Ipilimimub / Nivolumab complete responder … what’s next ?

Hi Claus,

I can't really offer an answer or data for your question.  It is the latest of many million dollar ones related to anti-PD1 and I fear folks in your position (and mine) are too newly arrived to know the answer for sure.  If you are NED after treatment with anti-Pd1 or an anti-PD1 combo….how long do you need to take the med and what do you do if you stop and recur????  All I can tell you is that the folks in my Nivo trial (both arms…NED and unresected) took the product for only 2 1/2 years.  Dr. Weber (and others) have said many times that they don't think that patients need to take anti-PD1 for as long as folks are doing with Pembro/Keytruda.  However, exactly how long you SHOULD take it remains a little unclear.  That being said…this is the closest I have to an answer to your question….info out of ASCO addressing folks who progressed on or after anti-PD1 and then took ipi: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-nivo-and-pembro-after-failing.html

Clearly, this does not answer what happens to folks who progress on or after Pembro and switch to Nivo or vice versa. Or to your specific question…I once responded to Pembro or Nivo…will I re-respond if I recur later?  Some folks are in process in all these scenario's…perhaps they can give some insight …but as best as I can find…it is too early to tell.  Congrats on your current NED status!  That's great.  Best, celeste

Hi Claus,

I can't really offer an answer or data for your question.  It is the latest of many million dollar ones related to anti-PD1 and I fear folks in your position (and mine) are too newly arrived to know the answer for sure.  If you are NED after treatment with anti-Pd1 or an anti-PD1 combo….how long do you need to take the med and what do you do if you stop and recur????  All I can tell you is that the folks in my Nivo trial (both arms…NED and unresected) took the product for only 2 1/2 years.  Dr. Weber (and others) have said many times that they don't think that patients need to take anti-PD1 for as long as folks are doing with Pembro/Keytruda.  However, exactly how long you SHOULD take it remains a little unclear.  That being said…this is the closest I have to an answer to your question….info out of ASCO addressing folks who progressed on or after anti-PD1 and then took ipi: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-nivo-and-pembro-after-failing.html

Clearly, this does not answer what happens to folks who progress on or after Pembro and switch to Nivo or vice versa. Or to your specific question…I once responded to Pembro or Nivo…will I re-respond if I recur later?  Some folks are in process in all these scenario's…perhaps they can give some insight …but as best as I can find…it is too early to tell.  Congrats on your current NED status!  That's great.  Best, celeste

Hi Claus,

I can't really offer an answer or data for your question.  It is the latest of many million dollar ones related to anti-PD1 and I fear folks in your position (and mine) are too newly arrived to know the answer for sure.  If you are NED after treatment with anti-Pd1 or an anti-PD1 combo….how long do you need to take the med and what do you do if you stop and recur????  All I can tell you is that the folks in my Nivo trial (both arms…NED and unresected) took the product for only 2 1/2 years.  Dr. Weber (and others) have said many times that they don't think that patients need to take anti-PD1 for as long as folks are doing with Pembro/Keytruda.  However, exactly how long you SHOULD take it remains a little unclear.  That being said…this is the closest I have to an answer to your question….info out of ASCO addressing folks who progressed on or after anti-PD1 and then took ipi: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-nivo-and-pembro-after-failing.html

Clearly, this does not answer what happens to folks who progress on or after Pembro and switch to Nivo or vice versa. Or to your specific question…I once responded to Pembro or Nivo…will I re-respond if I recur later?  Some folks are in process in all these scenario's…perhaps they can give some insight …but as best as I can find…it is too early to tell.  Congrats on your current NED status!  That's great.  Best, celeste

Hi Claus, first I would like to congradulate you on your success. You are asking a great question that only a very small % of the trial have experienced and that is being (NED). I am in the partial responder group, and I have asked myself the same question with a small twist, what will happen at the end of 2 years when the trial stops? I know that Celeste likes to use the term "Ratties" but I consider myself to be a lab mouse, who is being kept alive by all powerful  BMS scientist. I think often about the new normal that has taken over my life, of treatments and scans and the question of "what is next?"  Have you asked your Oncologist what the BMS policy is towards stopping and then starting again if you need it. I am just guessing here, but I don't think they would go for it, the data that they are getting from the 945 of us in this study is powering the big pharma giant. If you break the signed agreement we all had to do at the beginning they probably would not let you back in. I am just guessing about this point!  I don't know what the access to these drugs are in your country but that would be something to think about as well. Another thing is how often you would be scanned to check for progression, here again I have been scaned regularly every 6 weeks for over 1 year on the study and then switched to every 3 months since. It gives me great information but again has the down side of lots of Ct scans and the risks!!! Wishing you the best !!!!  Ed

Hi Claus, first I would like to congradulate you on your success. You are asking a great question that only a very small % of the trial have experienced and that is being (NED). I am in the partial responder group, and I have asked myself the same question with a small twist, what will happen at the end of 2 years when the trial stops? I know that Celeste likes to use the term "Ratties" but I consider myself to be a lab mouse, who is being kept alive by all powerful  BMS scientist. I think often about the new normal that has taken over my life, of treatments and scans and the question of "what is next?"  Have you asked your Oncologist what the BMS policy is towards stopping and then starting again if you need it. I am just guessing here, but I don't think they would go for it, the data that they are getting from the 945 of us in this study is powering the big pharma giant. If you break the signed agreement we all had to do at the beginning they probably would not let you back in. I am just guessing about this point!  I don't know what the access to these drugs are in your country but that would be something to think about as well. Another thing is how often you would be scanned to check for progression, here again I have been scaned regularly every 6 weeks for over 1 year on the study and then switched to every 3 months since. It gives me great information but again has the down side of lots of Ct scans and the risks!!! Wishing you the best !!!!  Ed

Hi Claus, first I would like to congradulate you on your success. You are asking a great question that only a very small % of the trial have experienced and that is being (NED). I am in the partial responder group, and I have asked myself the same question with a small twist, what will happen at the end of 2 years when the trial stops? I know that Celeste likes to use the term "Ratties" but I consider myself to be a lab mouse, who is being kept alive by all powerful  BMS scientist. I think often about the new normal that has taken over my life, of treatments and scans and the question of "what is next?"  Have you asked your Oncologist what the BMS policy is towards stopping and then starting again if you need it. I am just guessing here, but I don't think they would go for it, the data that they are getting from the 945 of us in this study is powering the big pharma giant. If you break the signed agreement we all had to do at the beginning they probably would not let you back in. I am just guessing about this point!  I don't know what the access to these drugs are in your country but that would be something to think about as well. Another thing is how often you would be scanned to check for progression, here again I have been scaned regularly every 6 weeks for over 1 year on the study and then switched to every 3 months since. It gives me great information but again has the down side of lots of Ct scans and the risks!!! Wishing you the best !!!!  Ed