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Junk1962
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Junk1962

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      • September 6, 2013 at 2:17 pm
      Junk1962
      Participant

        Thank you so much for your response!  It is so helpful to hear stories of real people and not just statistics!  So great your husband is NED!  Keep up the fight!

        • September 26, 2013 at 3:19 am
        Junk1962
        Participant

          They had some recent deaths in the 10mg arm.  Not sure what the cause was – so they discontinued.  We were hoping they would let him go into the 3mg arm but they say his only option is interferon.  Just don't feel it's as effective??  Of course he still is NED – so I guess we need to stay positive!  It took a lot to decide to do the trial and we felt it was the right decision!  Now the rug has been ripped from under us and we are back to deciding a treatment option!

          • September 26, 2013 at 3:19 am
          Junk1962
          Participant

            They had some recent deaths in the 10mg arm.  Not sure what the cause was – so they discontinued.  We were hoping they would let him go into the 3mg arm but they say his only option is interferon.  Just don't feel it's as effective??  Of course he still is NED – so I guess we need to stay positive!  It took a lot to decide to do the trial and we felt it was the right decision!  Now the rug has been ripped from under us and we are back to deciding a treatment option!

            • September 26, 2013 at 3:19 am
            Junk1962
            Participant

              They had some recent deaths in the 10mg arm.  Not sure what the cause was – so they discontinued.  We were hoping they would let him go into the 3mg arm but they say his only option is interferon.  Just don't feel it's as effective??  Of course he still is NED – so I guess we need to stay positive!  It took a lot to decide to do the trial and we felt it was the right decision!  Now the rug has been ripped from under us and we are back to deciding a treatment option!

              • September 12, 2013 at 10:29 am
              Junk1962
              Participant
                Hi Matt-my husband just started this trial in Boston
                He got the Ipi 10mg arm. Had his first treatment 2 days ago and no side effects as of yet. They say after the second dose it’s more likely to start. We researched quite a bit and it seemed to us Ipi was the most effective in fighting this disease-so we are cautiously optimistic! It seems like there are no certainties with Melanoma, so do your research and make a decision you are comfortable with. It’s very scary -all the unknowns-but, we feel better trying to fight this thing! Will keep you posted on his progress. Good luck!
                • September 12, 2013 at 10:29 am
                Junk1962
                Participant
                  Hi Matt-my husband just started this trial in Boston
                  He got the Ipi 10mg arm. Had his first treatment 2 days ago and no side effects as of yet. They say after the second dose it’s more likely to start. We researched quite a bit and it seemed to us Ipi was the most effective in fighting this disease-so we are cautiously optimistic! It seems like there are no certainties with Melanoma, so do your research and make a decision you are comfortable with. It’s very scary -all the unknowns-but, we feel better trying to fight this thing! Will keep you posted on his progress. Good luck!
                  • September 12, 2013 at 10:29 am
                  Junk1962
                  Participant
                    Hi Matt-my husband just started this trial in Boston
                    He got the Ipi 10mg arm. Had his first treatment 2 days ago and no side effects as of yet. They say after the second dose it’s more likely to start. We researched quite a bit and it seemed to us Ipi was the most effective in fighting this disease-so we are cautiously optimistic! It seems like there are no certainties with Melanoma, so do your research and make a decision you are comfortable with. It’s very scary -all the unknowns-but, we feel better trying to fight this thing! Will keep you posted on his progress. Good luck!
                    • September 9, 2013 at 5:18 pm
                    Junk1962
                    Participant

                      Thanks for your response!  How has he been dealing with the ipi infusions?  Is he on the 3mg or 10mg?   What have his side effects been?  Being informed is really helping me cope!  Thanks, again!  Good luck to your husband (and you!)>>>

                      • September 9, 2013 at 5:18 pm
                      Junk1962
                      Participant

                        Thanks for your response!  How has he been dealing with the ipi infusions?  Is he on the 3mg or 10mg?   What have his side effects been?  Being informed is really helping me cope!  Thanks, again!  Good luck to your husband (and you!)>>>

                        • September 9, 2013 at 5:18 pm
                        Junk1962
                        Participant

                          Thanks for your response!  How has he been dealing with the ipi infusions?  Is he on the 3mg or 10mg?   What have his side effects been?  Being informed is really helping me cope!  Thanks, again!  Good luck to your husband (and you!)>>>

                          • September 9, 2013 at 5:16 pm
                          Junk1962
                          Participant

                            We struggled with the decision too and at one point said we wouldn't do the trial if we got the 10mg ipi option.  But, after reading through a lot more data and outcomes – my husband decided it is not worth the risk NOT to do anything.  He wasn't impressed with the interferon outcomes.  Ipi seems to be working on tumors – so hopefully, if anything is lurking in his system now the ipi will kill it.  We are prepared for side effects and would rather see a long life with no melanoma!  He starts tomorrow.  Will keep you posted!

                            • September 9, 2013 at 5:16 pm
                            Junk1962
                            Participant

                              We struggled with the decision too and at one point said we wouldn't do the trial if we got the 10mg ipi option.  But, after reading through a lot more data and outcomes – my husband decided it is not worth the risk NOT to do anything.  He wasn't impressed with the interferon outcomes.  Ipi seems to be working on tumors – so hopefully, if anything is lurking in his system now the ipi will kill it.  We are prepared for side effects and would rather see a long life with no melanoma!  He starts tomorrow.  Will keep you posted!

                              • September 9, 2013 at 5:16 pm
                              Junk1962
                              Participant

                                We struggled with the decision too and at one point said we wouldn't do the trial if we got the 10mg ipi option.  But, after reading through a lot more data and outcomes – my husband decided it is not worth the risk NOT to do anything.  He wasn't impressed with the interferon outcomes.  Ipi seems to be working on tumors – so hopefully, if anything is lurking in his system now the ipi will kill it.  We are prepared for side effects and would rather see a long life with no melanoma!  He starts tomorrow.  Will keep you posted!

                                • September 6, 2013 at 2:17 pm
                                Junk1962
                                Participant

                                  Thank you so much for your response!  It is so helpful to hear stories of real people and not just statistics!  So great your husband is NED!  Keep up the fight!

                                  • September 6, 2013 at 2:17 pm
                                  Junk1962
                                  Participant

                                    Thank you so much for your response!  It is so helpful to hear stories of real people and not just statistics!  So great your husband is NED!  Keep up the fight!

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