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Suggestions for Stage 4, mets on skin & pancreas, BRAF neg, IL2 failed?

Forums General Melanoma Community Suggestions for Stage 4, mets on skin & pancreas, BRAF neg, IL2 failed?

  • Post
    mygirlmaddy
    Participant

    My husband is stage 4 recurrent melanoma.  We tried IL2 but he has additional sites since.  He is BRAF negative and currently has mets on skin and pancreas.  Our doctor recommended surgery but now says they couldn't get to the pancreas nodules easily and isn't confident surgery could remove everything.  We did the Ipi clinical trial before the recurrence, but our doctor now suggests going on Ipi compassionate.  Does anyone have other suggestions?  Scans coming up this week and next and we are supposed to start the Ipi next Wednesday.

    My husband is stage 4 recurrent melanoma.  We tried IL2 but he has additional sites since.  He is BRAF negative and currently has mets on skin and pancreas.  Our doctor recommended surgery but now says they couldn't get to the pancreas nodules easily and isn't confident surgery could remove everything.  We did the Ipi clinical trial before the recurrence, but our doctor now suggests going on Ipi compassionate.  Does anyone have other suggestions?  Scans coming up this week and next and we are supposed to start the Ipi next Wednesday.

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  • Replies
      emilypen
      Participant

      Hi,

      What about a mek inhibitor? I know there are trials being done and BRAF is not a requirement.

      or Oncovex? as long as you have no bone mets I hear it's getting great results! They are also using Oncovex on pancreatic cancer.

      http://clinicaltrials.gov/ct2/show/NCT00769704?term=oncovex&rank=3

       

      good luck,

      Emily

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        mygirlmaddy
        Participant

        Thanks Emily!  I will look in to both.  We feel like our doctor is uncertain which scares us.  He is a melanoma specialist at the best treatment center in the northeast so for him to be unclear as to what path to take is very intimidating.   I hate to start Ipi, knowing that he may have already gotten it without results and close the door on something that has a better chance.

        Thanks again,

        Audrey

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        mygirlmaddy
        Participant

        Thanks Emily!  I will look in to both.  We feel like our doctor is uncertain which scares us.  He is a melanoma specialist at the best treatment center in the northeast so for him to be unclear as to what path to take is very intimidating.   I hate to start Ipi, knowing that he may have already gotten it without results and close the door on something that has a better chance.

        Thanks again,

        Audrey

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        mygirlmaddy
        Participant

        Thanks Emily!  I will look in to both.  We feel like our doctor is uncertain which scares us.  He is a melanoma specialist at the best treatment center in the northeast so for him to be unclear as to what path to take is very intimidating.   I hate to start Ipi, knowing that he may have already gotten it without results and close the door on something that has a better chance.

        Thanks again,

        Audrey

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        mygirlmaddy
        Participant

        Thanks Emily!  I will look in to both.  We feel like our doctor is uncertain which scares us.  He is a melanoma specialist at the best treatment center in the northeast so for him to be unclear as to what path to take is very intimidating.   I hate to start Ipi, knowing that he may have already gotten it without results and close the door on something that has a better chance.

        Thanks again,

        Audrey

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      emilypen
      Participant

      Hi,

      What about a mek inhibitor? I know there are trials being done and BRAF is not a requirement.

      or Oncovex? as long as you have no bone mets I hear it's getting great results! They are also using Oncovex on pancreatic cancer.

      http://clinicaltrials.gov/ct2/show/NCT00769704?term=oncovex&rank=3

       

      good luck,

      Emily

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      LynnLuc
      Participant

      If you feel uncomfortable with your doctor then you should find a different onc…since you feel he seems uncertain in what direction  it's a clear sign that you should follow your gut and find a melanoma specialist.  Gotta be proactive !- Lynn

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      LynnLuc
      Participant

      If you feel uncomfortable with your doctor then you should find a different onc…since you feel he seems uncertain in what direction  it's a clear sign that you should follow your gut and find a melanoma specialist.  Gotta be proactive !- Lynn

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