Unbelievable News!
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Unbelievable News!

› Forums › Cutaneous Melanoma Community › Unbelievable News!

  • Post
    • December 13, 2012 at 4:20 am
    NYKaren
    Participant

      Hi everyone,

      I read on here (I think) that someone was retested for BRAF and came back positive.  So I went to Dr. Wolchok and said that I'd read that someone was re-tested after a recurrence…long story short, he called me tonight and told that I AM BRAF POSITIVE!!!  He was surprised, and so was Dr. Halpern (my onc derm who did the biopsy) and they couldn't wait to give me the news!  Needless to say, I burst out in tears on the phone.  I really love my team at Sloan.

      Hi everyone,

      I read on here (I think) that someone was retested for BRAF and came back positive.  So I went to Dr. Wolchok and said that I'd read that someone was re-tested after a recurrence…long story short, he called me tonight and told that I AM BRAF POSITIVE!!!  He was surprised, and so was Dr. Halpern (my onc derm who did the biopsy) and they couldn't wait to give me the news!  Needless to say, I burst out in tears on the phone.  I really love my team at Sloan.

      So I am to start Zelboraf.  As many of you know, I'm stage IIIc unresectable–had an immediate recurrence after resection, so I've had mel for 2 years now.  thankfully, unless something shows on next week's PET scan, it's remained cutaneous,  but is goes from my scalp down under my chin and one side of my neck.  It is also in my ear canal and I'm at high risk for losing my hearing and my ear.  It has noticeably traveled further down the canal recently.  

      I'm in in a clinical trial for DCPC, I actually have an appointment tomorrow…I am due for a biopsy there, and Dr. Wolchok says it's up to them if they want to keep me.  I can't put my hands on the trial documents, so I don't know if I'm allowed to be on another treatment at the same time.   It's pretty early in the game to see if the DCPC is working, but I'm certainly not going to let an opportunity to be on Z go by.  

      Dr. W. confirmed that they are using a new BRAF test, we we really don't know if it's because I'm dealing with recurrence or it's the test.

      I'll keep you posted.

      Hey Al, maybe it was your good vibes!

      hugs to everyone,

      Karen 

    Viewing 11 reply threads
    • Replies
        • December 13, 2012 at 4:32 am
        aldakota22
        Participant

          Fantastic, I always send positive vibes your way so maybe it was.Pray that you are a complete responder to "Z".This news is awesome.Bet you just want to shout from the highest mountain how lucky & happy you are.Thank God you were retested for BRAF +.Thanks for giving us all an early Christmas present.We will Beat the Beast.   Al

          • December 13, 2012 at 4:32 am
          aldakota22
          Participant

            Fantastic, I always send positive vibes your way so maybe it was.Pray that you are a complete responder to "Z".This news is awesome.Bet you just want to shout from the highest mountain how lucky & happy you are.Thank God you were retested for BRAF +.Thanks for giving us all an early Christmas present.We will Beat the Beast.   Al

            • December 13, 2012 at 4:32 am
            aldakota22
            Participant

              Fantastic, I always send positive vibes your way so maybe it was.Pray that you are a complete responder to "Z".This news is awesome.Bet you just want to shout from the highest mountain how lucky & happy you are.Thank God you were retested for BRAF +.Thanks for giving us all an early Christmas present.We will Beat the Beast.   Al

              • December 13, 2012 at 4:39 am
              POW
              Participant

                Oh, good for you, Karen! That is fantastic news! I'm so glad that you picked up some information here that led to you being able to take Zelboraf. We are all fortunate to be part of such a wonderfully supportive community. Good luck with the Zel! 

                • December 13, 2012 at 4:39 am
                POW
                Participant

                  Oh, good for you, Karen! That is fantastic news! I'm so glad that you picked up some information here that led to you being able to take Zelboraf. We are all fortunate to be part of such a wonderfully supportive community. Good luck with the Zel! 

                    • December 13, 2012 at 4:56 am
                    NYKaren
                    Participant
                      Thank you both. Al, you reminded me, I have to thank Dr W for the fabulous Chanukah gift. So many questions and concerns about side-effects, etc. that I doubt I can sleep.
                      Question: do you use sunscreen on all visible areas 365 days a year?
                      Have a good night,
                      Karen
                      • December 13, 2012 at 4:56 am
                      NYKaren
                      Participant
                        Thank you both. Al, you reminded me, I have to thank Dr W for the fabulous Chanukah gift. So many questions and concerns about side-effects, etc. that I doubt I can sleep.
                        Question: do you use sunscreen on all visible areas 365 days a year?
                        Have a good night,
                        Karen
                        • December 13, 2012 at 11:43 am
                        Linny
                        Participant

                          Karen, don't forget that you can buy clothing that's got sunscreen in it. Google Coolibar. They have some really nice clothing in their catalogue. They're great to deal with, too.

