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Clinical trial

› Forums › General Melanoma Community › Clinical trial

  • Post
    • August 4, 2016 at 11:53 am
    Shaneswife
    Participant
      Hello. Curious if anyone here is in the trial on interferon or ipilimumab vs. Prembrolizmumab? We are considering this trial for my husband once he’s 4 weeks out from his clnd. Looking for feedback about the trial experience.
    Viewing 2 reply threads
    • Replies
        • August 5, 2016 at 12:53 am
        Mamapegela
        Participant

          I am not on it yet but just signed the consent to do it.  I have scans this coming monday to make sure that I am NED and then they need to sent my tissue for PDL testing.  Assuming I had enough tissue (I ought to as I had a rather large amount of melanoma in my nodes), I will start the actual trial at the end of August.  I would start earlier but my daughter is getting married in the middle of August and I didn't want to risk not feeling well for that.

          I have decided that if I get in the interferon/ipi arm I will do the ipi.

          I hope it works well for me and for your husband too if he chooses to do it!  I did get a second opinion from MD Anderson because my melanoma specialist at the  University of Michigan does not do the high dose ipi for his stage 3 patients.  I am getting the trial closer to home at my local cancer center, and they do offer it.  I feel like I am going into it with my eyes wide open- I know the side effects can be very significant- colitis/ pituitary problems, etc.  However I also know that stage 3C melanoma can have significant "side effects".  I just want to do something!  And I don't want to feel sick for a year on interferon knowing that it shows no overall survival benefit. 

          So I can't really give you any feed back but if he decides to do it we will be in it at the same time!

          Good luck to you.

           

            • August 8, 2016 at 3:35 pm
            Elana
            Participant

              I also just signed up to do this clinical trial and will be starting at the end of august as well! My oncologist (@ MGH) reccommended we stay away from Ipi d/t the high chance of severe side effects so I will either be taking interferon or pembro. Hoping for pembro! I am young and otherwise healthy (29, semi pro athlete) so I feel like I can handle a crappy year of interferon should I get it. My oncologist also told me that it does reduce chance of recurrence by 10% so it's better than nothing in our eyes. I am stage 3B with 2 WLE (right upper back and in-transit node under right axilla) and no SLNB. Best of luck to you and your wife and everyone else!

              -Elana

              • August 9, 2016 at 4:13 pm
              ed williams
              Participant

                Hi Elana, I would take a look at the following videos, one from 2014 which features Jeffrey Weber talking about melanoma treatments in the adjuvant setting. https://www.youtube.com/watch?v=jO_iUrOLk5I   Dr. Weber gives a number for survival benefit with Ipi of 2 to 3%. The second video features Dr.Jason Luke of Chicago and is more current (2016) , if you go to the 19:35 mark he talks about Interferon. I would not under estimate the side effect profile of Interferon, I thought I was in pretty good shape and it knocked me on my ass by the second day. Best Wishes!!!! Ed

                • August 9, 2016 at 4:15 pm
                ed williams
                Participant

                  Sorry, I didn't give you the second link!!! https://www.youtube.com/watch?v=eofW8d4J6sI

                  • August 9, 2016 at 4:15 pm
                  ed williams
                  Participant

                    Sorry, I didn't give you the second link!!! https://www.youtube.com/watch?v=eofW8d4J6sI

                    • August 9, 2016 at 4:15 pm
                    ed williams
                    Participant

                      Sorry, I didn't give you the second link!!! https://www.youtube.com/watch?v=eofW8d4J6sI

                      • August 9, 2016 at 6:15 pm
                      Mamapegela
                      Participant

                        I am wondering how the very low survival benefit that you are stating with ipi correlates with the recent post of long term ipi responders?  It seems it must be higher than 2-3%.. What I have seen in the more recent literature is closer to 20%?

                        Peggy

                        • August 9, 2016 at 7:12 pm
                        ed williams
                        Participant

                          Sorry about that Peggy, I meant to write Interferon. Thanks for catching the mistake!!!!Ed

                          • August 11, 2016 at 11:58 pm
                          Mamapegela
                          Participant

                            OK yes- now that makes senseyes

                            Peggy

                            • August 11, 2016 at 11:58 pm
                            Mamapegela
                            Participant

                              OK yes- now that makes senseyes

                              Peggy

                              • August 11, 2016 at 11:58 pm
                              Mamapegela
                              Participant

                                OK yes- now that makes senseyes

                                Peggy

                                • August 9, 2016 at 7:12 pm
                                ed williams
                                Participant

                                  Sorry about that Peggy, I meant to write Interferon. Thanks for catching the mistake!!!!Ed

                                  • August 9, 2016 at 7:12 pm
                                  ed williams
                                  Participant

                                    Sorry about that Peggy, I meant to write Interferon. Thanks for catching the mistake!!!!Ed

                                    • August 9, 2016 at 6:15 pm
                                    Mamapegela
                                    Participant

                                      I am wondering how the very low survival benefit that you are stating with ipi correlates with the recent post of long term ipi responders?  It seems it must be higher than 2-3%.. What I have seen in the more recent literature is closer to 20%?

                                      Peggy

                                      • August 9, 2016 at 6:15 pm
                                      Mamapegela
                                      Participant

                                        I am wondering how the very low survival benefit that you are stating with ipi correlates with the recent post of long term ipi responders?  It seems it must be higher than 2-3%.. What I have seen in the more recent literature is closer to 20%?

