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  • Post
    Smilgon
    Participant

      Hello everyone,

      i just wanted to say hi to all.  I was diagnosed as stage 3B in 2014 and was progression free until last month. A PET scan showed 4 lesions, one in each of my lungs. Insurance here in Switzerland will only allow Ipi monotherapy and, if I don't respond, then I would go on Keytruda.  My question is, are there any trials currently ongoing within Europe on the combination?   From what I have seen and based on recommendations from the US, I should fight for the combo, but don't want to wait too much longer to start a treatment.  Does anyone have any thoughts?

       

      Sincerely,

      Mike Baker

    Viewing 11 reply threads
    • Replies
        ed williams
        Participant

          Hi Mike, first off welcome to the forum! I know in Canada, where the combination of Ipi and Nivo was first made available 2 years ago, as part of the clinical trial checkmate 67. If I were you I would contact Bristol Myer Squibb directly and ask if you would qualify for their expanded access program. Best wishes!!! Ed

            Smilgon
            Participant

              Thank you Ed, I hadn't even though of contacting the drug manufacturer directly.  I will do so today.  I think my biggest problem is insurance.  If I had some in the US, I could figure out a way to fly back and get into a treatment program, but without insurance, I couldn't pay for it.  

              Sincerely,

              Mike Baker

              Smilgon
              Participant

                Thank you Ed, I hadn't even though of contacting the drug manufacturer directly.  I will do so today.  I think my biggest problem is insurance.  If I had some in the US, I could figure out a way to fly back and get into a treatment program, but without insurance, I couldn't pay for it.  

                Sincerely,

                Mike Baker

                Smilgon
                Participant

                  Thank you Ed, I hadn't even though of contacting the drug manufacturer directly.  I will do so today.  I think my biggest problem is insurance.  If I had some in the US, I could figure out a way to fly back and get into a treatment program, but without insurance, I couldn't pay for it.  

                  Sincerely,

                  Mike Baker

                ed williams
                Participant

                  Hi Mike, first off welcome to the forum! I know in Canada, where the combination of Ipi and Nivo was first made available 2 years ago, as part of the clinical trial checkmate 67. If I were you I would contact Bristol Myer Squibb directly and ask if you would qualify for their expanded access program. Best wishes!!! Ed

                  ed williams
                  Participant

                    Hi Mike, first off welcome to the forum! I know in Canada, where the combination of Ipi and Nivo was first made available 2 years ago, as part of the clinical trial checkmate 67. If I were you I would contact Bristol Myer Squibb directly and ask if you would qualify for their expanded access program. Best wishes!!! Ed

                    melj
                    Participant

                      Mike, I live in the UK and started pembro in January at the Royal Marsden Hospital in London. It's one of.the top cancer hospitals in Europe and are involved in many trials. Many of the patients I meet and talk to are on trials. Try contacting the Marsden to check if they have any open trials for you. Very best wishes. Mel J

                      melj
                      Participant

                        Mike, I live in the UK and started pembro in January at the Royal Marsden Hospital in London. It's one of.the top cancer hospitals in Europe and are involved in many trials. Many of the patients I meet and talk to are on trials. Try contacting the Marsden to check if they have any open trials for you. Very best wishes. Mel J

                        melj
                        Participant

                          Mike, I live in the UK and started pembro in January at the Royal Marsden Hospital in London. It's one of.the top cancer hospitals in Europe and are involved in many trials. Many of the patients I meet and talk to are on trials. Try contacting the Marsden to check if they have any open trials for you. Very best wishes. Mel J

                          JuTMSY4
                          Participant

                            Hi Mike,

                            I wanted to chime in that when I was diagnosed with Stage IV, I went through the (formerly standard) ipi -> Keytruda infusions.  I benefitted from it greatly and it's difficult to determine whether subsequent treatments rather than combo treatments are preferable.  I believe the combo is only being tested versus Nivo alone and I think that means that the combo trials require you to have not done ipi.  

                            To that end, it may be worth considering the ipi (and if failed) keytruda route.  I'm not sure if there's a "sequencing" trial or not, but when I discussed it with my doc, she suggested that at least a few people think sequencing them may be preferable to keytruda alone.  

                            Either way, best of luck.  It looks like you're trying to make the most educated and best decision you can.  

                            -Justin

                            JuTMSY4
                            Participant

                              Hi Mike,

                              I wanted to chime in that when I was diagnosed with Stage IV, I went through the (formerly standard) ipi -> Keytruda infusions.  I benefitted from it greatly and it's difficult to determine whether subsequent treatments rather than combo treatments are preferable.  I believe the combo is only being tested versus Nivo alone and I think that means that the combo trials require you to have not done ipi.  

                              To that end, it may be worth considering the ipi (and if failed) keytruda route.  I'm not sure if there's a "sequencing" trial or not, but when I discussed it with my doc, she suggested that at least a few people think sequencing them may be preferable to keytruda alone.  

                              Either way, best of luck.  It looks like you're trying to make the most educated and best decision you can.  

                              -Justin

                              JuTMSY4
                              Participant

                                Hi Mike,

                                I wanted to chime in that when I was diagnosed with Stage IV, I went through the (formerly standard) ipi -> Keytruda infusions.  I benefitted from it greatly and it's difficult to determine whether subsequent treatments rather than combo treatments are preferable.  I believe the combo is only being tested versus Nivo alone and I think that means that the combo trials require you to have not done ipi.  

                                To that end, it may be worth considering the ipi (and if failed) keytruda route.  I'm not sure if there's a "sequencing" trial or not, but when I discussed it with my doc, she suggested that at least a few people think sequencing them may be preferable to keytruda alone.  

                                Either way, best of luck.  It looks like you're trying to make the most educated and best decision you can.  

                                -Justin

                                Maria C
                                Participant

                                  Hi Mike,

                                  I agree you should fight for the combo if it's at all possible. My onc originally wanted to start me on a mono-therapy (nivo only), but after second and third opinions I was convinced the combo was the way to go, rather than mono or sequential. But it's a tough regiment and can really do a number on your system, so depending on how aggressive your melanoma is some might recommend starting off with nivo first and watch closely for disease progression.

                                  Not sure your options in Europe and/or on your insurance…but you're asking the right questions!!

                                  Best of luck, 

                                   

                                  Maria C
                                  Participant

                                    Hi Mike,

                                    I agree you should fight for the combo if it's at all possible. My onc originally wanted to start me on a mono-therapy (nivo only), but after second and third opinions I was convinced the combo was the way to go, rather than mono or sequential. But it's a tough regiment and can really do a number on your system, so depending on how aggressive your melanoma is some might recommend starting off with nivo first and watch closely for disease progression.

                                    Not sure your options in Europe and/or on your insurance…but you're asking the right questions!!

                                    Best of luck, 

                                     

                                    Maria C
                                    Participant

                                      Hi Mike,

                                      I agree you should fight for the combo if it's at all possible. My onc originally wanted to start me on a mono-therapy (nivo only), but after second and third opinions I was convinced the combo was the way to go, rather than mono or sequential. But it's a tough regiment and can really do a number on your system, so depending on how aggressive your melanoma is some might recommend starting off with nivo first and watch closely for disease progression.

                                      Not sure your options in Europe and/or on your insurance…but you're asking the right questions!!

                                      Best of luck, 

                                       

                                  Viewing 11 reply threads
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