Not eligible for anti-PD1

I am in that trial and am very sorry that things did not work out for you. I hope you realize that your HLA typing was needed only because of the vaccine component….not for the anti-PD1 itself. I know that does you no good at this moment…but it does mean that there may be other anti-PD1 trials that you DO qualify for. Hang in there. I can’t honestly say that “it gets any easier” but you absolutely should NOT live every moment in fear! I am now 9 years post melanoma diagnosis, Stage IV melanoma for 35 months, and NED for more than 21 months. Live every day with as much joy and enthusiasm as possible. It’s not always easy, but NONE of us really knows what’s around the corner. Do we? Wishing you the very best, celeste.

I am in that trial and am very sorry that things did not work out for you. I hope you realize that your HLA typing was needed only because of the vaccine component….not for the anti-PD1 itself. I know that does you no good at this moment…but it does mean that there may be other anti-PD1 trials that you DO qualify for. Hang in there. I can’t honestly say that “it gets any easier” but you absolutely should NOT live every moment in fear! I am now 9 years post melanoma diagnosis, Stage IV melanoma for 35 months, and NED for more than 21 months. Live every day with as much joy and enthusiasm as possible. It’s not always easy, but NONE of us really knows what’s around the corner. Do we? Wishing you the very best, celeste.

I am in that trial and am very sorry that things did not work out for you. I hope you realize that your HLA typing was needed only because of the vaccine component….not for the anti-PD1 itself. I know that does you no good at this moment…but it does mean that there may be other anti-PD1 trials that you DO qualify for. Hang in there. I can’t honestly say that “it gets any easier” but you absolutely should NOT live every moment in fear! I am now 9 years post melanoma diagnosis, Stage IV melanoma for 35 months, and NED for more than 21 months. Live every day with as much joy and enthusiasm as possible. It’s not always easy, but NONE of us really knows what’s around the corner. Do we? Wishing you the very best, celeste.

I was in the Ib trial and was quick to respond at the lowest dosage in the trial.  I attempted to get Bristol-Meyers Squibb to put me on some kind of maintenance program beyond the two year duration of the trial: they rejected my request.  They had not provided for any maintenance therapy in the design of the trial and were concerned about the impact on progression-free and overall survival data. A subsequent trial did allow extended treatment for responders. They have also allowed reinduction for prior trial participants whose disease has progressed. I hope that they will consider the possibility of  a trial to look at a maintenance protocal: it seems to make financial sense. Given the recent history of the rejection of  expensive new  cancer drugs by national cost-effectiveness bodies, one must hope that when BMS is finally able to market anti-PD-1 it will establish a pricing structure that allows broad access around the world. Failure to do so will call into question the existing relationship between the public and private sectors  in pharmaceutical sector.

I was in the Ib trial and was quick to respond at the lowest dosage in the trial.  I attempted to get Bristol-Meyers Squibb to put me on some kind of maintenance program beyond the two year duration of the trial: they rejected my request.  They had not provided for any maintenance therapy in the design of the trial and were concerned about the impact on progression-free and overall survival data. A subsequent trial did allow extended treatment for responders. They have also allowed reinduction for prior trial participants whose disease has progressed. I hope that they will consider the possibility of  a trial to look at a maintenance protocal: it seems to make financial sense. Given the recent history of the rejection of  expensive new  cancer drugs by national cost-effectiveness bodies, one must hope that when BMS is finally able to market anti-PD-1 it will establish a pricing structure that allows broad access around the world. Failure to do so will call into question the existing relationship between the public and private sectors  in pharmaceutical sector.

I was in the Ib trial and was quick to respond at the lowest dosage in the trial.  I attempted to get Bristol-Meyers Squibb to put me on some kind of maintenance program beyond the two year duration of the trial: they rejected my request.  They had not provided for any maintenance therapy in the design of the trial and were concerned about the impact on progression-free and overall survival data. A subsequent trial did allow extended treatment for responders. They have also allowed reinduction for prior trial participants whose disease has progressed. I hope that they will consider the possibility of  a trial to look at a maintenance protocal: it seems to make financial sense. Given the recent history of the rejection of  expensive new  cancer drugs by national cost-effectiveness bodies, one must hope that when BMS is finally able to market anti-PD-1 it will establish a pricing structure that allows broad access around the world. Failure to do so will call into question the existing relationship between the public and private sectors  in pharmaceutical sector.

I am sorry that you didin't qualify for the PD-1 traial at Moffitt. But as Bubbles said, since the HLA typing only has to do with the non-PD-1 arm of the trial, the PD-1 itself might work for you if and when it is approved. There are so many promising new treatments in the pipeline. We all just hope they will hurry up about it!

 

Your comment about the roller coaster of emotions and the uncertainty of a Stage IV diagnosis helps me a lot. Thank you.

It's hard enough for me as a caregiver to deal with the medical and emotional complexities; I can't imagine what it must be like for the patient. I think that the most important thing I have gained from this forum is some small understanding of how so many of you folks are able to carry on and even thrive. I see people who somehow manage to get their head around the idea that there is not (yet) any cure for this disease, but it's not a death sentence, either. They somehow learn to view melanoma as a chronic disease that waxes and wanes and evolves. It has to be managed, just like chronic kidney failure or cardiac problems. A surgery here resolves some symptoms and results in several more months (years?) of good life. A new medication there resolves other symptoms and results in several more months (years?) of good life. And the next thing you know, someone who was originally given less than a year to live is NED for 3 or 4 years and is planning to dance at their daughter's wedding.  No, not everyone has such a good outcome. But there are enough success stories here on the forum to really inspire me to keep trying to get the best care I can for my loved one for as long as he wants me to. It ain't over until it's over.

