'm not a doctor, but I take issue with the oncologist who said, it may be premature to start with Opdivo, and that it would be a waste. One question I have is, just how much cushion does one have to "waste" in the situation with brain mets. In other words how safety factor does one have in this situation to "wait and see". This use of anti-PD1 would be called "adjuvant therapy" I think, i.e. without evidence of active melanoma. But my feeling about myself those years ago was, how realistic is it to believe there's not a shred of melanoma in my brain after being treated for 4 active tumors? I was put on Yervoy in that "adjuvant"-like situation shortly following Gamma Knife and craniotomy. But I didn't feel like it was adjuvant at all in my case. I am lucky enough not to have had a recurrence in the brain since, although I have had it elsewhere. I guess I would say years ago, my oncologist felt it was worth it to "waste" a therapy on me in my unique-to-me situation. There are myriad differences in every situation/"case", not the least being the amount of knowledge/experience that's transpired since I was treated.

When I've been in doubt, I've asked for a second opinion (done that twice).

I don't have any answers to your 4 questions, other than I've read that the experts don't know the answer to #1, at least with anti-PD1. I read they explicitly don't have a good answer yet on how long to treat with it. My clinical trial's treatment phase with anti-PD1 is 96 weeks.

I hope things go well with your father, including his appointments next week.

Hi Annie,

While everything here is speculation from a non-Dr., It seems most of these questions, have been discussed here on this forum at one time or another.  I agree with everyone about #1.  Asking the same question myself as I enter my 9th month on the ipi/nivo regime.  As a mixed responder, its particularly confusing.  As for #2 it seems BRAF inhibitors are best used to knock large tumor loads down quickly, in preparation for immunotherapy.  There are a mighty few who have had long-term response to BRAF inhibitors but generally it should be considered a short-term fix.  As for going back on them again later, I think its unclear but possible, as with everything about mel treatments, individual results vary wildly.  #3 Zelboraf alone kicked my large tumor load to the curb in very short order, but when I progressed (quickly) the TAK/MEK had more staying power, but did little to reduce tumor load, it just kept me stable for a while.  Again, #2 applies, results may vary.  As for #4 I think the trigger for switching therapies tends to simply be progression.  I think in the language of insurance coverage, that is their requirement to move to the next therapy and perhaps the idea of as long as something is working, why change?  I think trying to anticipate when the BRAF inhibitors are going to stop working would require a leap of faith, barring any evidence of progression.  This is a tough battle with so much varied individual responses that trying to establish any rules whatsoever if futile.  You have to relay on experts, and make the best decisions you can for yourself.

Gary

Hi Annie,

While everything here is speculation from a non-Dr., It seems most of these questions, have been discussed here on this forum at one time or another.  I agree with everyone about #1.  Asking the same question myself as I enter my 9th month on the ipi/nivo regime.  As a mixed responder, its particularly confusing.  As for #2 it seems BRAF inhibitors are best used to knock large tumor loads down quickly, in preparation for immunotherapy.  There are a mighty few who have had long-term response to BRAF inhibitors but generally it should be considered a short-term fix.  As for going back on them again later, I think its unclear but possible, as with everything about mel treatments, individual results vary wildly.  #3 Zelboraf alone kicked my large tumor load to the curb in very short order, but when I progressed (quickly) the TAK/MEK had more staying power, but did little to reduce tumor load, it just kept me stable for a while.  Again, #2 applies, results may vary.  As for #4 I think the trigger for switching therapies tends to simply be progression.  I think in the language of insurance coverage, that is their requirement to move to the next therapy and perhaps the idea of as long as something is working, why change?  I think trying to anticipate when the BRAF inhibitors are going to stop working would require a leap of faith, barring any evidence of progression.  This is a tough battle with so much varied individual responses that trying to establish any rules whatsoever if futile.  You have to relay on experts, and make the best decisions you can for yourself.

Gary

Hi Annie,

While everything here is speculation from a non-Dr., It seems most of these questions, have been discussed here on this forum at one time or another.  I agree with everyone about #1.  Asking the same question myself as I enter my 9th month on the ipi/nivo regime.  As a mixed responder, its particularly confusing.  As for #2 it seems BRAF inhibitors are best used to knock large tumor loads down quickly, in preparation for immunotherapy.  There are a mighty few who have had long-term response to BRAF inhibitors but generally it should be considered a short-term fix.  As for going back on them again later, I think its unclear but possible, as with everything about mel treatments, individual results vary wildly.  #3 Zelboraf alone kicked my large tumor load to the curb in very short order, but when I progressed (quickly) the TAK/MEK had more staying power, but did little to reduce tumor load, it just kept me stable for a while.  Again, #2 applies, results may vary.  As for #4 I think the trigger for switching therapies tends to simply be progression.  I think in the language of insurance coverage, that is their requirement to move to the next therapy and perhaps the idea of as long as something is working, why change?  I think trying to anticipate when the BRAF inhibitors are going to stop working would require a leap of faith, barring any evidence of progression.  This is a tough battle with so much varied individual responses that trying to establish any rules whatsoever if futile.  You have to relay on experts, and make the best decisions you can for yourself.

Gary