                                        Peggy

                                        • August 9, 2016 at 4:13 pm
                                        ed williams
                                        Participant

                                          Hi Elana, I would take a look at the following videos, one from 2014 which features Jeffrey Weber talking about melanoma treatments in the adjuvant setting. https://www.youtube.com/watch?v=jO_iUrOLk5I   Dr. Weber gives a number for survival benefit with Ipi of 2 to 3%. The second video features Dr.Jason Luke of Chicago and is more current (2016) , if you go to the 19:35 mark he talks about Interferon. I would not under estimate the side effect profile of Interferon, I thought I was in pretty good shape and it knocked me on my ass by the second day. Best Wishes!!!! Ed

                                          • August 9, 2016 at 4:13 pm
                                          ed williams
                                          Participant

                                            Hi Elana, I would take a look at the following videos, one from 2014 which features Jeffrey Weber talking about melanoma treatments in the adjuvant setting. https://www.youtube.com/watch?v=jO_iUrOLk5I   Dr. Weber gives a number for survival benefit with Ipi of 2 to 3%. The second video features Dr.Jason Luke of Chicago and is more current (2016) , if you go to the 19:35 mark he talks about Interferon. I would not under estimate the side effect profile of Interferon, I thought I was in pretty good shape and it knocked me on my ass by the second day. Best Wishes!!!! Ed

                                            • August 8, 2016 at 3:35 pm
                                            Elana
                                            Participant

                                              I also just signed up to do this clinical trial and will be starting at the end of august as well! My oncologist (@ MGH) reccommended we stay away from Ipi d/t the high chance of severe side effects so I will either be taking interferon or pembro. Hoping for pembro! I am young and otherwise healthy (29, semi pro athlete) so I feel like I can handle a crappy year of interferon should I get it. My oncologist also told me that it does reduce chance of recurrence by 10% so it's better than nothing in our eyes. I am stage 3B with 2 WLE (right upper back and in-transit node under right axilla) and no SLNB. Best of luck to you and your wife and everyone else!

                                              -Elana

                                              • August 8, 2016 at 3:35 pm
                                              Elana
                                              Participant

                                                I also just signed up to do this clinical trial and will be starting at the end of august as well! My oncologist (@ MGH) reccommended we stay away from Ipi d/t the high chance of severe side effects so I will either be taking interferon or pembro. Hoping for pembro! I am young and otherwise healthy (29, semi pro athlete) so I feel like I can handle a crappy year of interferon should I get it. My oncologist also told me that it does reduce chance of recurrence by 10% so it's better than nothing in our eyes. I am stage 3B with 2 WLE (right upper back and in-transit node under right axilla) and no SLNB. Best of luck to you and your wife and everyone else!

                                                -Elana

                                              • August 5, 2016 at 12:53 am
                                              Mamapegela
                                              Participant

                                                I am not on it yet but just signed the consent to do it.  I have scans this coming monday to make sure that I am NED and then they need to sent my tissue for PDL testing.  Assuming I had enough tissue (I ought to as I had a rather large amount of melanoma in my nodes), I will start the actual trial at the end of August.  I would start earlier but my daughter is getting married in the middle of August and I didn't want to risk not feeling well for that.

                                                I have decided that if I get in the interferon/ipi arm I will do the ipi.

                                                I hope it works well for me and for your husband too if he chooses to do it!  I did get a second opinion from MD Anderson because my melanoma specialist at the  University of Michigan does not do the high dose ipi for his stage 3 patients.  I am getting the trial closer to home at my local cancer center, and they do offer it.  I feel like I am going into it with my eyes wide open- I know the side effects can be very significant- colitis/ pituitary problems, etc.  However I also know that stage 3C melanoma can have significant "side effects".  I just want to do something!  And I don't want to feel sick for a year on interferon knowing that it shows no overall survival benefit. 

                                                So I can't really give you any feed back but if he decides to do it we will be in it at the same time!

                                                Good luck to you.

                                                 

                                                • August 5, 2016 at 12:53 am
                                                Mamapegela
                                                Participant

                                                  I am not on it yet but just signed the consent to do it.  I have scans this coming monday to make sure that I am NED and then they need to sent my tissue for PDL testing.  Assuming I had enough tissue (I ought to as I had a rather large amount of melanoma in my nodes), I will start the actual trial at the end of August.  I would start earlier but my daughter is getting married in the middle of August and I didn't want to risk not feeling well for that.

                                                  I have decided that if I get in the interferon/ipi arm I will do the ipi.

                                                  I hope it works well for me and for your husband too if he chooses to do it!  I did get a second opinion from MD Anderson because my melanoma specialist at the  University of Michigan does not do the high dose ipi for his stage 3 patients.  I am getting the trial closer to home at my local cancer center, and they do offer it.  I feel like I am going into it with my eyes wide open- I know the side effects can be very significant- colitis/ pituitary problems, etc.  However I also know that stage 3C melanoma can have significant "side effects".  I just want to do something!  And I don't want to feel sick for a year on interferon knowing that it shows no overall survival benefit. 

                                                  So I can't really give you any feed back but if he decides to do it we will be in it at the same time!

                                                  Good luck to you.

                                                   

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