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Zelboraf Update
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Zelboraf Update

› Forums › General Melanoma Community › Zelboraf Update

  • Post
    • May 9, 2013 at 4:02 pm
    aldakota22
    Participant

      Tomorrow marks 20 months I have been on "Z".I am extremely happy with that milestoneThere are still issues I face . Aprils Cat scans showed small  spotsin the brain .With subsuquent  MRI, melanoma is detected.Will have additional scans in late June to monitor  them.Praying that with Gods help and"Z" that all will be good.

      Tomorrow marks 20 months I have been on "Z".I am extremely happy with that milestoneThere are still issues I face . Aprils Cat scans showed small  spotsin the brain .With subsuquent  MRI, melanoma is detected.Will have additional scans in late June to monitor  them.Praying that with Gods help and"Z" that all will be good. Keeping my PMA at high level.Like all here striving to change name to NED.All in all feel great and live normal.Just retired in Feb from 2nd career at USPS and I am now collecting  early Socilal Security.Physical side affects on "Z" have been more of a nusance than serious.Never thought at this stage of life that planning for the future would be based on access to major melanoma centers.So be it.Beat the Beast.  Al

    Viewing 11 reply threads
    • Replies
        • May 9, 2013 at 4:42 pm
        WayneG
        Participant

          Troubling I know, but you have the PMA to beat the beast!  Praying that the latest news is only a bump in your journey.

          Not retired yet – another 2 years away – but we too are planning based on melanoma center access… 

          Wayne

          • May 9, 2013 at 4:42 pm
          WayneG
          Participant

            Troubling I know, but you have the PMA to beat the beast!  Praying that the latest news is only a bump in your journey.

            Not retired yet – another 2 years away – but we too are planning based on melanoma center access… 

            Wayne

            • May 9, 2013 at 4:42 pm
            WayneG
            Participant

              Troubling I know, but you have the PMA to beat the beast!  Praying that the latest news is only a bump in your journey.

              Not retired yet – another 2 years away – but we too are planning based on melanoma center access… 

              Wayne

              • May 9, 2013 at 8:26 pm
              kylez
              Participant

                Hey Al, 

                What is your doc saying about the possibility of SRS? I saw a recent webinar by Dr. Veronica Chiang of Yale over at another site. She said at Yale they don't like to wait and watch for SRS to the brain, they like to do it as early as possible, immediately after detecion. I believe they're primarily a Gamma Knife site when it comes to melanoma brain mets. 

                Congrats on how stable Zel has been keeping you. 

                Also congrats on retiring. I bet it's nice to have more time to deal with health issues and be able to rest a little bit.

                Best, Kyle

                • May 9, 2013 at 8:26 pm
                kylez
                Participant

                  Hey Al, 

                  What is your doc saying about the possibility of SRS? I saw a recent webinar by Dr. Veronica Chiang of Yale over at another site. She said at Yale they don't like to wait and watch for SRS to the brain, they like to do it as early as possible, immediately after detecion. I believe they're primarily a Gamma Knife site when it comes to melanoma brain mets. 

                  Congrats on how stable Zel has been keeping you. 

                  Also congrats on retiring. I bet it's nice to have more time to deal with health issues and be able to rest a little bit.

                  Best, Kyle

                  • May 9, 2013 at 8:26 pm
                  kylez
                  Participant

                    Hey Al, 

                    What is your doc saying about the possibility of SRS? I saw a recent webinar by Dr. Veronica Chiang of Yale over at another site. She said at Yale they don't like to wait and watch for SRS to the brain, they like to do it as early as possible, immediately after detecion. I believe they're primarily a Gamma Knife site when it comes to melanoma brain mets. 

                    Congrats on how stable Zel has been keeping you. 

                    Also congrats on retiring. I bet it's nice to have more time to deal with health issues and be able to rest a little bit.

                    Best, Kyle

                    • May 9, 2013 at 9:14 pm
                    awillett1991
                    Participant
                      Al – wondering how you’ve been doing, so thanks for posting. Glad the Zel is working for most of you, sort of agree with Kyle though that it surprises me they want to watch and wait on these new spots. How many are there?

                      Vandy was also very greasiest with mine, found them, then zapped them a week later. I have heard more and more of folks that can stay on Zel but having to use SRS to control the brain.

                      I have faith your fighting spirit will see you through!

                      Amy

                        • May 10, 2013 at 12:27 am
                        killmel
                        Participant

                          I am getting ready to have srs.

                          Please Can anyone tell their experience What were your side effects:headache loss of hair? Did you need to take steroids?

                           

                          • May 10, 2013 at 12:27 am
                          killmel
                          Participant

                            I am getting ready to have srs.

                            Please Can anyone tell their experience What were your side effects:headache loss of hair? Did you need to take steroids?

                             

                            • May 10, 2013 at 12:27 am
                            killmel
                            Participant

                              I am getting ready to have srs.

                              Please Can anyone tell their experience What were your side effects:headache loss of hair? Did you need to take steroids?

