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benp

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      benp
      Participant

        I've had a big (about 4 inch) graft on the top of my head for about three years now. It is very obvious, but you get used to it! I never think about it now at all really.

        benp
        Participant

          I've had a big (about 4 inch) graft on the top of my head for about three years now. It is very obvious, but you get used to it! I never think about it now at all really.

          benp
          Participant

            I've had a big (about 4 inch) graft on the top of my head for about three years now. It is very obvious, but you get used to it! I never think about it now at all really.

            benp
            Participant

              Hi Nick, 

              I'm sorry to hear about your father. How many brain mets does he have? If less than 8 or so (I had 10), then some form of targeted radiation (Gamma Knife, stereotactic radiosurgery, Cyberknife etc.) is far more effective for long term control of the individual brain tumors than WBR. I would have thought targeted radiation combined with something more systemic like a braf inhibitor if he is braf positive, or some form immonotherapy would be a far better option that just to "wait and see".

              Just my opinion though.

              Good luck,

              Ben.

              benp
              Participant

                Hi Nick, 

                I'm sorry to hear about your father. How many brain mets does he have? If less than 8 or so (I had 10), then some form of targeted radiation (Gamma Knife, stereotactic radiosurgery, Cyberknife etc.) is far more effective for long term control of the individual brain tumors than WBR. I would have thought targeted radiation combined with something more systemic like a braf inhibitor if he is braf positive, or some form immonotherapy would be a far better option that just to "wait and see".

                Just my opinion though.

                Good luck,

                Ben.

                benp
                Participant

                  Hi Nick, 

                  I'm sorry to hear about your father. How many brain mets does he have? If less than 8 or so (I had 10), then some form of targeted radiation (Gamma Knife, stereotactic radiosurgery, Cyberknife etc.) is far more effective for long term control of the individual brain tumors than WBR. I would have thought targeted radiation combined with something more systemic like a braf inhibitor if he is braf positive, or some form immonotherapy would be a far better option that just to "wait and see".

                  Just my opinion though.

                  Good luck,

                  Ben.

                  benp
                  Participant

                    You can add my anecdotal report to the list – I failed Ipi, just had my week 39 infusion of MK-3475, all looking pretty good. I had initial regression, and now stable disease.

                    benp
                    Participant

                      You can add my anecdotal report to the list – I failed Ipi, just had my week 39 infusion of MK-3475, all looking pretty good. I had initial regression, and now stable disease.

                      benp
                      Participant

                        You can add my anecdotal report to the list – I failed Ipi, just had my week 39 infusion of MK-3475, all looking pretty good. I had initial regression, and now stable disease.

                        benp
                        Participant

                          Happy to hear that Lisa – I know how hard it is to get on MK3475 in Australia – fortunately I'm part of a trial at Westmead (Sydney). Just had 24 week scans, all looking relatively good!

                           

                          Ben.

                          benp
                          Participant

                            Happy to hear that Lisa – I know how hard it is to get on MK3475 in Australia – fortunately I'm part of a trial at Westmead (Sydney). Just had 24 week scans, all looking relatively good!

                             

                            Ben.

                            benp
                            Participant

                              Happy to hear that Lisa – I know how hard it is to get on MK3475 in Australia – fortunately I'm part of a trial at Westmead (Sydney). Just had 24 week scans, all looking relatively good!

                               

                              Ben.

                              benp
                              Participant

                                Hi Brendan. I've been on PD1 for about 6 months, and have worked full time throughout. Occasionally get a little fatigued, but feel pretty "normal". I know everyone's different, but I have found it very empowering that the disease doesn't stop me from working.

                                 

                                Ben.

                                benp
                                Participant

                                  Hi Brendan. I've been on PD1 for about 6 months, and have worked full time throughout. Occasionally get a little fatigued, but feel pretty "normal". I know everyone's different, but I have found it very empowering that the disease doesn't stop me from working.

                                   

                                  Ben.

                                  benp
                                  Participant

                                    Hi Brendan. I've been on PD1 for about 6 months, and have worked full time throughout. Occasionally get a little fatigued, but feel pretty "normal". I know everyone's different, but I have found it very empowering that the disease doesn't stop me from working.

                                     

                                    Ben.

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