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Zelboraf for NED barin mets?
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Zelboraf for NED barin mets?

› Forums › General Melanoma Community › Zelboraf for NED barin mets?

  • Post
    • January 18, 2012 at 7:08 am
    davidfromsingapore
    Participant

      I am sorry, but I am posting the same questions again.  I had 2 met removed via craniatomy and one via SRS.  Nothing in my body.  My oncologist at Mayo put me on Zelboraf.  My one remaining brain met is shrinking, and my last scans were clean.  I would like to know if there are patients out there who had brain mets and are on Zelboraf – like me.  How is it going?  What is your next step?  My side effects are brutal.  Loss of taste and hearing in left ear, general giddiness, loss of sight in right eye, and very tired all the time.

      I am sorry, but I am posting the same questions again.  I had 2 met removed via craniatomy and one via SRS.  Nothing in my body.  My oncologist at Mayo put me on Zelboraf.  My one remaining brain met is shrinking, and my last scans were clean.  I would like to know if there are patients out there who had brain mets and are on Zelboraf – like me.  How is it going?  What is your next step?  My side effects are brutal.  Loss of taste and hearing in left ear, general giddiness, loss of sight in right eye, and very tired all the time.  Docs don't know if it is due to drugs or disease (they think it is possible that I have leptomeningeal disease – meaning the cancer is attacking the meninges – or the lining of the nervous system).  I am 45 and before this I was pretty strong.  I am a runner and was running at least 20 K a week.  Now I can barely get out of bed soe days.  

      So – any positive thoughts from NED brain mets and Zelboraf patients would be appreciated.  

       

      Thanks, David

    Viewing 8 reply threads
    • Replies
        • January 20, 2012 at 7:51 am
        deardad
        Participant

          Hi David,

          Sorry that your side effects are so bad. Im not sure why your side effects are so bad, my dad has a single met removed via craniotomy and is on Zelboraf. I don't know if the Zelboraf has helped him to have clear MRI's so far or whether it was just a single met. He has sore joints and major hair loss but at the moment that's all, so your symptoms sound a lot more serious than his. Dad does get tired but not like that although he is 64 and not overly active. 

          I hope that its not leptomeningeal disease and just the drug.

          Hoping things improve for you.

          Nahmi from Melbourne

          • January 20, 2012 at 7:51 am
          deardad
          Participant

            Hi David,

            Sorry that your side effects are so bad. Im not sure why your side effects are so bad, my dad has a single met removed via craniotomy and is on Zelboraf. I don't know if the Zelboraf has helped him to have clear MRI's so far or whether it was just a single met. He has sore joints and major hair loss but at the moment that's all, so your symptoms sound a lot more serious than his. Dad does get tired but not like that although he is 64 and not overly active. 

            I hope that its not leptomeningeal disease and just the drug.

            Hoping things improve for you.

            Nahmi from Melbourne

            • January 20, 2012 at 7:51 am
            deardad
            Participant

              Hi David,

              Sorry that your side effects are so bad. Im not sure why your side effects are so bad, my dad has a single met removed via craniotomy and is on Zelboraf. I don't know if the Zelboraf has helped him to have clear MRI's so far or whether it was just a single met. He has sore joints and major hair loss but at the moment that's all, so your symptoms sound a lot more serious than his. Dad does get tired but not like that although he is 64 and not overly active. 

              I hope that its not leptomeningeal disease and just the drug.

              Hoping things improve for you.

              Nahmi from Melbourne

              • January 20, 2012 at 7:03 pm
              bdhf
              Participant

                David,

                Hi!  I had been thinking about your post and your response to my post the other day…and I finally met with my medical oncologist yesterday.  Right now they don't think I have any more tumors.  Still need to biopsy my lung (again) and my thyroid but we are 98% positive that they aren't melanoma.  So, that being said, I still have radiation to do on my tumor bed that was left after the craniotomy.  However, the doc doesn't recommend any other treatments.  She mentioned interferon, to which I said no thanks.  Too many side effects for no real measurable gain.  We asked about Zelboraf or any of the other drugs but she said they aren't for people without any tumors.  Short of that, I have no idea what to tell you…since you still have a remaining tumor, I would say that you should stay with the meds, see how it progresses/regresses and then go from there.  I am so sorry though that it seems to be causing so many horrible side effects…must be miserable.  Hang in there!!!!

                Brenda

                • January 20, 2012 at 7:03 pm
                bdhf
                Participant

                  David,

                  Hi!  I had been thinking about your post and your response to my post the other day…and I finally met with my medical oncologist yesterday.  Right now they don't think I have any more tumors.  Still need to biopsy my lung (again) and my thyroid but we are 98% positive that they aren't melanoma.  So, that being said, I still have radiation to do on my tumor bed that was left after the craniotomy.  However, the doc doesn't recommend any other treatments.  She mentioned interferon, to which I said no thanks.  Too many side effects for no real measurable gain.  We asked about Zelboraf or any of the other drugs but she said they aren't for people without any tumors.  Short of that, I have no idea what to tell you…since you still have a remaining tumor, I would say that you should stay with the meds, see how it progresses/regresses and then go from there.  I am so sorry though that it seems to be causing so many horrible side effects…must be miserable.  Hang in there!!!!

                  Brenda

                  • January 20, 2012 at 7:03 pm
                  bdhf
                  Participant

                    David,

                    Hi!  I had been thinking about your post and your response to my post the other day…and I finally met with my medical oncologist yesterday.  Right now they don't think I have any more tumors.  Still need to biopsy my lung (again) and my thyroid but we are 98% positive that they aren't melanoma.  So, that being said, I still have radiation to do on my tumor bed that was left after the craniotomy.  However, the doc doesn't recommend any other treatments.  She mentioned interferon, to which I said no thanks.  Too many side effects for no real measurable gain.  We asked about Zelboraf or any of the other drugs but she said they aren't for people without any tumors.  Short of that, I have no idea what to tell you…since you still have a remaining tumor, I would say that you should stay with the meds, see how it progresses/regresses and then go from there.  I am so sorry though that it seems to be causing so many horrible side effects…must be miserable.  Hang in there!!!!

                    Brenda

                    • January 21, 2012 at 4:13 pm
                    Ali
                    Participant

                      David, I just wanted you to know that when my Dr.s were discussing treatments they mentioned they have some patients on Zelboraf that continue to be disease free now 2 years later.  I had the impression that the effects were always pretty temporary, but maybe in some they are long term.  I am hoping that is the case for you.  Also hoping you get some relief of your symptoms.

                      Ali

                      • January 21, 2012 at 4:13 pm
                      Ali
                      Participant

                        David, I just wanted you to know that when my Dr.s were discussing treatments they mentioned they have some patients on Zelboraf that continue to be disease free now 2 years later.  I had the impression that the effects were always pretty temporary, but maybe in some they are long term.  I am hoping that is the case for you.  Also hoping you get some relief of your symptoms.

                        Ali

                        • January 21, 2012 at 4:13 pm
                        Ali
                        Participant

                          David, I just wanted you to know that when my Dr.s were discussing treatments they mentioned they have some patients on Zelboraf that continue to be disease free now 2 years later.  I had the impression that the effects were always pretty temporary, but maybe in some they are long term.  I am hoping that is the case for you.  Also hoping you get some relief of your symptoms.

                          Ali

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