If keytruda is working will you most likely have years to live?

Hi Kerri, such great news about your son!!!!  How long Pd-1 drugs will work is a great question, the data from many of the trials is still being accumulated. The hope is that there will be a change to the immune system ,kind of like when we get immunization shots as a child. I listened to a pod cast by Dr. Jim Allison of M.D. Anderson on youtube, the title is "Immunotherapy: Unleashing immune system to attack Cancer."  It is about 30 min long and it features Dr. Pam Sharma and Dr.Jim Allison, 2 leading Melanoma Oncologists. Again, great to hear the great news about your son!!! Ed

Hi Kerri, such great news about your son!!!!  How long Pd-1 drugs will work is a great question, the data from many of the trials is still being accumulated. The hope is that there will be a change to the immune system ,kind of like when we get immunization shots as a child. I listened to a pod cast by Dr. Jim Allison of M.D. Anderson on youtube, the title is "Immunotherapy: Unleashing immune system to attack Cancer."  It is about 30 min long and it features Dr. Pam Sharma and Dr.Jim Allison, 2 leading Melanoma Oncologists. Again, great to hear the great news about your son!!! Ed

Hi Kerri, such great news about your son!!!!  How long Pd-1 drugs will work is a great question, the data from many of the trials is still being accumulated. The hope is that there will be a change to the immune system ,kind of like when we get immunization shots as a child. I listened to a pod cast by Dr. Jim Allison of M.D. Anderson on youtube, the title is "Immunotherapy: Unleashing immune system to attack Cancer."  It is about 30 min long and it features Dr. Pam Sharma and Dr.Jim Allison, 2 leading Melanoma Oncologists. Again, great to hear the great news about your son!!! Ed

Hi Kerri,

You shared a bit of your son's story on my post about my most recent scan, and what Keytruda is doing for me. I'm so glad that things are going well for him.

The thing that I find most encouraging is that, unlike Yervoy (if I remember right) where the responses of all those who were partial repsonders had an endpoint that was only a matter of months from the end of treatment, responses to Keytruda were ongoing in some patients many months later, and had not yet reached an endpoint.

Dr. Sharfman at Johns Hopkins told me last year, shortly after Keytruda had been approved, that he feels the PD1's offer the most promise for durable responses. My local oncologist, Dr. Melnyk, who has been involved in melanoma research in the past, told me that she thinks Keytruda may turn out to be the "miracle drug" that can actually cure some people of melanoma. We are fortunate to be living in, and receiving treatment in, these exciting times where it seems that progress against this disease is being made literally every day!

All my best to you and your son.

-Bill

Hi Kerri,

You shared a bit of your son's story on my post about my most recent scan, and what Keytruda is doing for me. I'm so glad that things are going well for him.

The thing that I find most encouraging is that, unlike Yervoy (if I remember right) where the responses of all those who were partial repsonders had an endpoint that was only a matter of months from the end of treatment, responses to Keytruda were ongoing in some patients many months later, and had not yet reached an endpoint.

Dr. Sharfman at Johns Hopkins told me last year, shortly after Keytruda had been approved, that he feels the PD1's offer the most promise for durable responses. My local oncologist, Dr. Melnyk, who has been involved in melanoma research in the past, told me that she thinks Keytruda may turn out to be the "miracle drug" that can actually cure some people of melanoma. We are fortunate to be living in, and receiving treatment in, these exciting times where it seems that progress against this disease is being made literally every day!

All my best to you and your son.

-Bill

Hi Kerri,

You shared a bit of your son's story on my post about my most recent scan, and what Keytruda is doing for me. I'm so glad that things are going well for him.

The thing that I find most encouraging is that, unlike Yervoy (if I remember right) where the responses of all those who were partial repsonders had an endpoint that was only a matter of months from the end of treatment, responses to Keytruda were ongoing in some patients many months later, and had not yet reached an endpoint.

Dr. Sharfman at Johns Hopkins told me last year, shortly after Keytruda had been approved, that he feels the PD1's offer the most promise for durable responses. My local oncologist, Dr. Melnyk, who has been involved in melanoma research in the past, told me that she thinks Keytruda may turn out to be the "miracle drug" that can actually cure some people of melanoma. We are fortunate to be living in, and receiving treatment in, these exciting times where it seems that progress against this disease is being made literally every day!

All my best to you and your son.

