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Decision Time
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Decision Time

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  • Post
    • April 13, 2017 at 5:35 pm
    NSNewf
    Participant

      I am confirmed Stage 3a and I am currently NED. A possible trial offers HDI/IPI or Pembro. My oncologist hold me because I won't take HDI I disqualify myself. However the oncologist administering trial is not saying the same thing. 

      I am taking this weekend to decide next steps. Ethically I struggle with possibly proceeding when there is a drug that should I be selected would refuse. 

      I am interested in others thoughts

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    • Replies
        • April 13, 2017 at 5:43 pm
        jennunicorn
        Participant

          It is totally your right to give the trial a try and if you get the arm you don't want, you can quit. Don't blame you for not wanting interferon. At 3a, observation is also a really good choice. Many 3a patients have done no treatment and have not had the melanoma come back. Other option is to do Ipi alone, since it is approved and would not be a trial.

            • April 13, 2017 at 6:04 pm
            Jamie1960
            Participant

              I think the question is not only one of ethics on your end (for which you should be applauded), but also basic science on the part of the trial's sponsors; if you are NED, what would they hope to gain from your participation ?

              • April 13, 2017 at 8:43 pm
              Spl25
              Participant

                the entire trial is designed for people who are NED — hope is to see if it leads to durable remissions and better overall survival

              • April 13, 2017 at 7:07 pm
              MichelleRHG
              Participant
                If this is trial S1404, I was 2enrolled in it but got thrown out the day of the 1st infusion bc more melanoma was found. Went through the entire enrollment process so can tell you that if its the same trial, the choice between ipi and interferon is just that . A choice made between you and the doctor running the trial. No doctor is going to choose interferon for you, though. So you will get ipi or keytruda and its just a randomized thing. Good luck.
                • April 16, 2017 at 3:52 pm
                BetsyG
                Participant

                  My son is also trying to decide whether to do the CLND and this trial.  We were told that the ipi vs interferon is patient choice and then there is the 50% chance of getting Keytruda.  He told the doctor straight out that if he's randomized to ipi (interferron was always off the table), he'll quit the study.  The doctor said he didn't blame him and still acted like he could still decide to enroll.  For now, he's waiting for another scan to make sure some small nodules in the lungs don't grow.

                  It is no problem to have a smaller group on one research arm.  Do what is best for you.

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