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Merck EAP PD1 pembro – have hope – it does work
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Merck EAP PD1 pembro – have hope – it does work

› Forums › General Melanoma Community › Merck EAP PD1 pembro – have hope – it does work

  • Post
    • July 25, 2014 at 6:14 pm
    arthurjedi007
    Participant

      Just thought I would share some good news for those who have struggled through failed medicines and have landed in Merck's EAP PD1.

      I confirmed with my Mayo doc the visible lump on my head that was bigger than my thumb is almost all gone with only 3 doses of this stuff. He was suprised to see a response so soon. He doesn't expect to see responses until after the 6th dose but everyone is different. The other 2 visible tumors are staying the same size according to his tape measure. Of course we have no idea about the internal ones but I am feeling better. My back spasm twinges are far less frequent. Blood work is ok with the ldh finally starting to go down a little from 423 to 399.

      Someone said on here that no matter how many medicines fail you only have to stay strong and find that one that works for you. That has kept me going so much and I finally believe this is the one for me.

      Unfortunately Mayo has an institutional policy that I have to have a scan before my 5th dose which is august 13th. My doc does not agree but his hands are tied. I really hope they keep me on this stuff because it works for me. He did say they evaluate immunotherapy results different than other results.

      Good luck to everyone. Keep the faith no matter how dark things seem. There is hope.

       

    Viewing 20 reply threads
    • Replies
        • July 25, 2014 at 8:40 pm
        Fen
        Participant

          Absolutely wonderful news!  Keeping fingers crossed for that scan.  

          Fen

          • July 25, 2014 at 8:40 pm
          Fen
          Participant

            Absolutely wonderful news!  Keeping fingers crossed for that scan.  

            Fen

            • July 25, 2014 at 8:40 pm
            Fen
            Participant

              Absolutely wonderful news!  Keeping fingers crossed for that scan.  

              Fen

              • July 25, 2014 at 9:43 pm
              RJoeyB
              Participant

                Arthur, that's good news, thank you for sharing.  And hearing you say that you're "feeling better" is as important as any data and measurements that you're seeing, too.  I'm reminded of a conversation I've had more than once with my medical oncologist, specifically about sometimes delayed responses to immunotherapies.  He's had a number of patients start on ipi or either of the PD-1's, but after their first scan get discouraging results, larger tumors, sometimes brighter on PET.  They come into the office and say basically, "Doctor, I know this doesn't make sense because the scan doesn't look as good as we hoped, but I feel great, better than I have in months!"  Because of the nature of the response, hopefully an eventual rush of white blood cells to the site(s) of disease, this can cause tumors to look larger and brighter as the fight begins.  I know this isn't everyone's experience, but again, I've heard this from my doctor about patients of his and that he has discussed the same with many of his colleagues.

                So again, congratulations on the good news, and give due credit to simply "feeling better"!

                Best, Joe

                 

                • July 25, 2014 at 9:43 pm
                RJoeyB
                Participant

                  Arthur, that's good news, thank you for sharing.  And hearing you say that you're "feeling better" is as important as any data and measurements that you're seeing, too.  I'm reminded of a conversation I've had more than once with my medical oncologist, specifically about sometimes delayed responses to immunotherapies.  He's had a number of patients start on ipi or either of the PD-1's, but after their first scan get discouraging results, larger tumors, sometimes brighter on PET.  They come into the office and say basically, "Doctor, I know this doesn't make sense because the scan doesn't look as good as we hoped, but I feel great, better than I have in months!"  Because of the nature of the response, hopefully an eventual rush of white blood cells to the site(s) of disease, this can cause tumors to look larger and brighter as the fight begins.  I know this isn't everyone's experience, but again, I've heard this from my doctor about patients of his and that he has discussed the same with many of his colleagues.

                  So again, congratulations on the good news, and give due credit to simply "feeling better"!

                  Best, Joe

                   

                  • July 25, 2014 at 9:43 pm
                  RJoeyB
                  Participant

                    Arthur, that's good news, thank you for sharing.  And hearing you say that you're "feeling better" is as important as any data and measurements that you're seeing, too.  I'm reminded of a conversation I've had more than once with my medical oncologist, specifically about sometimes delayed responses to immunotherapies.  He's had a number of patients start on ipi or either of the PD-1's, but after their first scan get discouraging results, larger tumors, sometimes brighter on PET.  They come into the office and say basically, "Doctor, I know this doesn't make sense because the scan doesn't look as good as we hoped, but I feel great, better than I have in months!"  Because of the nature of the response, hopefully an eventual rush of white blood cells to the site(s) of disease, this can cause tumors to look larger and brighter as the fight begins.  I know this isn't everyone's experience, but again, I've heard this from my doctor about patients of his and that he has discussed the same with many of his colleagues.

