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Clinical trial advice
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Clinical trial advice

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  • Post
    • November 24, 2010 at 2:11 am
    churchwelldana
    Participant

      I'm currently stage 3a, about to have surgery to remove lymph nodes. After that I will start Interferon. I live in Memphis and there are no clinical trials available here. There is one available at Vanderbilt in Nashville (4 hour drive). It involves using ipilimumab, but it is a double blind study. I'm just wondering if that would even be worth my time. I know most all of this is a wait and see kind of thing, but I'm only 32 and would like to do whatever I can to reduce my chances of it coming back.

      I'm currently stage 3a, about to have surgery to remove lymph nodes. After that I will start Interferon. I live in Memphis and there are no clinical trials available here. There is one available at Vanderbilt in Nashville (4 hour drive). It involves using ipilimumab, but it is a double blind study. I'm just wondering if that would even be worth my time. I know most all of this is a wait and see kind of thing, but I'm only 32 and would like to do whatever I can to reduce my chances of it coming back. The good thing is that my PET/CT scans were clear and that I only had one sentinel node with a micrometastases.

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    • Replies
        • November 24, 2010 at 3:48 am
        debbieVA
        Participant

          Hello Dana….

          I just met you in chat…You sound lovely…even tho you don't like to cook!  LOL!  Wishing you a lovely happy Thanksgiving with your family.  I know you are headed into your LND….not the best kind of Birthday present…but keep your spirits up~!  Praying for a speedy recovery.  Best to you!

          Debbie Stage 4 NED 

          • November 24, 2010 at 3:48 am
          debbieVA
          Participant

            Hello Dana….

            I just met you in chat…You sound lovely…even tho you don't like to cook!  LOL!  Wishing you a lovely happy Thanksgiving with your family.  I know you are headed into your LND….not the best kind of Birthday present…but keep your spirits up~!  Praying for a speedy recovery.  Best to you!

            Debbie Stage 4 NED 

            • November 24, 2010 at 4:44 am
            ValinMtl
            Participant

              Hi Dana, please be careful of double blind studies.  If I recall correctly, should you end up not with ipilimumab, and receive say 'placebo'…this could prevent you from participating in any further ipilimumab trials.  Do verify this with your doctor.  I was offered a study with ipilimumab on one arm and the other with placebo when I was stage 3b…I nixed it because I was certain I'd end up on the placebo arm.  I did interferon, didn't work but hey a friend did interferon about 15 years ago and he had an unknown primary..still doing well.  I'm now stage IV and on compassionate ipilimumab trial, glad I waited.

              Best wishes on all your decisions, glad to hear your PET/CT scans were clear.  Val

                • November 24, 2010 at 3:21 pm
                KatyWI
                Participant

                  Val makes a good point, but I think this particular Ipi study is "lower risk" in terms of getting excluded from further Ipi trials.  Here's why I think so:  Ipi is likely to be approved for stage IV patients in March.  The study Dana's considering is for stage III/fully resected patients.  If she goes on the trial and sometime later progresses to stage IV, assuming Ipi gets approved, she won't have to be in a trial to access Ipi.  The chance of getting placebo is a real concern in any trial, but for this trial at least, I don't think exclusion from future trials is a big concern.  It's a worthwhile question to post to the lead investigator on the study, if you continue to consider the adjuvant Ipi trial.

                  Dana, good luck with your decision. 

                  KatyWI

                  • November 24, 2010 at 3:21 pm
                  KatyWI
                  Participant

                    Val makes a good point, but I think this particular Ipi study is "lower risk" in terms of getting excluded from further Ipi trials.  Here's why I think so:  Ipi is likely to be approved for stage IV patients in March.  The study Dana's considering is for stage III/fully resected patients.  If she goes on the trial and sometime later progresses to stage IV, assuming Ipi gets approved, she won't have to be in a trial to access Ipi.  The chance of getting placebo is a real concern in any trial, but for this trial at least, I don't think exclusion from future trials is a big concern.  It's a worthwhile question to post to the lead investigator on the study, if you continue to consider the adjuvant Ipi trial.

                    Dana, good luck with your decision. 

                    KatyWI

                  • November 24, 2010 at 4:44 am
                  ValinMtl
                  Participant

                    Hi Dana, please be careful of double blind studies.  If I recall correctly, should you end up not with ipilimumab, and receive say 'placebo'…this could prevent you from participating in any further ipilimumab trials.  Do verify this with your doctor.  I was offered a study with ipilimumab on one arm and the other with placebo when I was stage 3b…I nixed it because I was certain I'd end up on the placebo arm.  I did interferon, didn't work but hey a friend did interferon about 15 years ago and he had an unknown primary..still doing well.  I'm now stage IV and on compassionate ipilimumab trial, glad I waited.

                    Best wishes on all your decisions, glad to hear your PET/CT scans were clear.  Val

                    • November 26, 2010 at 2:52 pm
                    ChristineL
                    Participant

                      Hi,

                      Just want to mention that I was rejected from this trial because I didn't have "enough" cancer in my lymph node to qualify.  You may want to check that first to make sure you're eligible (need 1mm in node).  Unless of course the oncologst already told you that you were good to go, and then I'll just shut up… 🙂    Good luck with your decision, whatever you decide, it will be the right one!

                      • November 26, 2010 at 2:52 pm
                      ChristineL
                      Participant

                        Hi,

                        Just want to mention that I was rejected from this trial because I didn't have "enough" cancer in my lymph node to qualify.  You may want to check that first to make sure you're eligible (need 1mm in node).  Unless of course the oncologst already told you that you were good to go, and then I'll just shut up… 🙂    Good luck with your decision, whatever you decide, it will be the right one!

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