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Anyone doing Anti-PD1 in Australia?
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Anyone doing Anti-PD1 in Australia?

› Forums › General Melanoma Community › Anyone doing Anti-PD1 in Australia?

  • Post
    • September 11, 2012 at 1:10 am
    AllyNTAus
    Participant

      Hi everyone,

      I am currently on Dabrafenib, the GSK BRAF inhibitor, and thought I was doing great, had good scan results in late July, but yesterday I found what seems to be a new lump in my left armpit, and have had some intermittent aching in that area for a few weeks, so now I am really scared that my scans next week will show that D has stopped working for me (after only 5 months!!). Hoping against hope that the lump is something unrelated to Mel but today I just can't shake that feeling of doom.

      Hi everyone,

      I am currently on Dabrafenib, the GSK BRAF inhibitor, and thought I was doing great, had good scan results in late July, but yesterday I found what seems to be a new lump in my left armpit, and have had some intermittent aching in that area for a few weeks, so now I am really scared that my scans next week will show that D has stopped working for me (after only 5 months!!). Hoping against hope that the lump is something unrelated to Mel but today I just can't shake that feeling of doom.

      That has led me to start trying to find out about other options so I am ready to talk to my doctor next week should we need to have the conversation about alternative treatments. Obviously Yervoy would be one option (at very significant cost, but if we have to pay we will), but I have also been really encouraged hearing the good stories about anti-PD1. I had a bit of a search last night and came up with one trial listing in Australia, that is Merck's MK-3475 which is listed as recruiting. I might not be searching correctly but I couldn't find any other anti-PD1 trials listed in Australia.

      Is there anyone out there with any experience of anti-PD1 in Australia? Would be grateful for any information.

      Best wishes to everyone,

      Allison

    Viewing 8 reply threads
    • Replies
        • September 11, 2012 at 2:46 am
        awillett1991
        Participant
          Ally,

          Have you tried posting on Melanoma International Foundation? They seem to have more patients from outside the US. Also, there is a new webinar on promising new trials for 2012, haven’t seen it but may be helpful.

          So sorry to hear your news, Zel has most likely failed me after 5 mos, have some ?? Spots in my abdomen, low lymphs & heart met keeping me out of all the trials. I am switching to IPI. Keep fighting!

          Amy

            • September 11, 2012 at 6:30 am
            deardad
            Participant

              Hi Ally, hope that lump isn't melanoma, but the fact that it's aching makes it sound suspicious. I tried to find PD1 trials in Australia for my dad, especially Merks, but there were none in sight two months ago. I'm not sure what you're circumstances are but I would investigate going to the US to get that trial. It is so promising and Australia is so far behind trial wise.

              Take care

              Nahmi

              • September 11, 2012 at 6:30 am
              deardad
              Participant

                Hi Ally, hope that lump isn't melanoma, but the fact that it's aching makes it sound suspicious. I tried to find PD1 trials in Australia for my dad, especially Merks, but there were none in sight two months ago. I'm not sure what you're circumstances are but I would investigate going to the US to get that trial. It is so promising and Australia is so far behind trial wise.

                Take care

                Nahmi

                • September 11, 2012 at 6:30 am
                deardad
                Participant

                  Hi Ally, hope that lump isn't melanoma, but the fact that it's aching makes it sound suspicious. I tried to find PD1 trials in Australia for my dad, especially Merks, but there were none in sight two months ago. I'm not sure what you're circumstances are but I would investigate going to the US to get that trial. It is so promising and Australia is so far behind trial wise.

                  Take care

                  Nahmi

                • September 11, 2012 at 2:46 am
                awillett1991
                Participant
                  Ally,

                  Have you tried posting on Melanoma International Foundation? They seem to have more patients from outside the US. Also, there is a new webinar on promising new trials for 2012, haven’t seen it but may be helpful.

                  So sorry to hear your news, Zel has most likely failed me after 5 mos, have some ?? Spots in my abdomen, low lymphs & heart met keeping me out of all the trials. I am switching to IPI. Keep fighting!

