Fiance was just diagonosed a month ago. Stage IV. Looking for advice and personal stories on treatments.
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Fiance was just diagonosed a month ago. Stage IV. Looking for advice and personal stories on treatments.

› Forums › General Melanoma Community › Fiance was just diagonosed a month ago. Stage IV. Looking for advice and personal stories on treatments.

  • Post
    • January 30, 2013 at 4:34 am
    aliciajo
    Participant

      We have done radiation on the tumor on his back, radio-surgery to the tumor in his brain, been waiting to hear back for 2 weeks on the B-raf mutation and possible going to do IL 2 in a week. Anyone been on this road and have any advice??? So far the side effects are, sore esphogus and difficult swallowing and burping and since there are liver spots, really uncomfortable around the liver. He also can't eat a lot at one time, since this makes the liver uncomfortable feeling worse. Advice or personal stories of what has worked and what has not worked would be most helpful. Thanks.

      We have done radiation on the tumor on his back, radio-surgery to the tumor in his brain, been waiting to hear back for 2 weeks on the B-raf mutation and possible going to do IL 2 in a week. Anyone been on this road and have any advice??? So far the side effects are, sore esphogus and difficult swallowing and burping and since there are liver spots, really uncomfortable around the liver. He also can't eat a lot at one time, since this makes the liver uncomfortable feeling worse. Advice or personal stories of what has worked and what has not worked would be most helpful. Thanks.

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        • January 30, 2013 at 11:25 am
        jmmm
        Participant
          Make sure that he is being seen by a melanoma specialist! There have been big changes with melanona treatment over the past two years. Have they considered Yervoy (also called Ipi)? That’s a newer treatment with a higher response rate than il-2. if he’s BRaf positive, he can try Zelboraf, but it’s usually a temporary fix. There are a bunch of phase 3 trials using anti-pd1 which seems to be a good treatment, but for most trials, his brain would need to be stable for 8 weeks.
          • January 30, 2013 at 11:25 am
          jmmm
          Participant
            Make sure that he is being seen by a melanoma specialist! There have been big changes with melanona treatment over the past two years. Have they considered Yervoy (also called Ipi)? That’s a newer treatment with a higher response rate than il-2. if he’s BRaf positive, he can try Zelboraf, but it’s usually a temporary fix. There are a bunch of phase 3 trials using anti-pd1 which seems to be a good treatment, but for most trials, his brain would need to be stable for 8 weeks.
            • January 30, 2013 at 11:25 am
            jmmm
            Participant
              Make sure that he is being seen by a melanoma specialist! There have been big changes with melanona treatment over the past two years. Have they considered Yervoy (also called Ipi)? That’s a newer treatment with a higher response rate than il-2. if he’s BRaf positive, he can try Zelboraf, but it’s usually a temporary fix. There are a bunch of phase 3 trials using anti-pd1 which seems to be a good treatment, but for most trials, his brain would need to be stable for 8 weeks.
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