                          • December 13, 2012 at 11:43 am
                          Linny
                          Participant

                            Karen, don't forget that you can buy clothing that's got sunscreen in it. Google Coolibar. They have some really nice clothing in their catalogue. They're great to deal with, too.

                            • December 13, 2012 at 11:43 am
                            Linny
                            Participant

                              Karen, don't forget that you can buy clothing that's got sunscreen in it. Google Coolibar. They have some really nice clothing in their catalogue. They're great to deal with, too.

                              • December 13, 2012 at 4:56 am
                              NYKaren
                              Participant
                                Thank you both. Al, you reminded me, I have to thank Dr W for the fabulous Chanukah gift. So many questions and concerns about side-effects, etc. that I doubt I can sleep.
                                Question: do you use sunscreen on all visible areas 365 days a year?
                                Have a good night,
                                Karen
                              • December 13, 2012 at 4:39 am
                              POW
                              Participant

                                Oh, good for you, Karen! That is fantastic news! I'm so glad that you picked up some information here that led to you being able to take Zelboraf. We are all fortunate to be part of such a wonderfully supportive community. Good luck with the Zel! 

                                • December 13, 2012 at 11:41 am
                                Linny
                                Participant

                                  Karen, this is great news! This is not the first I've read of this. There's a lady on the Melanoma International Board who also intially tested negative for BRAF and then when retested after a surgery she'd had, she tested BRAF positive. Maybe it was the surgery, maybe it was the lab the samples were sent to but regardless, it certainly opens up more treatment options.

                                  This is probably THE best holiday gift ever, for you! Congratulations.

                                  • December 13, 2012 at 11:41 am
                                  Linny
                                  Participant

                                    Karen, this is great news! This is not the first I've read of this. There's a lady on the Melanoma International Board who also intially tested negative for BRAF and then when retested after a surgery she'd had, she tested BRAF positive. Maybe it was the surgery, maybe it was the lab the samples were sent to but regardless, it certainly opens up more treatment options.

                                    This is probably THE best holiday gift ever, for you! Congratulations.

                                    • December 13, 2012 at 11:41 am
                                    Linny
                                    Participant

                                      Karen, this is great news! This is not the first I've read of this. There's a lady on the Melanoma International Board who also intially tested negative for BRAF and then when retested after a surgery she'd had, she tested BRAF positive. Maybe it was the surgery, maybe it was the lab the samples were sent to but regardless, it certainly opens up more treatment options.

                                      This is probably THE best holiday gift ever, for you! Congratulations.

                                      • December 18, 2012 at 2:06 am
                                      lhaley
                                      Participant

                                        Karen,

                                        It's so exciting that they retested you and were able to put you on zelboraf!  

                                        Being winter it will be much easier to learn to stay out of the sun.  While on it I started to buy some clothes on the computer from Coolibar.  While I was on it for 4 months I wore a hat (spf 50) and actually went tailgating in and out of the sun and never was burned. 

                                        I hope that Z is the answer for you! 

                                        Linda

                                        • December 18, 2012 at 2:06 am
                                        lhaley
                                        Participant

                                          Karen,

                                          It's so exciting that they retested you and were able to put you on zelboraf!  

                                          Being winter it will be much easier to learn to stay out of the sun.  While on it I started to buy some clothes on the computer from Coolibar.  While I was on it for 4 months I wore a hat (spf 50) and actually went tailgating in and out of the sun and never was burned. 

                                          I hope that Z is the answer for you! 

                                          Linda

                                          • December 18, 2012 at 2:06 am
                                          lhaley
                                          Participant

                                            Karen,

                                            It's so exciting that they retested you and were able to put you on zelboraf!  

                                            Being winter it will be much easier to learn to stay out of the sun.  While on it I started to buy some clothes on the computer from Coolibar.  While I was on it for 4 months I wore a hat (spf 50) and actually went tailgating in and out of the sun and never was burned. 

                                            I hope that Z is the answer for you! 

                                            Linda

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