                    So again, congratulations on the good news, and give due credit to simply "feeling better"!

                    Best, Joe

                     

                    • July 25, 2014 at 9:47 pm
                    jualonso
                    Participant

                      Hi Arthur

                      Very good to you, i hope pd1 works for you and you keep healthy for many years NED.

                       

                      • July 25, 2014 at 9:47 pm
                      jualonso
                      Participant

                        Hi Arthur

                        Very good to you, i hope pd1 works for you and you keep healthy for many years NED.

                         

                        • July 25, 2014 at 9:47 pm
                        jualonso
                        Participant

                          Hi Arthur

                          Very good to you, i hope pd1 works for you and you keep healthy for many years NED.

                           

                          • July 25, 2014 at 9:55 pm
                          tschmith
                          Participant

                            Arthur,

                             I'm thrilled for you!  I hope and pray that it continues to work its magic!  

                            I get my second dose of Pembro next Tuesday.  My scans aren't until September 30th.  So far I've had an itchy rash, low grade fevers for about three days and fatigue….nothing terrible.

                            Best wishes to you!

                            Terrie

                            • July 25, 2014 at 9:55 pm
                            tschmith
                            Participant

                              Arthur,

                               I'm thrilled for you!  I hope and pray that it continues to work its magic!  

                              I get my second dose of Pembro next Tuesday.  My scans aren't until September 30th.  So far I've had an itchy rash, low grade fevers for about three days and fatigue….nothing terrible.

                              Best wishes to you!

                              Terrie

                              • July 25, 2014 at 9:55 pm
                              tschmith
                              Participant

                                Arthur,

                                 I'm thrilled for you!  I hope and pray that it continues to work its magic!  

                                I get my second dose of Pembro next Tuesday.  My scans aren't until September 30th.  So far I've had an itchy rash, low grade fevers for about three days and fatigue….nothing terrible.

                                Best wishes to you!

                                Terrie

                                • July 26, 2014 at 12:32 am
                                BrianP
                                Participant

                                  Sounds like great news Art. I'm very happy for you. Looking forward to seeing what that scan says. Like Joe says though, I wouldn't be too disheartened if it doesn't show reduction.  I think the fact you are feeling better is significant. 

                                  • July 26, 2014 at 12:32 am
                                  BrianP
                                  Participant

                                    Sounds like great news Art. I'm very happy for you. Looking forward to seeing what that scan says. Like Joe says though, I wouldn't be too disheartened if it doesn't show reduction.  I think the fact you are feeling better is significant. 

                                    • July 26, 2014 at 12:32 am
                                    BrianP
                                    Participant

                                      Sounds like great news Art. I'm very happy for you. Looking forward to seeing what that scan says. Like Joe says though, I wouldn't be too disheartened if it doesn't show reduction.  I think the fact you are feeling better is significant. 

                                      • July 26, 2014 at 1:55 am
                                      Bubbles
                                      Participant

                                        Dear Artie!  The fact that you have some tangible proof of a shrinking tumor and that you are feeling better is wonderful news!!  Hang in there!  I've still got all fingers and toes crossed for you!  C

                                        • July 26, 2014 at 1:55 am
                                        Bubbles
                                        Participant

                                          Dear Artie!  The fact that you have some tangible proof of a shrinking tumor and that you are feeling better is wonderful news!!  Hang in there!  I've still got all fingers and toes crossed for you!  C

                                          • July 26, 2014 at 1:55 am
                                          Bubbles
                                          Participant

                                            Dear Artie!  The fact that you have some tangible proof of a shrinking tumor and that you are feeling better is wonderful news!!  Hang in there!  I've still got all fingers and toes crossed for you!  C

                                            • July 27, 2014 at 8:51 am
                                            tcell
                                            Participant

                                              Thanks Artie for the update!

                                              Keeping fingers crossed that everything continues as it started!

                                              who knows, I might also be in that EAP soon!

                                              keeping you in my prayers,

                                              Chris

                                              • July 27, 2014 at 8:51 am
                                              tcell
                                              Participant

                                                Thanks Artie for the update!

                                                Keeping fingers crossed that everything continues as it started!

                                                who knows, I might also be in that EAP soon!

                                                keeping you in my prayers,

                                                Chris

                                                • July 27, 2014 at 8:51 am
                                                tcell
                                                Participant

                                                  Thanks Artie for the update!

                                                  Keeping fingers crossed that everything continues as it started!

                                                  who knows, I might also be in that EAP soon!

                                                  keeping you in my prayers,

                                                  Chris

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