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Anti pd 1 responders?
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Anti pd 1 responders?

› Forums › General Melanoma Community › Anti pd 1 responders?

  • Post
    • January 13, 2013 at 3:26 pm
    sharmon
    Participant

      Hi,  Brent will be taking his 4th infusion of Mercks Anti pd 1 on the 16th  Wed,   We cannot see any evidence of tumor regression on his back where the biggest tumor is.  He has not been able to back off any of the pain meds he takes.  He is active, walking, shopping cooking, on a small scale.  My hope is that maybe it takes all four doses to get enough in there to start a response.  He gets scanned on the 6th of February and we will know for sure.  There just isn't a lot of information on how it works or how long it takes,&nbs

      Hi,  Brent will be taking his 4th infusion of Mercks Anti pd 1 on the 16th  Wed,   We cannot see any evidence of tumor regression on his back where the biggest tumor is.  He has not been able to back off any of the pain meds he takes.  He is active, walking, shopping cooking, on a small scale.  My hope is that maybe it takes all four doses to get enough in there to start a response.  He gets scanned on the 6th of February and we will know for sure.  There just isn't a lot of information on how it works or how long it takes,  that is  reported anywhere that I can find to use as a marker.  I know everyone is different.  I know that the drug is new and I know that is new and different for everyone. 
      As you all know the waiting is the worst and as of now I have no plan B and the time is slipping away.  I need to start trying to find out what to do next if this isn't working.  I have always had the research  and appointments for the next treatment lined up by now.  Should we think about trying IPI again?  redo the testing for a Braf mutation?  Try IL-2?  Go back to MeK if it is approved by then?  Use some radiation to ease the pain in the bone mets?   Our doctors so far have made it a point to let us know what he is on isn't working but have never had a plan B. That was left to uis to decide.  Thanks for reading.  Any suggestion or words of encouragement is alway warmly welcome.

    Viewing 8 reply threads
    • Replies
        • January 13, 2013 at 4:21 pm
        NYKaren
        Participant
          Hi Sharmon,
          I just read Brent’s profile. Boy I can really understand your frustration!
          Are you still at MD Anderson? Seems like Brent’s docs could do a little thinking as well.
          From what I’ve read here, I don’t think MEK will be approved by Feb.
          I’m one of those who re-tested positive for BRAF, so in my mind, it certainly wouldn’t hurt to retest. Apparently, the older tests showed some false-negatives. Before my re-test, i was out of options and the PET scan was lighting up as never before.
          After immunotherapy, radiation is said to be a good thing, you might want to pursue that.
          I wish I had more to offer you guys, but please know that I’m thinking of you both.
          Warmly,
          Karen
          • January 13, 2013 at 4:21 pm
          NYKaren
          Participant
            Hi Sharmon,
            I just read Brent’s profile. Boy I can really understand your frustration!
            Are you still at MD Anderson? Seems like Brent’s docs could do a little thinking as well.
            From what I’ve read here, I don’t think MEK will be approved by Feb.
            I’m one of those who re-tested positive for BRAF, so in my mind, it certainly wouldn’t hurt to retest. Apparently, the older tests showed some false-negatives. Before my re-test, i was out of options and the PET scan was lighting up as never before.
            After immunotherapy, radiation is said to be a good thing, you might want to pursue that.
            I wish I had more to offer you guys, but please know that I’m thinking of you both.
            Warmly,
            Karen
            • January 13, 2013 at 4:21 pm
            NYKaren
            Participant
              Hi Sharmon,
              I just read Brent’s profile. Boy I can really understand your frustration!
              Are you still at MD Anderson? Seems like Brent’s docs could do a little thinking as well.
              From what I’ve read here, I don’t think MEK will be approved by Feb.
              I’m one of those who re-tested positive for BRAF, so in my mind, it certainly wouldn’t hurt to retest. Apparently, the older tests showed some false-negatives. Before my re-test, i was out of options and the PET scan was lighting up as never before.
              After immunotherapy, radiation is said to be a good thing, you might want to pursue that.
              I wish I had more to offer you guys, but please know that I’m thinking of you both.
              Warmly,
              Karen
              • January 13, 2013 at 5:19 pm
              JC
              Participant

                it always sounded like MD Anderson was always so top notch, why are they leaving all the alternative planning to you?

                • January 13, 2013 at 5:19 pm
                JC
                Participant

                  it always sounded like MD Anderson was always so top notch, why are they leaving all the alternative planning to you?

                  • January 13, 2013 at 5:19 pm
                  JC
                  Participant

                    it always sounded like MD Anderson was always so top notch, why are they leaving all the alternative planning to you?

                    • January 13, 2013 at 6:42 pm
                    Owl
                    Participant

                      Hi Sharmon,

                      I really admire your attitude and your strength, being in a very tough situation you still help people like me with your encouring words. That's why I want to say, go on with positive thinking, annoy anyone who could know more about Mel than you do, believe in Brents will to be alive (sounds good that he enjoys life, though on a small scale).

                      I don't know much about Anti-PD1, unfortunately, the first trials in Germany will only start in a few weeks. The idea of BRAF retesting is worth doing, Karen is the best example.

                      My thaughts are with you and I hope Brent will be a responder finally.

                      All the best, Jenny

                      • January 13, 2013 at 6:42 pm
                      Owl
                      Participant

                        Hi Sharmon,

                        I really admire your attitude and your strength, being in a very tough situation you still help people like me with your encouring words. That's why I want to say, go on with positive thinking, annoy anyone who could know more about Mel than you do, believe in Brents will to be alive (sounds good that he enjoys life, though on a small scale).

                        I don't know much about Anti-PD1, unfortunately, the first trials in Germany will only start in a few weeks. The idea of BRAF retesting is worth doing, Karen is the best example.

                        My thaughts are with you and I hope Brent will be a responder finally.

                        All the best, Jenny

                        • January 13, 2013 at 6:42 pm
                        Owl
                        Participant

                          Hi Sharmon,

                          I really admire your attitude and your strength, being in a very tough situation you still help people like me with your encouring words. That's why I want to say, go on with positive thinking, annoy anyone who could know more about Mel than you do, believe in Brents will to be alive (sounds good that he enjoys life, though on a small scale).

                          I don't know much about Anti-PD1, unfortunately, the first trials in Germany will only start in a few weeks. The idea of BRAF retesting is worth doing, Karen is the best example.

                          My thaughts are with you and I hope Brent will be a responder finally.

                          All the best, Jenny

                      Viewing 8 reply threads
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