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unintended consequences

Forums General Melanoma Community unintended consequences

  • Post
    Polymath
    Participant

      Something happened to me recently that I thought was worth sharing.  The short version of my long story is I have progressed through BRAF inhibitors, then yervoy, and was finally thrilled to be qualified for anti-PD-1 treatments.  After 4 infusions, I was feeling like this too was just not working, so thanks to this board's advice, I visted my melanoma specialist who practices several thousand miles away.  I'm always trying to stay one-step ahead with a plan B and only see the specialist occationally. The specialist recomended I discontinue Prednisone, get another scan right away, and then another after about the 7th dose and finally determine if it was doing any good.  Seemed like a good plan except when I got the results of that first scan soon after my 5th dose of Keytruda, they compared it to the prior scan when I came off Yervoy and because it did show progression, my regular onc said insurance would deny any further treatments and just like that, I have been yanked off Keytruda.  Since some would argue that anti-PD-1 takes time to work, I feel a bit cheated out of that opportunity.  The other side of that coin is that if I was not a responder, better to find out sooner than later. Of course the real big problem now is there are no other FDA approved treatments, so my only options going forward are trials.  Just wanted to send out this warning flag as this series of events really caught me by surprise.

       

    Viewing 8 reply threads
    • Replies
        Marianne quinn
        Participant

          Sorry about this development .  My husband "progressed" on yervoy. He was in a clinical trial and was removed from it as it was determined that it did not work. He had microwave ablation of the tumor in his liver and has been NED for over a year.. He will be classified as a yervoy failure statistically but we believe he is a success . Is there any surgical or radiological intervention available? There is good evidence that immunotherapy is enhanced with those interventions. Good luck 

          Marianne quinn
          Participant

            Sorry about this development .  My husband "progressed" on yervoy. He was in a clinical trial and was removed from it as it was determined that it did not work. He had microwave ablation of the tumor in his liver and has been NED for over a year.. He will be classified as a yervoy failure statistically but we believe he is a success . Is there any surgical or radiological intervention available? There is good evidence that immunotherapy is enhanced with those interventions. Good luck 

            Marianne quinn
            Participant

              Sorry about this development .  My husband "progressed" on yervoy. He was in a clinical trial and was removed from it as it was determined that it did not work. He had microwave ablation of the tumor in his liver and has been NED for over a year.. He will be classified as a yervoy failure statistically but we believe he is a success . Is there any surgical or radiological intervention available? There is good evidence that immunotherapy is enhanced with those interventions. Good luck 

              Mat
              Participant

                This seems like an odd result (insurance denial) and I would think that your specialist should vigorously appeal on your behalf.

                  Bubbles
                  Participant

                    Given the known data, I am with Mat and feel your doc should appeal…and WIN!!  Hang in there!  c

                    Bubbles
                    Participant

                      Given the known data, I am with Mat and feel your doc should appeal…and WIN!!  Hang in there!  c

                      Bubbles
                      Participant

                        Given the known data, I am with Mat and feel your doc should appeal…and WIN!!  Hang in there!  c

                      Mat
                      Participant

                        This seems like an odd result (insurance denial) and I would think that your specialist should vigorously appeal on your behalf.

                        Mat
                        Participant

                          This seems like an odd result (insurance denial) and I would think that your specialist should vigorously appeal on your behalf.

                          arthurjedi007
                          Participant

                            You should get your pd1. The doc should argue and win if he thinks you have clinical benefit. I've always progresses on pd1. Always something growing but according to my doc it has slowed the growth way down. Sure I'm trying to get into a trial but if pd1 showed any help you should be able to receive it.

                            Artie

                              Bubbles
                              Participant

                                Sorry, but…..

                                Artie!!!????  What the heck are you doing posting??? Feeling ok?  Saw your post on the other link!  You are awesome!!!!  c

                                Bubbles
                                Participant

                                  Sorry, but…..

                                  Artie!!!????  What the heck are you doing posting??? Feeling ok?  Saw your post on the other link!  You are awesome!!!!  c

                                  Bubbles
                                  Participant

                                    Sorry, but…..

                                    Artie!!!????  What the heck are you doing posting??? Feeling ok?  Saw your post on the other link!  You are awesome!!!!  c

                                    arthurjedi007
                                    Participant

                                      Ha. Yes I was in the hospital and just had to post that one. Too crazy not to get his pd1.

                                      Just got back home couple hours ago. Feel crummy. My gi system is all stopped up. Can't hardly stand let alone walk much. Like the muscles to support my back just aren't working right. Can't put my recliner back enough to sleep cause triggers massive pain in that spot. Haven't even risked trying my sleep number bed. So looks like I got yet another tough road of recovery. I just hope the ablation was worth all this.