                               

                              • May 10, 2013 at 10:34 am
                              buffcody
                              Participant

                                You may find more info on your questions by using the search on the site.  I had SRS in December on two sub-centimeter tumors.  The procedure was an all-day enterprise.  Uncomfortable but only annoyingly painful when they unscrewed the holders for my helmet after finishing.  I had absolutely no side effects afterwards.  One of the two tumors has now disappeared.  The other one has been more uncertain.  The original determination was that it was showing signs of inflammation due to the SRS combined with the ipi I was on at the time.  The inflamed area has grown some over the last months, though, and it is now uncertain whether the intervention shrunk the tumor or not.  My next MRI at the end of the month should provide more info about the next step.  A craniotomy has been mentioned to remove this one.

                                • May 10, 2013 at 10:34 am
                                buffcody
                                Participant

                                  You may find more info on your questions by using the search on the site.  I had SRS in December on two sub-centimeter tumors.  The procedure was an all-day enterprise.  Uncomfortable but only annoyingly painful when they unscrewed the holders for my helmet after finishing.  I had absolutely no side effects afterwards.  One of the two tumors has now disappeared.  The other one has been more uncertain.  The original determination was that it was showing signs of inflammation due to the SRS combined with the ipi I was on at the time.  The inflamed area has grown some over the last months, though, and it is now uncertain whether the intervention shrunk the tumor or not.  My next MRI at the end of the month should provide more info about the next step.  A craniotomy has been mentioned to remove this one.

                                  • May 10, 2013 at 10:34 am
                                  buffcody
                                  Participant

                                    You may find more info on your questions by using the search on the site.  I had SRS in December on two sub-centimeter tumors.  The procedure was an all-day enterprise.  Uncomfortable but only annoyingly painful when they unscrewed the holders for my helmet after finishing.  I had absolutely no side effects afterwards.  One of the two tumors has now disappeared.  The other one has been more uncertain.  The original determination was that it was showing signs of inflammation due to the SRS combined with the ipi I was on at the time.  The inflamed area has grown some over the last months, though, and it is now uncertain whether the intervention shrunk the tumor or not.  My next MRI at the end of the month should provide more info about the next step.  A craniotomy has been mentioned to remove this one.

                                  • May 9, 2013 at 9:14 pm
                                  awillett1991
                                  Participant
                                    Al – wondering how you’ve been doing, so thanks for posting. Glad the Zel is working for most of you, sort of agree with Kyle though that it surprises me they want to watch and wait on these new spots. How many are there?

                                    Vandy was also very greasiest with mine, found them, then zapped them a week later. I have heard more and more of folks that can stay on Zel but having to use SRS to control the brain.

                                    I have faith your fighting spirit will see you through!

                                    Amy

                                    • May 9, 2013 at 9:14 pm
                                    awillett1991
                                    Participant
                                      Al – wondering how you’ve been doing, so thanks for posting. Glad the Zel is working for most of you, sort of agree with Kyle though that it surprises me they want to watch and wait on these new spots. How many are there?

                                      Vandy was also very greasiest with mine, found them, then zapped them a week later. I have heard more and more of folks that can stay on Zel but having to use SRS to control the brain.

                                      I have faith your fighting spirit will see you through!

                                      Amy

                                      • May 13, 2013 at 11:05 pm
                                      aldakota22
                                      Participant

                                        Thanks for the info and encouragement.Doc 's experience is that she feels that "Z" may be all that is needed if given time .As long as stable its wait till the next  MRI in June .Keeping my PMA and faith that all will be OK with next Doc's visit at end of June.Really feeling great and thankful since I have been on "Z" for 20+months. Beat the Beast.   Al

                                        • May 13, 2013 at 11:05 pm
                                        aldakota22
                                        Participant

                                          Thanks for the info and encouragement.Doc 's experience is that she feels that "Z" may be all that is needed if given time .As long as stable its wait till the next  MRI in June .Keeping my PMA and faith that all will be OK with next Doc's visit at end of June.Really feeling great and thankful since I have been on "Z" for 20+months. Beat the Beast.   Al

                                            • May 14, 2013 at 12:20 am
                                            awillett1991
                                            Participant
                                              Glad you feel so great Al! Keep up the fight!

                                              Amy

                                              • May 14, 2013 at 12:20 am
                                              awillett1991
                                              Participant
                                                Glad you feel so great Al! Keep up the fight!

                                                Amy

                                                • May 14, 2013 at 12:20 am
                                                awillett1991
                                                Participant
                                                  Glad you feel so great Al! Keep up the fight!

                                                  Amy

                                                • May 13, 2013 at 11:05 pm
                                                aldakota22
                                                Participant

                                                  Thanks for the info and encouragement.Doc 's experience is that she feels that "Z" may be all that is needed if given time .As long as stable its wait till the next  MRI in June .Keeping my PMA and faith that all will be OK with next Doc's visit at end of June.Really feeling great and thankful since I have been on "Z" for 20+months. Beat the Beast.   Al

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