Pd-1 reaponses

Do you keep taking PD-1, or is it a long-lasting effect?

Do you keep taking PD-1, or is it a long-lasting effect?

Do you keep taking PD-1, or is it a long-lasting effect?

I am still on PD-1.  Originally they signed me up for 2 years.  Then after a year on it, they changed the contract to no end date.   And we discussed my options with the doctors again last week after my clean scan.

The same 3 options still apply for me.  1.  I can just stay the course and remain on treatment since I am doing so well.  2.  I can have surgery to remove that bad node that was so aggressive in the beginning.  They think it is dead and just has scar tissue on it and therefore it will never go down to a normal sized node.  But with that surgery, they would take out several other nodes in that area, which would likely cause drainage problems with my right arm and arm pit.  And if I had that surgery, I would be off the PD-1 as well.   3.  Just come off treatment and see what happens.  The only problem with that is that if I come off of treatment and the cancer does come back, I have to adhere to the FDA guidelines and go through all their steps and try and fail Ipi first before getting Keytruda again.

So right now I have opted to just stay the course and continue treatment.  I struggle with the right decision often though.  I am thinking I should just keep on treatment for a while longer and then maybe come off it to see what happens.    But I do know that I am avoiding surgery as long as possible because I really don't want to deal with drainage issues in my arm.

Laurie

I am still on PD-1.  Originally they signed me up for 2 years.  Then after a year on it, they changed the contract to no end date.   And we discussed my options with the doctors again last week after my clean scan.

The same 3 options still apply for me.  1.  I can just stay the course and remain on treatment since I am doing so well.  2.  I can have surgery to remove that bad node that was so aggressive in the beginning.  They think it is dead and just has scar tissue on it and therefore it will never go down to a normal sized node.  But with that surgery, they would take out several other nodes in that area, which would likely cause drainage problems with my right arm and arm pit.  And if I had that surgery, I would be off the PD-1 as well.   3.  Just come off treatment and see what happens.  The only problem with that is that if I come off of treatment and the cancer does come back, I have to adhere to the FDA guidelines and go through all their steps and try and fail Ipi first before getting Keytruda again.

So right now I have opted to just stay the course and continue treatment.  I struggle with the right decision often though.  I am thinking I should just keep on treatment for a while longer and then maybe come off it to see what happens.    But I do know that I am avoiding surgery as long as possible because I really don't want to deal with drainage issues in my arm.

Laurie

I am still on PD-1.  Originally they signed me up for 2 years.  Then after a year on it, they changed the contract to no end date.   And we discussed my options with the doctors again last week after my clean scan.

The same 3 options still apply for me.  1.  I can just stay the course and remain on treatment since I am doing so well.  2.  I can have surgery to remove that bad node that was so aggressive in the beginning.  They think it is dead and just has scar tissue on it and therefore it will never go down to a normal sized node.  But with that surgery, they would take out several other nodes in that area, which would likely cause drainage problems with my right arm and arm pit.  And if I had that surgery, I would be off the PD-1 as well.   3.  Just come off treatment and see what happens.  The only problem with that is that if I come off of treatment and the cancer does come back, I have to adhere to the FDA guidelines and go through all their steps and try and fail Ipi first before getting Keytruda again.

So right now I have opted to just stay the course and continue treatment.  I struggle with the right decision often though.  I am thinking I should just keep on treatment for a while longer and then maybe come off it to see what happens.    But I do know that I am avoiding surgery as long as possible because I really don't want to deal with drainage issues in my arm.

Laurie

Laurie,

Not that you asked but I think I'd be doing the same thing if I was in your shoes (and I may be in your shoes in the not too distant future).  I might be more apt to come off the trial if a PD-1 drug was available without the failure stipulations or I was experiencing negative quality of life side effects or the data was more mature and indicated patients didn't relapse.  For what it's worth I think you're making a good decision.

Brian

Laurie,

Not that you asked but I think I'd be doing the same thing if I was in your shoes (and I may be in your shoes in the not too distant future).  I might be more apt to come off the trial if a PD-1 drug was available without the failure stipulations or I was experiencing negative quality of life side effects or the data was more mature and indicated patients didn't relapse.  For what it's worth I think you're making a good decision.

Brian

Laurie,

Not that you asked but I think I'd be doing the same thing if I was in your shoes (and I may be in your shoes in the not too distant future).  I might be more apt to come off the trial if a PD-1 drug was available without the failure stipulations or I was experiencing negative quality of life side effects or the data was more mature and indicated patients didn't relapse.  For what it's worth I think you're making a good decision.

Brian

Thanks Brian!  I do appreciate your thoughts…always.  I guess I sort of was asking what others would do…..knowing many of us are in the same boat and wondering the same things.  My doctor did mention that they are working on changing things in the future…to where if I came off the trial and ended up needing the Keytruda again…maybe I wouldn't have to even go through the Ipi to get Keytruda.  That is something they are working on.  I assume they are working on this especially for those of us that have only been on Keytruda and we know it has worked for us…so why make us try something else instead of going to the cocktail that has already proven to work. 

So that was another reason I thought it best that I just stay on the trial for now.  Wait a bit more time until things get ironed out a bit.  🙂   Laurie

Thanks Brian!  I do appreciate your thoughts…always.  I guess I sort of was asking what others would do…..knowing many of us are in the same boat and wondering the same things.  My doctor did mention that they are working on changing things in the future…to where if I came off the trial and ended up needing the Keytruda again…maybe I wouldn't have to even go through the Ipi to get Keytruda.  That is something they are working on.  I assume they are working on this especially for those of us that have only been on Keytruda and we know it has worked for us…so why make us try something else instead of going to the cocktail that has already proven to work. 

So that was another reason I thought it best that I just stay on the trial for now.  Wait a bit more time until things get ironed out a bit.  🙂   Laurie

Thanks Brian!  I do appreciate your thoughts…always.  I guess I sort of was asking what others would do…..knowing many of us are in the same boat and wondering the same things.  My doctor did mention that they are working on changing things in the future…to where if I came off the trial and ended up needing the Keytruda again…maybe I wouldn't have to even go through the Ipi to get Keytruda.  That is something they are working on.  I assume they are working on this especially for those of us that have only been on Keytruda and we know it has worked for us…so why make us try something else instead of going to the cocktail that has already proven to work. 

So that was another reason I thought it best that I just stay on the trial for now.  Wait a bit more time until things get ironed out a bit.  🙂   Laurie