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Zelboraf and brain mets
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Zelboraf and brain mets

› Forums › General Melanoma Community › Zelboraf and brain mets

  • Post
    • May 1, 2013 at 1:08 am
    MaryD
    Participant

      Does anyone have feedback about using Zelboraf with brain mets present?   For those of you who know our dear Nancy D,   she has completed WBR and a tumor harvested 8 years ago tested positive for the Braf mutation.

      Tomorrow Nancy is having complete scans of her brain to see if there has been shinkag of the brain mets and also of the of her body to determine if there is evidence of any other disease sites.

      Praying hard that Zelboraf may be an option for her . . .

      Thank you for any feedback you can share,

      Mary

      Does anyone have feedback about using Zelboraf with brain mets present?   For those of you who know our dear Nancy D,   she has completed WBR and a tumor harvested 8 years ago tested positive for the Braf mutation.

      Tomorrow Nancy is having complete scans of her brain to see if there has been shinkag of the brain mets and also of the of her body to determine if there is evidence of any other disease sites.

      Praying hard that Zelboraf may be an option for her . . .

      Thank you for any feedback you can share,

      Mary

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    • Replies
        • May 1, 2013 at 1:45 am
        jmmm
        Participant
          My husband started Zelboraf when they found a huge brain tumor (5cm x 6cm)…the Zelboraf shrunk it a bit after a month…not enough for gamma knife, but it did shrink. His oncologist and neurologist actually wrote a medical journal article on his brain tumor. The pathology of the brain tumor showed “treated cells,” which they took to mean the Zelboraf crossed the blood brain barrier. Zelboraf has been his miracle drug…18 months and counting:). Best of luck to your friend.
          • May 1, 2013 at 1:45 am
          jmmm
          Participant
            My husband started Zelboraf when they found a huge brain tumor (5cm x 6cm)…the Zelboraf shrunk it a bit after a month…not enough for gamma knife, but it did shrink. His oncologist and neurologist actually wrote a medical journal article on his brain tumor. The pathology of the brain tumor showed “treated cells,” which they took to mean the Zelboraf crossed the blood brain barrier. Zelboraf has been his miracle drug…18 months and counting:). Best of luck to your friend.
            • May 1, 2013 at 1:45 am
            jmmm
            Participant
              My husband started Zelboraf when they found a huge brain tumor (5cm x 6cm)…the Zelboraf shrunk it a bit after a month…not enough for gamma knife, but it did shrink. His oncologist and neurologist actually wrote a medical journal article on his brain tumor. The pathology of the brain tumor showed “treated cells,” which they took to mean the Zelboraf crossed the blood brain barrier. Zelboraf has been his miracle drug…18 months and counting:). Best of luck to your friend.
              • May 1, 2013 at 2:45 am
              awillett1991
              Participant
                I also had good luck with Zelboraf shrinking a brain met, but not eliminating it. Also though it prevented anything new. Been on it two separate times. In the last year.

                Amy

                • May 1, 2013 at 2:45 am
                awillett1991
                Participant
                  I also had good luck with Zelboraf shrinking a brain met, but not eliminating it. Also though it prevented anything new. Been on it two separate times. In the last year.

                  Amy

                  • May 1, 2013 at 2:45 am
                  awillett1991
                  Participant
                    I also had good luck with Zelboraf shrinking a brain met, but not eliminating it. Also though it prevented anything new. Been on it two separate times. In the last year.

                    Amy

                    • May 1, 2013 at 11:02 am
                    POW
                    Participant

                      My completely  non-scientific sense of things is that Zelboraf does work to shrink brain tumors but not as well as it works on non-brain tumors. It seems to be common that one or two new small brain mets appear while on Zelboraf. These are usually easily treated with a cyberknife. But as I say, this is just the sense I have gotten from other people's stories.

                      • May 1, 2013 at 11:02 am
                      POW
                      Participant

                        My completely  non-scientific sense of things is that Zelboraf does work to shrink brain tumors but not as well as it works on non-brain tumors. It seems to be common that one or two new small brain mets appear while on Zelboraf. These are usually easily treated with a cyberknife. But as I say, this is just the sense I have gotten from other people's stories.

                        • May 1, 2013 at 11:02 am
                        POW
                        Participant

                          My completely  non-scientific sense of things is that Zelboraf does work to shrink brain tumors but not as well as it works on non-brain tumors. It seems to be common that one or two new small brain mets appear while on Zelboraf. These are usually easily treated with a cyberknife. But as I say, this is just the sense I have gotten from other people's stories.

                          • May 5, 2013 at 3:00 am
                          dellriol
                          Participant

                            I am currently in a clinical trial for Z with Brain mets.  Only have one met in brain and several in lungs. I've been on it for just over a year.  It did shrink my brain met, and more importantly I have had NO NEW mets on Zel.  Side effects aren't a major issue for me. We did drop the dose to 720 due to liver issues, but since then the side effects have been easily manageable.   Good luck!

                            • May 5, 2013 at 3:00 am
                            dellriol
                            Participant

                              I am currently in a clinical trial for Z with Brain mets.  Only have one met in brain and several in lungs. I've been on it for just over a year.  It did shrink my brain met, and more importantly I have had NO NEW mets on Zel.  Side effects aren't a major issue for me. We did drop the dose to 720 due to liver issues, but since then the side effects have been easily manageable.   Good luck!

                              • May 5, 2013 at 3:00 am
                              dellriol
                              Participant

                                I am currently in a clinical trial for Z with Brain mets.  Only have one met in brain and several in lungs. I've been on it for just over a year.  It did shrink my brain met, and more importantly I have had NO NEW mets on Zel.  Side effects aren't a major issue for me. We did drop the dose to 720 due to liver issues, but since then the side effects have been easily manageable.   Good luck!

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