                  Amy

                  • September 11, 2012 at 2:46 am
                  awillett1991
                  Participant
                    Ally,

                    Have you tried posting on Melanoma International Foundation? They seem to have more patients from outside the US. Also, there is a new webinar on promising new trials for 2012, haven’t seen it but may be helpful.

                    So sorry to hear your news, Zel has most likely failed me after 5 mos, have some ?? Spots in my abdomen, low lymphs & heart met keeping me out of all the trials. I am switching to IPI. Keep fighting!

                    Amy

                    • September 11, 2012 at 6:27 am
                    FormerCaregiver
                    Participant

                      Allison, I concur with you regarding anti PD-1 trials. From what I have read, early
                      results of these trials seem to be very promising indeed. Unfortunately, the big problem
                      locally is that there is a serious lack of stage 4 treatment options. New clinical
                      trials here seem to be very limited in number.

                      I feel that the best melanoma treatments are generally available in the States at the
                      moment.

                      Here is a link to melanoma specific anti PD-1 trials that are currently recruiting
                      patients:
                      http://www.clinicaltrials.gov/ct2/results?term=melanoma+pd-1

                      For general MDX-1106 (anti PD-1) trials see:
                      http://www.clinicaltrials.gov/ct2/results?term=MDX-1106&recr=Open

                      Hope this helps

                      Frank from Australia

                      • September 11, 2012 at 6:27 am
                      FormerCaregiver
                      Participant

                        Allison, I concur with you regarding anti PD-1 trials. From what I have read, early
                        results of these trials seem to be very promising indeed. Unfortunately, the big problem
                        locally is that there is a serious lack of stage 4 treatment options. New clinical
                        trials here seem to be very limited in number.

                        I feel that the best melanoma treatments are generally available in the States at the
                        moment.

                        Here is a link to melanoma specific anti PD-1 trials that are currently recruiting
                        patients:
                        http://www.clinicaltrials.gov/ct2/results?term=melanoma+pd-1

                        For general MDX-1106 (anti PD-1) trials see:
                        http://www.clinicaltrials.gov/ct2/results?term=MDX-1106&recr=Open

                        Hope this helps

                        Frank from Australia

                        • September 11, 2012 at 6:27 am
                        FormerCaregiver
                        Participant

                          Allison, I concur with you regarding anti PD-1 trials. From what I have read, early
                          results of these trials seem to be very promising indeed. Unfortunately, the big problem
                          locally is that there is a serious lack of stage 4 treatment options. New clinical
                          trials here seem to be very limited in number.

                          I feel that the best melanoma treatments are generally available in the States at the
                          moment.

                          Here is a link to melanoma specific anti PD-1 trials that are currently recruiting
                          patients:
                          http://www.clinicaltrials.gov/ct2/results?term=melanoma+pd-1

                          For general MDX-1106 (anti PD-1) trials see:
                          http://www.clinicaltrials.gov/ct2/results?term=MDX-1106&recr=Open

                          Hope this helps

                          Frank from Australia

                          • September 12, 2012 at 12:37 am
                          AllyNTAus
                          Participant

                            Thanks for the suggestions everyone, I will look into those other trial options with my doctor next week should it turn out to be a progression of the disease. The thought of having to up and go to the States is scary but if I have to I will.

                            • September 12, 2012 at 12:37 am
                            AllyNTAus
                            Participant

                              Thanks for the suggestions everyone, I will look into those other trial options with my doctor next week should it turn out to be a progression of the disease. The thought of having to up and go to the States is scary but if I have to I will.

                              • September 12, 2012 at 12:37 am
                              AllyNTAus
                              Participant

                                Thanks for the suggestions everyone, I will look into those other trial options with my doctor next week should it turn out to be a progression of the disease. The thought of having to up and go to the States is scary but if I have to I will.

                            Viewing 8 reply threads
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