Is Anti PD-1 working for me?

Hmm. So last weeks scan showed some tumors getting smaller and some staying the same and no new tumors according to the doc. Sounds like very good mixed results because it shows nothing growing and no new tumors. My first pd1 scan was also mixed results of about 19 tumors shrinking, 4 staying the same, and 7 growing and no new tumors.

However now you are having signs of new ones showing up which does not sound good to me and the bad one doubling in size which may or may not be good. By some getting smaller you are already having a response which seems to be expected with pd1 for responders anyway. They seem to do the first scan right before the 5th dose which sounds like it might be what they did.

Mine in my left shoulder is around 9cm by 8cm. Protudes like a hunch back. It actually is visibly measuring a little bigger now although it seems to change shape a lot. But they told me in my first scan although it is one of the ones growing the center is dead tissue. Like it is being destroyed from the inside out.

I remember one person's story who was on Merck's pd1 back in the early trial for it. The first scan showed everything shrinking except one tumor the size of a ping pong ball. Next scan it got bigger. Next scan bigger. Finally it was the size of a base ball and hanging out from the arm. Then suddenly it just shrank. The docs said it must have burst. It is now the size of a thumbnail and still shrinking.

Here's the link to my post from my first pd1 scan that has that story from laurie:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/merck-eap-pd1-pembro-first

So it is a tough decision whether to continue with PD1 or pull the trigger on TIL. My Mayo doc had me radiate 3 of the growing tumors. Then he wanted to re-scan the day after radiation but I was too weak to travel. My local doc is waiting the 6 weeks for the radiation to do it's work. So I will re-scan locally in early November. My Mayo doc is like if anything is growing I have to change treatments. My local doc is like the PD1 is working so stick with it. So 2 totally different view points from docs. Really it is up to us to decide and just go with what our gut is telling us. Right now I'm recovering from the radiation and getting stronger every day and starting to feel fairly good again. So I'm doing the wait and see what my next scan shows. If your gut is telling you need to do TIL now then do it or if staying with PD1 then do that. Just go with your gut instinct and don't look back.

Dunno if that helped any. Good luck to you for whatever you decide.

Artie

Hmm. So last weeks scan showed some tumors getting smaller and some staying the same and no new tumors according to the doc. Sounds like very good mixed results because it shows nothing growing and no new tumors. My first pd1 scan was also mixed results of about 19 tumors shrinking, 4 staying the same, and 7 growing and no new tumors.

However now you are having signs of new ones showing up which does not sound good to me and the bad one doubling in size which may or may not be good. By some getting smaller you are already having a response which seems to be expected with pd1 for responders anyway. They seem to do the first scan right before the 5th dose which sounds like it might be what they did.

Mine in my left shoulder is around 9cm by 8cm. Protudes like a hunch back. It actually is visibly measuring a little bigger now although it seems to change shape a lot. But they told me in my first scan although it is one of the ones growing the center is dead tissue. Like it is being destroyed from the inside out.

I remember one person's story who was on Merck's pd1 back in the early trial for it. The first scan showed everything shrinking except one tumor the size of a ping pong ball. Next scan it got bigger. Next scan bigger. Finally it was the size of a base ball and hanging out from the arm. Then suddenly it just shrank. The docs said it must have burst. It is now the size of a thumbnail and still shrinking.

Here's the link to my post from my first pd1 scan that has that story from laurie:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/merck-eap-pd1-pembro-first

So it is a tough decision whether to continue with PD1 or pull the trigger on TIL. My Mayo doc had me radiate 3 of the growing tumors. Then he wanted to re-scan the day after radiation but I was too weak to travel. My local doc is waiting the 6 weeks for the radiation to do it's work. So I will re-scan locally in early November. My Mayo doc is like if anything is growing I have to change treatments. My local doc is like the PD1 is working so stick with it. So 2 totally different view points from docs. Really it is up to us to decide and just go with what our gut is telling us. Right now I'm recovering from the radiation and getting stronger every day and starting to feel fairly good again. So I'm doing the wait and see what my next scan shows. If your gut is telling you need to do TIL now then do it or if staying with PD1 then do that. Just go with your gut instinct and don't look back.

