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PD-1 stop working???

Forums General Melanoma Community PD-1 stop working???

  • Post
    Ashley
    Participant

    I know I've asked a similar question before but my dad just had his scans and we get results on Monday…

    He had a great response from the first set of scans after starting a PD-1 and targeted therapy trial.  His LDH levels were very high at the beginning of melanoma diagnosis and begining of PD-1 trial, and they have continued to drop.  This has been a good sign so far for us, but just wondering…

    Has anyone been on PD-1 and had it work at first and then stop working?

Viewing 5 reply threads
  • Replies
      arthurjedi007
      Participant

      I remember reading about a lady a couple months ago who was on PD1 and they took her off the trial because all of a sudden she had new stuff show up and more than acceptable growth. I think it was the nivo pd1 but I could be wrong. She had been on it about 18 months and was doing good. She thought maybe since she went back to her old habbit of diet that could have affected it. Her question was about TIL and I believe she decided to go to MD Anderson for it. I haven't seen anything from her since.

      Basically you just need to get a plan B in place for him for the what if you ask about happens. I thought I had a good plan B with TIL until I found out how life threatening the treatment can be so I now have 2 other trials in mind. Fortunately I'm currently at mild growth with Keytruda. Not as good as my docs want but better than anything I had before it.

      Artie

       

      arthurjedi007
      Participant

      I remember reading about a lady a couple months ago who was on PD1 and they took her off the trial because all of a sudden she had new stuff show up and more than acceptable growth. I think it was the nivo pd1 but I could be wrong. She had been on it about 18 months and was doing good. She thought maybe since she went back to her old habbit of diet that could have affected it. Her question was about TIL and I believe she decided to go to MD Anderson for it. I haven't seen anything from her since.

      Basically you just need to get a plan B in place for him for the what if you ask about happens. I thought I had a good plan B with TIL until I found out how life threatening the treatment can be so I now have 2 other trials in mind. Fortunately I'm currently at mild growth with Keytruda. Not as good as my docs want but better than anything I had before it.

      Artie

       

      arthurjedi007
      Participant

      I remember reading about a lady a couple months ago who was on PD1 and they took her off the trial because all of a sudden she had new stuff show up and more than acceptable growth. I think it was the nivo pd1 but I could be wrong. She had been on it about 18 months and was doing good. She thought maybe since she went back to her old habbit of diet that could have affected it. Her question was about TIL and I believe she decided to go to MD Anderson for it. I haven't seen anything from her since.

      Basically you just need to get a plan B in place for him for the what if you ask about happens. I thought I had a good plan B with TIL until I found out how life threatening the treatment can be so I now have 2 other trials in mind. Fortunately I'm currently at mild growth with Keytruda. Not as good as my docs want but better than anything I had before it.

      Artie

       

      BrianP
      Participant

      Ashley,

      That's the question everyone here who is still alive thanks to Anti-PD1 wants to know.  There's a lot of us, myself included, who are pretty optimistic about the future.  Although as Art mentioned, there are some exceptions, it seems most patients who respond have a pretty durable response but this is still a pretty new drug so the long term data just isn't there yet.  I think the bottom left graph on page 8 of this clinical trial does a pretty good job of demonstrating the potential durability of anti-PD1.  It was a small study, (I think one of the very first phase I trials for anti-PD1) but as you can see several of the responders at 2+ years now.

      http://tatcongress.org/wp-content/uploads/2014/05/140305-hodi.pdf

       

      Brian

      BrianP
      Participant

      Ashley,

      That's the question everyone here who is still alive thanks to Anti-PD1 wants to know.  There's a lot of us, myself included, who are pretty optimistic about the future.  Although as Art mentioned, there are some exceptions, it seems most patients who respond have a pretty durable response but this is still a pretty new drug so the long term data just isn't there yet.  I think the bottom left graph on page 8 of this clinical trial does a pretty good job of demonstrating the potential durability of anti-PD1.  It was a small study, (I think one of the very first phase I trials for anti-PD1) but as you can see several of the responders at 2+ years now.

      http://tatcongress.org/wp-content/uploads/2014/05/140305-hodi.pdf

       

      Brian

      BrianP
      Participant

      Ashley,

      That's the question everyone here who is still alive thanks to Anti-PD1 wants to know.  There's a lot of us, myself included, who are pretty optimistic about the future.  Although as Art mentioned, there are some exceptions, it seems most patients who respond have a pretty durable response but this is still a pretty new drug so the long term data just isn't there yet.  I think the bottom left graph on page 8 of this clinical trial does a pretty good job of demonstrating the potential durability of anti-PD1.  It was a small study, (I think one of the very first phase I trials for anti-PD1) but as you can see several of the responders at 2+ years now.

      http://tatcongress.org/wp-content/uploads/2014/05/140305-hodi.pdf

       

      Brian

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