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Decision factors on randomized trial

Forums General Melanoma Community Decision factors on randomized trial

  • Post
    Michelem
    Participant

      My husband is stage three, currently recovering from surgery to remove a melanoma on his foot and eight lymph glands. Six of the glands had been completely taken over by cancerous tissue. We are told chance of recurrence is 50%. Iam thinking this may be low, given the level of involvement.

      We are waiting to learn if he has BRAF gene and could be eligible for that trial.

      otherwise, our doctor has told us we are eligible for a randomized interferon/ipi trial. We have read that interferon is not effective, and has many side effects, some know my husband is considering watch and wait, vs a randomized trial.

      it is a difficult time,mdifficult decision. I am interested I hearing decision factors and experiences of others.

      i also see there are other trials, something called IL2? I will ask our doctor about these.

      thank you for thoughts and sharing!

    Viewing 8 reply threads
    • Replies
        noisy77
        Participant

          Hello!

          My mom was stage 3 and choose to skip the ipi/ interferon trial due to the fact that she didn't want the chance of getting interferon which appears not to be effective  and the side effects are horrible.  She had melanoma in her foot and 5 nodes positive.   She is now on the pd1/ ipi trial since she did become stage 4.  Every situation is different but make sure to get second opinions by top melanoma drs.

            Michelem
            Participant

              Thank you! Good to know how others manage this choice. Such a difficult decision.  I do think more trials are open tomStage IV – though we hope not to go there.

              SABKLYN
              Participant

                Hi Michele,

                i was diagnosed with stage III a disease.  After having the lymph does removed as a follow up, I too passed on interferon.  I did get on a clinical trial (10-229 Dendritic/Langerhans cell vaccine).  I found the NIH site very easy to use and look up clinical trials appropriate for your husband's stage/type, etc.  I am being treated at Sloan Kettering in NY and you wil find some of the larger cancer hospitals will be test sites for some of these new trials.  Hope that helps and good luck!

                Michelem
                Participant

                  Thank you, we're still figuring out how to find out about trials and which ones we might be eligible for. I think the information and opportunities change all the time.

                  Michelem
                  Participant

                    Thank you, we're still figuring out how to find out about trials and which ones we might be eligible for. I think the information and opportunities change all the time.

                    Michelem
                    Participant

                      Thank you, we're still figuring out how to find out about trials and which ones we might be eligible for. I think the information and opportunities change all the time.

                      SABKLYN
                      Participant

                        Hi Michele,

                        i was diagnosed with stage III a disease.  After having the lymph does removed as a follow up, I too passed on interferon.  I did get on a clinical trial (10-229 Dendritic/Langerhans cell vaccine).  I found the NIH site very easy to use and look up clinical trials appropriate for your husband's stage/type, etc.  I am being treated at Sloan Kettering in NY and you wil find some of the larger cancer hospitals will be test sites for some of these new trials.  Hope that helps and good luck!

                        SABKLYN
                        Participant

                          Hi Michele,

                          i was diagnosed with stage III a disease.  After having the lymph does removed as a follow up, I too passed on interferon.  I did get on a clinical trial (10-229 Dendritic/Langerhans cell vaccine).  I found the NIH site very easy to use and look up clinical trials appropriate for your husband's stage/type, etc.  I am being treated at Sloan Kettering in NY and you wil find some of the larger cancer hospitals will be test sites for some of these new trials.  Hope that helps and good luck!

                          Michelem
                          Participant

                            Thank you! Good to know how others manage this choice. Such a difficult decision.  I do think more trials are open tomStage IV – though we hope not to go there.

                            Michelem
                            Participant

                              Thank you! Good to know how others manage this choice. Such a difficult decision.  I do think more trials are open tomStage IV – though we hope not to go there.

                            noisy77
                            Participant

                              Hello!

                              My mom was stage 3 and choose to skip the ipi/ interferon trial due to the fact that she didn't want the chance of getting interferon which appears not to be effective  and the side effects are horrible.  She had melanoma in her foot and 5 nodes positive.   She is now on the pd1/ ipi trial since she did become stage 4.  Every situation is different but make sure to get second opinions by top melanoma drs.

                              noisy77
                              Participant

                                Hello!

                                My mom was stage 3 and choose to skip the ipi/ interferon trial due to the fact that she didn't want the chance of getting interferon which appears not to be effective  and the side effects are horrible.  She had melanoma in her foot and 5 nodes positive.   She is now on the pd1/ ipi trial since she did become stage 4.  Every situation is different but make sure to get second opinions by top melanoma drs.

                                kathycmc
                                Participant

                                  Can't he go into the trial and then drop out if he is chosen for interpheron.  Or is that considered bad form.

                                    Michelem
                                    Participant

                                      I'm not sure – that's one of the questions on my list for the doc.

                                      Michelem
                                      Participant

                                        I'm not sure – that's one of the questions on my list for the doc.

                                        Michelem
                                        Participant

                                          I'm not sure – that's one of the questions on my list for the doc.

                                          Janner
                                          Participant

                                            Yes and yes.  But even if you withdraw, it's unlikely to have consequences unless your oncologist has problems with you doing this.  It does cost a lot of money to run trials and they really do want people who plan to participate with the study and how it is designed.  If your onc is the study doc, he may have problems if you plan this going in. 

                                            Janner
                                            Participant

                                              Yes and yes.  But even if you withdraw, it's unlikely to have consequences unless your oncologist has problems with you doing this.  It does cost a lot of money to run trials and they really do want people who plan to participate with the study and how it is designed.  If your onc is the study doc, he may have problems if you plan this going in. 

                                              Janner
                                              Participant

                                                Yes and yes.  But even if you withdraw, it's unlikely to have consequences unless your oncologist has problems with you doing this.  It does cost a lot of money to run trials and they really do want people who plan to participate with the study and how it is designed.  If your onc is the study doc, he may have problems if you plan this going in. 

                                              kathycmc
                                              Participant

                                                Can't he go into the trial and then drop out if he is chosen for interpheron.  Or is that considered bad form.

                                                kathycmc
                                                Participant

                                                  Can't he go into the trial and then drop out if he is chosen for interpheron.  Or is that considered bad form.

                                                  kpcollins31
                                                  Participant

                                                    I was in a similar situation when I progressed to stage 3C a year and a half ago. I chose watch and wait over the interferon vs ipi trial. My thought process was similar to yours – I was not willing to take the risk of being randomized into the interferon arm. I am comfortable with my decision. Good luck with yours.

                                                    Kevin

                                                     

                                                    kpcollins31
                                                    Participant

                                                      I was in a similar situation when I progressed to stage 3C a year and a half ago. I chose watch and wait over the interferon vs ipi trial. My thought process was similar to yours – I was not willing to take the risk of being randomized into the interferon arm. I am comfortable with my decision. Good luck with yours.

                                                      Kevin

                                                       

                                                      kpcollins31
                                                      Participant

                                                        I was in a similar situation when I progressed to stage 3C a year and a half ago. I chose watch and wait over the interferon vs ipi trial. My thought process was similar to yours – I was not willing to take the risk of being randomized into the interferon arm. I am comfortable with my decision. Good luck with yours.

                                                        Kevin

                                                         

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