I am sorry that you didin't qualify for the PD-1 traial at Moffitt. But as Bubbles said, since the HLA typing only has to do with the non-PD-1 arm of the trial, the PD-1 itself might work for you if and when it is approved. There are so many promising new treatments in the pipeline. We all just hope they will hurry up about it!

 

Your comment about the roller coaster of emotions and the uncertainty of a Stage IV diagnosis helps me a lot. Thank you.

It's hard enough for me as a caregiver to deal with the medical and emotional complexities; I can't imagine what it must be like for the patient. I think that the most important thing I have gained from this forum is some small understanding of how so many of you folks are able to carry on and even thrive. I see people who somehow manage to get their head around the idea that there is not (yet) any cure for this disease, but it's not a death sentence, either. They somehow learn to view melanoma as a chronic disease that waxes and wanes and evolves. It has to be managed, just like chronic kidney failure or cardiac problems. A surgery here resolves some symptoms and results in several more months (years?) of good life. A new medication there resolves other symptoms and results in several more months (years?) of good life. And the next thing you know, someone who was originally given less than a year to live is NED for 3 or 4 years and is planning to dance at their daughter's wedding.  No, not everyone has such a good outcome. But there are enough success stories here on the forum to really inspire me to keep trying to get the best care I can for my loved one for as long as he wants me to. It ain't over until it's over.

I am sorry that you didin't qualify for the PD-1 traial at Moffitt. But as Bubbles said, since the HLA typing only has to do with the non-PD-1 arm of the trial, the PD-1 itself might work for you if and when it is approved. There are so many promising new treatments in the pipeline. We all just hope they will hurry up about it!

 

Your comment about the roller coaster of emotions and the uncertainty of a Stage IV diagnosis helps me a lot. Thank you.

It's hard enough for me as a caregiver to deal with the medical and emotional complexities; I can't imagine what it must be like for the patient. I think that the most important thing I have gained from this forum is some small understanding of how so many of you folks are able to carry on and even thrive. I see people who somehow manage to get their head around the idea that there is not (yet) any cure for this disease, but it's not a death sentence, either. They somehow learn to view melanoma as a chronic disease that waxes and wanes and evolves. It has to be managed, just like chronic kidney failure or cardiac problems. A surgery here resolves some symptoms and results in several more months (years?) of good life. A new medication there resolves other symptoms and results in several more months (years?) of good life. And the next thing you know, someone who was originally given less than a year to live is NED for 3 or 4 years and is planning to dance at their daughter's wedding.  No, not everyone has such a good outcome. But there are enough success stories here on the forum to really inspire me to keep trying to get the best care I can for my loved one for as long as he wants me to. It ain't over until it's over.

Just another thought for you, Frank. If you check my blog you will find a list of at least some of the trials ongoing at Moffitt. I was told just last week that they are still recruiting for a trial with Merck’s anti-PD1 product. There are also arms of my trial that are not combining the BMS anti-PD1 product with vaccines. Both of these options should negate the need for particular HLA typing. Of course, I do not know the particulars of your case, nor do I know what slots remain available and what you are interested in. But, I wish you a beautiful weekend. Yours, c

Just another thought for you, Frank. If you check my blog you will find a list of at least some of the trials ongoing at Moffitt. I was told just last week that they are still recruiting for a trial with Merck’s anti-PD1 product. There are also arms of my trial that are not combining the BMS anti-PD1 product with vaccines. Both of these options should negate the need for particular HLA typing. Of course, I do not know the particulars of your case, nor do I know what slots remain available and what you are interested in. But, I wish you a beautiful weekend. Yours, c

Just another thought for you, Frank. If you check my blog you will find a list of at least some of the trials ongoing at Moffitt. I was told just last week that they are still recruiting for a trial with Merck’s anti-PD1 product. There are also arms of my trial that are not combining the BMS anti-PD1 product with vaccines. Both of these options should negate the need for particular HLA typing. Of course, I do not know the particulars of your case, nor do I know what slots remain available and what you are interested in. But, I wish you a beautiful weekend. Yours, c

Hi Frank,   I am in a non-vaccine arm of the trial at Moffitt and I am not NED.  I do not live in fear. What the hell good would that do?  Be at peace knowing that there are many of us are getting better in trials teaching the researchers what works and what doesn't.  So if you do get a recurrence (slap my mouth for even thinking that!) you will get something that really helps.

Dan

Hi Frank,   I am in a non-vaccine arm of the trial at Moffitt and I am not NED.  I do not live in fear. What the hell good would that do?  Be at peace knowing that there are many of us are getting better in trials teaching the researchers what works and what doesn't.  So if you do get a recurrence (slap my mouth for even thinking that!) you will get something that really helps.

Dan

Hi Frank,   I am in a non-vaccine arm of the trial at Moffitt and I am not NED.  I do not live in fear. What the hell good would that do?  Be at peace knowing that there are many of us are getting better in trials teaching the researchers what works and what doesn't.  So if you do get a recurrence (slap my mouth for even thinking that!) you will get something that really helps.

Dan