-Bill

Kerri,

That is such awesome news on Jake.  My heart goes out for what you've been through.  Through my whole ordeal I have said repeatedly, "thank God it's me dealing with something like this and not my kids." 

The durability question is one many of us have.  The main reason we just don't know the answers yet is because the drug hasn't been around long enough.  I think we do have reason to be optimistic.  I had a consult with Dr. Weber from Moffitt a couple months ago.  He informed me that on his first nivo trial the 15 patients that responded well are still going strong.  I think they are about 3 to 4 years since finishing their treatments.  None of them have had a recurrence since stopping treatment.  I think another thing you can look at and have optimism is the survival curve for Ipi.  The survival curve gets amazingly flat at the two year mark meaning that if a patients makes it to two years they are can just about be assured that melanoma isn't going to get them.  Those curves go out 10+ years now.  I think it's not unreasoable to expect the survival curve of the Anti-Pd1s to be just as good if not better than Ipi.

Best of luck to you guys.  I'm so glad Jake is back to enjoying life as an 18 year old and not a cancer patient.

Brian

Kerri,

That is such awesome news on Jake.  My heart goes out for what you've been through.  Through my whole ordeal I have said repeatedly, "thank God it's me dealing with something like this and not my kids." 

The durability question is one many of us have.  The main reason we just don't know the answers yet is because the drug hasn't been around long enough.  I think we do have reason to be optimistic.  I had a consult with Dr. Weber from Moffitt a couple months ago.  He informed me that on his first nivo trial the 15 patients that responded well are still going strong.  I think they are about 3 to 4 years since finishing their treatments.  None of them have had a recurrence since stopping treatment.  I think another thing you can look at and have optimism is the survival curve for Ipi.  The survival curve gets amazingly flat at the two year mark meaning that if a patients makes it to two years they are can just about be assured that melanoma isn't going to get them.  Those curves go out 10+ years now.  I think it's not unreasoable to expect the survival curve of the Anti-Pd1s to be just as good if not better than Ipi.

Best of luck to you guys.  I'm so glad Jake is back to enjoying life as an 18 year old and not a cancer patient.

Brian

Kerri,

That is such awesome news on Jake.  My heart goes out for what you've been through.  Through my whole ordeal I have said repeatedly, "thank God it's me dealing with something like this and not my kids." 

The durability question is one many of us have.  The main reason we just don't know the answers yet is because the drug hasn't been around long enough.  I think we do have reason to be optimistic.  I had a consult with Dr. Weber from Moffitt a couple months ago.  He informed me that on his first nivo trial the 15 patients that responded well are still going strong.  I think they are about 3 to 4 years since finishing their treatments.  None of them have had a recurrence since stopping treatment.  I think another thing you can look at and have optimism is the survival curve for Ipi.  The survival curve gets amazingly flat at the two year mark meaning that if a patients makes it to two years they are can just about be assured that melanoma isn't going to get them.  Those curves go out 10+ years now.  I think it's not unreasoable to expect the survival curve of the Anti-Pd1s to be just as good if not better than Ipi.

Best of luck to you guys.  I'm so glad Jake is back to enjoying life as an 18 year old and not a cancer patient.

Brian

I've also wondered about the durability of the response.  I think ET's oncologist is quite cautious in many ways.  He cautions that we may not want to pull out the big guns (checkpoint blockade drugs) unless/until there is a recurrence or metastasis.  We asked for clarity.  He said there is no evidence that these drugs lose their efficacy with continued use, but that we simply haven't used them long enough to know.  Further, there may be insurance ramifications here in the US, particularly if a Republican administration tears down the insurance regulations that protect us under the ACA.  (I'm putting a lot of words in his mouth here.)

When reading the informed consent form for a pembro trial, I noted that Merck is analyzing blood samples to determine whether patients form antibodies to the drug (i.e. anti-antibody antibodies!).  Their only data in this regard may be found in the pembro prescribing information.  They say approx 90 patients were monitored for antibody formation, and none was found.  However, this is not a very large sample size, and it is reasonable that they are trying to cast a broader net to provide a more definitive answer.