                                      Artie

                                      arthurjedi007
                                      Participant

                                        Ha. Yes I was in the hospital and just had to post that one. Too crazy not to get his pd1.

                                        Just got back home couple hours ago. Feel crummy. My gi system is all stopped up. Can't hardly stand let alone walk much. Like the muscles to support my back just aren't working right. Can't put my recliner back enough to sleep cause triggers massive pain in that spot. Haven't even risked trying my sleep number bed. So looks like I got yet another tough road of recovery. I just hope the ablation was worth all this.

                                        Artie

                                        Bubbles
                                        Participant

                                          I was so hoping that this wouldn't be too tough!!!  Oh, well….  So sorry.  But I know how tough YOU are!  Hang in there.  Hope you get to feeling much better quickly!  c

                                          Bubbles
                                          Participant

                                            I was so hoping that this wouldn't be too tough!!!  Oh, well….  So sorry.  But I know how tough YOU are!  Hang in there.  Hope you get to feeling much better quickly!  c

                                            Polymath
                                            Participant

                                              Thanks to all those who chimed in.  While I have doubts as to whether I'm a responder, new developments may get me back into PD-1 treatment along with a treatment trial I appear to be heading into.  I want to specifically give overdue thanks to Artie (whom I share a number of similar aspects with) and Celeste who is always there with wonderful advice and support.  Between Artie's epic fight, and Celeste's care and knowledge, you give tremendous hope, and inspire so many of us sharing the same battle.

                                              Aloha, Gary

                                              Polymath
                                              Participant

                                                Thanks to all those who chimed in.  While I have doubts as to whether I'm a responder, new developments may get me back into PD-1 treatment along with a treatment trial I appear to be heading into.  I want to specifically give overdue thanks to Artie (whom I share a number of similar aspects with) and Celeste who is always there with wonderful advice and support.  Between Artie's epic fight, and Celeste's care and knowledge, you give tremendous hope, and inspire so many of us sharing the same battle.

                                                Aloha, Gary

                                                Bubbles
                                                Participant

                                                  Oh, Gary.  You are too sweet.  But, I am really glad options are unfolding for you.  Keep us posted.  Hang in there.  It's a crazy road for sure. Yours, C

                                                  Bubbles
                                                  Participant

                                                    Oh, Gary.  You are too sweet.  But, I am really glad options are unfolding for you.  Keep us posted.  Hang in there.  It's a crazy road for sure. Yours, C

                                                    Bubbles
                                                    Participant

                                                      Oh, Gary.  You are too sweet.  But, I am really glad options are unfolding for you.  Keep us posted.  Hang in there.  It's a crazy road for sure. Yours, C

                                                      Polymath
                                                      Participant

                                                        Thanks to all those who chimed in.  While I have doubts as to whether I'm a responder, new developments may get me back into PD-1 treatment along with a treatment trial I appear to be heading into.  I want to specifically give overdue thanks to Artie (whom I share a number of similar aspects with) and Celeste who is always there with wonderful advice and support.  Between Artie's epic fight, and Celeste's care and knowledge, you give tremendous hope, and inspire so many of us sharing the same battle.

                                                        Aloha, Gary

                                                        Bubbles
                                                        Participant

                                                          I was so hoping that this wouldn't be too tough!!!  Oh, well….  So sorry.  But I know how tough YOU are!  Hang in there.  Hope you get to feeling much better quickly!  c

                                                          arthurjedi007
                                                          Participant

                                                            Ha. Yes I was in the hospital and just had to post that one. Too crazy not to get his pd1.

                                                            Just got back home couple hours ago. Feel crummy. My gi system is all stopped up. Can't hardly stand let alone walk much. Like the muscles to support my back just aren't working right. Can't put my recliner back enough to sleep cause triggers massive pain in that spot. Haven't even risked trying my sleep number bed. So looks like I got yet another tough road of recovery. I just hope the ablation was worth all this.

                                                            Artie

                                                          arthurjedi007
                                                          Participant

                                                            You should get your pd1. The doc should argue and win if he thinks you have clinical benefit. I've always progresses on pd1. Always something growing but according to my doc it has slowed the growth way down. Sure I'm trying to get into a trial but if pd1 showed any help you should be able to receive it.

                                                            Artie

                                                            arthurjedi007
                                                            Participant

                                                              You should get your pd1. The doc should argue and win if he thinks you have clinical benefit. I've always progresses on pd1. Always something growing but according to my doc it has slowed the growth way down. Sure I'm trying to get into a trial but if pd1 showed any help you should be able to receive it.

                                                              Artie

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