Dunno if that helped any. Good luck to you for whatever you decide.

Artie

Hmm. So last weeks scan showed some tumors getting smaller and some staying the same and no new tumors according to the doc. Sounds like very good mixed results because it shows nothing growing and no new tumors. My first pd1 scan was also mixed results of about 19 tumors shrinking, 4 staying the same, and 7 growing and no new tumors.

However now you are having signs of new ones showing up which does not sound good to me and the bad one doubling in size which may or may not be good. By some getting smaller you are already having a response which seems to be expected with pd1 for responders anyway. They seem to do the first scan right before the 5th dose which sounds like it might be what they did.

Mine in my left shoulder is around 9cm by 8cm. Protudes like a hunch back. It actually is visibly measuring a little bigger now although it seems to change shape a lot. But they told me in my first scan although it is one of the ones growing the center is dead tissue. Like it is being destroyed from the inside out.

I remember one person's story who was on Merck's pd1 back in the early trial for it. The first scan showed everything shrinking except one tumor the size of a ping pong ball. Next scan it got bigger. Next scan bigger. Finally it was the size of a base ball and hanging out from the arm. Then suddenly it just shrank. The docs said it must have burst. It is now the size of a thumbnail and still shrinking.

Here's the link to my post from my first pd1 scan that has that story from laurie:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/merck-eap-pd1-pembro-first

So it is a tough decision whether to continue with PD1 or pull the trigger on TIL. My Mayo doc had me radiate 3 of the growing tumors. Then he wanted to re-scan the day after radiation but I was too weak to travel. My local doc is waiting the 6 weeks for the radiation to do it's work. So I will re-scan locally in early November. My Mayo doc is like if anything is growing I have to change treatments. My local doc is like the PD1 is working so stick with it. So 2 totally different view points from docs. Really it is up to us to decide and just go with what our gut is telling us. Right now I'm recovering from the radiation and getting stronger every day and starting to feel fairly good again. So I'm doing the wait and see what my next scan shows. If your gut is telling you need to do TIL now then do it or if staying with PD1 then do that. Just go with your gut instinct and don't look back.

Dunno if that helped any. Good luck to you for whatever you decide.

Artie

Here's a link to a study that was just forwarded to me today from a good friend.  I'm going to post it to Laurie's thread from earlier today as well but wanted to post it here for you and Art.  Basically it's a very small study about the reinduction of anti-PD1 drugs.  I wanted to point out to you two the melanoma patient's response in the study (3rd patient).  It's very interesting to read about her reponse and to click on the graph to see how the various tumors responded differently.  A very exciting thing was that she was taken off the drug but later on when it was reinduced she had a very good response.  I think the lesson learned here is even if you move on to TIL or another treatment doesn't mean you should completely forget about anti-PD1

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548952/

Brian

Here's a link to a study that was just forwarded to me today from a good friend.  I'm going to post it to Laurie's thread from earlier today as well but wanted to post it here for you and Art.  Basically it's a very small study about the reinduction of anti-PD1 drugs.  I wanted to point out to you two the melanoma patient's response in the study (3rd patient).  It's very interesting to read about her reponse and to click on the graph to see how the various tumors responded differently.  A very exciting thing was that she was taken off the drug but later on when it was reinduced she had a very good response.  I think the lesson learned here is even if you move on to TIL or another treatment doesn't mean you should completely forget about anti-PD1

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548952/

Brian

Here's a link to a study that was just forwarded to me today from a good friend.  I'm going to post it to Laurie's thread from earlier today as well but wanted to post it here for you and Art.  Basically it's a very small study about the reinduction of anti-PD1 drugs.  I wanted to point out to you two the melanoma patient's response in the study (3rd patient).  It's very interesting to read about her reponse and to click on the graph to see how the various tumors responded differently.  A very exciting thing was that she was taken off the drug but later on when it was reinduced she had a very good response.  I think the lesson learned here is even if you move on to TIL or another treatment doesn't mean you should completely forget about anti-PD1

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548952/

Brian