I was chatting with Justin (Never Gonna Stop) about this issue as well.  He is an immunologist and a smart guy.  He didn't feel a melanoma could mutate around the PD-1L presentation issue in such a way that would attenuate the effectiveness of pembro, unless it might downregulate PD-1L expression or synthesizes a defective PD-1L.  Either of which would make it more vulnerable to attack from CD8 T cells, effectively doing pembro's job.  He also points out that pembro would still have disinhibiting effects on the immune system irrespective of PD-1L expression on the melanoma cells, so it would still have a clinical benefit.  I think what he says makes a lot of sense.

My takeaway from all of this is that the drug would probably remain effective (but might not, for reasons we cannot currently anticipate).  However, because this is an insanely expensive drug here in the US (although quite cheap in places like Australia), and because there is deep division in Washington over health care issues, future availability of the drug may hinge on whether we've had it before, what were the results, how much of it we've had, etc.  There could be caps on its usage.

I've also wondered about the durability of the response.  I think ET's oncologist is quite cautious in many ways.  He cautions that we may not want to pull out the big guns (checkpoint blockade drugs) unless/until there is a recurrence or metastasis.  We asked for clarity.  He said there is no evidence that these drugs lose their efficacy with continued use, but that we simply haven't used them long enough to know.  Further, there may be insurance ramifications here in the US, particularly if a Republican administration tears down the insurance regulations that protect us under the ACA.  (I'm putting a lot of words in his mouth here.)

When reading the informed consent form for a pembro trial, I noted that Merck is analyzing blood samples to determine whether patients form antibodies to the drug (i.e. anti-antibody antibodies!).  Their only data in this regard may be found in the pembro prescribing information.  They say approx 90 patients were monitored for antibody formation, and none was found.  However, this is not a very large sample size, and it is reasonable that they are trying to cast a broader net to provide a more definitive answer.

I was chatting with Justin (Never Gonna Stop) about this issue as well.  He is an immunologist and a smart guy.  He didn't feel a melanoma could mutate around the PD-1L presentation issue in such a way that would attenuate the effectiveness of pembro, unless it might downregulate PD-1L expression or synthesizes a defective PD-1L.  Either of which would make it more vulnerable to attack from CD8 T cells, effectively doing pembro's job.  He also points out that pembro would still have disinhibiting effects on the immune system irrespective of PD-1L expression on the melanoma cells, so it would still have a clinical benefit.  I think what he says makes a lot of sense.

My takeaway from all of this is that the drug would probably remain effective (but might not, for reasons we cannot currently anticipate).  However, because this is an insanely expensive drug here in the US (although quite cheap in places like Australia), and because there is deep division in Washington over health care issues, future availability of the drug may hinge on whether we've had it before, what were the results, how much of it we've had, etc.  There could be caps on its usage.

I've also wondered about the durability of the response.  I think ET's oncologist is quite cautious in many ways.  He cautions that we may not want to pull out the big guns (checkpoint blockade drugs) unless/until there is a recurrence or metastasis.  We asked for clarity.  He said there is no evidence that these drugs lose their efficacy with continued use, but that we simply haven't used them long enough to know.  Further, there may be insurance ramifications here in the US, particularly if a Republican administration tears down the insurance regulations that protect us under the ACA.  (I'm putting a lot of words in his mouth here.)

When reading the informed consent form for a pembro trial, I noted that Merck is analyzing blood samples to determine whether patients form antibodies to the drug (i.e. anti-antibody antibodies!).  Their only data in this regard may be found in the pembro prescribing information.  They say approx 90 patients were monitored for antibody formation, and none was found.  However, this is not a very large sample size, and it is reasonable that they are trying to cast a broader net to provide a more definitive answer.

I was chatting with Justin (Never Gonna Stop) about this issue as well.  He is an immunologist and a smart guy.  He didn't feel a melanoma could mutate around the PD-1L presentation issue in such a way that would attenuate the effectiveness of pembro, unless it might downregulate PD-1L expression or synthesizes a defective PD-1L.  Either of which would make it more vulnerable to attack from CD8 T cells, effectively doing pembro's job.  He also points out that pembro would still have disinhibiting effects on the immune system irrespective of PD-1L expression on the melanoma cells, so it would still have a clinical benefit.  I think what he says makes a lot of sense.

My takeaway from all of this is that the drug would probably remain effective (but might not, for reasons we cannot currently anticipate).  However, because this is an insanely expensive drug here in the US (although quite cheap in places like Australia), and because there is deep division in Washington over health care issues, future availability of the drug may hinge on whether we've had it before, what were the results, how much of it we've had, etc.  There could be caps on its usage.