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Need Treatment Advice Pronto

Forums General Melanoma Community Need Treatment Advice Pronto

  • Post
    Lisa13
    Participant

      I'm Stage 3c and about to decide on treatment. I'm currently NED after WLE and lymph node dissection.  I'm considering 1 month of HD Interferon or a clinical trial of ipi versus placebo. I know the clinical trial is a gamble, but there seems to be more success with ipi (if Iget it) than Interferon.  I know alot of people have had success with Interferon staying away for awhile, so I'm really torn.   My oncologist doesn't seem to have any answers for me.

      I'm Stage 3c and about to decide on treatment. I'm currently NED after WLE and lymph node dissection.  I'm considering 1 month of HD Interferon or a clinical trial of ipi versus placebo. I know the clinical trial is a gamble, but there seems to be more success with ipi (if Iget it) than Interferon.  I know alot of people have had success with Interferon staying away for awhile, so I'm really torn.   My oncologist doesn't seem to have any answers for me. Everytime I suggest something, he seems to not be thrilled with the limited success of certain drugs.  Keep in mind he's a melanoma scientist, so he's all about the science and doesn't see Interferon as a good option for me. Apparently in Canada, we don't do Interluken or Biochem anymore, so what choice do I have at this point?   He does like ipi and said I should do the trial, but with Interferon, I know I'm getting something.

      I feel I would drop out of the trial if I didn't get an autoimmune response even though I know it's not fair for the trial. I had a deep primary, so I feel I need to do whatever I can to keep this from coming back as long as I can.  What is the cutoff to do Interferon after surgery?

      Currently, I'm taking a holistic approach and trying to make my immune system as strong as I can.  It may not help, but building a stronger body can't hurt. 

      Any advice, experience with trials, etc would be greatly appreciated. 

      Thanks,

      Lisa

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    • Replies
        Sharyn
        Participant

          Hi Lisa,

          I just responded to you on MNC. But I just wanted to tell you that, to the best of my knowledge, IL-2 is available in Canada, as it was offered to me before I signed on with the ipi trial. Email me  if you like.

          Hugs

          Sharyn, Stage IV

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            MichaelFL
            Participant

              Sharyn, I could be wrong, (please correct me if I am) but from what I have gathered, many doctors in Canada do not favor the use of IL-2, and IL-2 is only available through one hospital in Canada-Montreal Jewish General Hospital for kidney cancer or melanoma. If memory serves, you are or have been seen by them.

              I also believe Lisa can appeal if denied.

              Would she be able to use it for stage III though?

              Michael

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              MichaelFL
              Participant

                Sharyn, I could be wrong, (please correct me if I am) but from what I have gathered, many doctors in Canada do not favor the use of IL-2, and IL-2 is only available through one hospital in Canada-Montreal Jewish General Hospital for kidney cancer or melanoma. If memory serves, you are or have been seen by them.

                I also believe Lisa can appeal if denied.

                Would she be able to use it for stage III though?

                Michael

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              Sharyn
              Participant

                Hi Lisa,

                I just responded to you on MNC. But I just wanted to tell you that, to the best of my knowledge, IL-2 is available in Canada, as it was offered to me before I signed on with the ipi trial. Email me  if you like.

                Hugs

                Sharyn, Stage IV

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                MichaelFL
                Participant

                  Interferon is approved for use within 56 days (8 weeks) after surgery in the U.S. I believe that is the same for Canada as well.

                  Good luck with whatever you decide to do.

                  Michael

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                  MichaelFL
                  Participant

                    Interferon is approved for use within 56 days (8 weeks) after surgery in the U.S. I believe that is the same for Canada as well.

                    Good luck with whatever you decide to do.

                    Michael

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                    Terra
                    Participant

                      Hi Lisa,

                       

                      Some oncs do not seem to be in favour of IL-2 in Canada; however, we do have access to it, the health care system will pay for your treatment and you can receive in Buffalo NY – I just do not know whether it is availabel to stage 3 patients or just stage 4 patients.  Your on c can look into it for you and if you decide he will have to apply to the gov to ensure they will pay – our onc did it for Derek, he was accpeted (as I am sure you would be) and when and if he decides to do it it is there.  The whole process took about a week or less.

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                      Terra
                      Participant

                        Hi Lisa,

                         

                        Some oncs do not seem to be in favour of IL-2 in Canada; however, we do have access to it, the health care system will pay for your treatment and you can receive in Buffalo NY – I just do not know whether it is availabel to stage 3 patients or just stage 4 patients.  Your on c can look into it for you and if you decide he will have to apply to the gov to ensure they will pay – our onc did it for Derek, he was accpeted (as I am sure you would be) and when and if he decides to do it it is there.  The whole process took about a week or less.

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                        FormerCaregiver
                        Participant

                          I have had a look at your profile, and it reminds me of what happened with
                          my late wife. She also had a very deep primary, and was diagnosed
                          in February 2007. Unfortunately, the new drugs that are around
                          today weren't available at the time. We considered interferon, but rejected
                          it after doing a lot of reading and talking to a number of people about
                          their experiences and opinions.

                          I feel that these are some of the most promising options (depending on
                          eligibility criteria):
                          Yervoy (ipilimumab)
                          BRAF and MEK inhibitors
                          GM-CSF (Leukine)
                          OncoVex
                          Adoptive cell therapy

                          As I might have mentioned before, it seems that one will need a combination
                          of treatments from the above list combined with surgery and/or radiotherapy
                          to keep things under control.

                          I think that it is good that you are taking a "holistic approach and trying
                          to make my immune system as strong as I can". We also tried that same
                          approach, but it did not help much because unfortunately melanoma is such a
                          devious cancer.

                          Frank

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                          FormerCaregiver
                          Participant

                            I have had a look at your profile, and it reminds me of what happened with
                            my late wife. She also had a very deep primary, and was diagnosed
                            in February 2007. Unfortunately, the new drugs that are around
                            today weren't available at the time. We considered interferon, but rejected
                            it after doing a lot of reading and talking to a number of people about
                            their experiences and opinions.

                            I feel that these are some of the most promising options (depending on
                            eligibility criteria):
                            Yervoy (ipilimumab)
                            BRAF and MEK inhibitors
                            GM-CSF (Leukine)
                            OncoVex
                            Adoptive cell therapy

                            As I might have mentioned before, it seems that one will need a combination
                            of treatments from the above list combined with surgery and/or radiotherapy
                            to keep things under control.

                            I think that it is good that you are taking a "holistic approach and trying
                            to make my immune system as strong as I can". We also tried that same
                            approach, but it did not help much because unfortunately melanoma is such a
                            devious cancer.

                            Frank

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