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7 months, still responding!

Forums General Melanoma Community 7 months, still responding!

  • Post

    I just had my 11th cycle CT scan for the B-raf trial and I am still responding!  The 8th cycle CT scan showed stable disease so I was sure that this time it was going to show progression but instead it showed slight shrinking still!  Yahoo and Amen!   I am so ready to be done thinking about this for awhile.  My side effects have very minimal so I am feeling very healthy.  I DO have curly and thinning  hair now…

    I just had my 11th cycle CT scan for the B-raf trial and I am still responding!  The 8th cycle CT scan showed stable disease so I was sure that this time it was going to show progression but instead it showed slight shrinking still!  Yahoo and Amen!   I am so ready to be done thinking about this for awhile.  My side effects have very minimal so I am feeling very healthy.  I DO have curly and thinning  hair now… anyone else have this side effect?  Something I can live with.  FYI I also have iritis almost monthly that I have to use steroid eye drops for but I can deal with that as well as the arthritis flare-ups.  All in all I feel great and ready to march forward.  I am even thinking of joining a gym here in Basel as well as start substitute teaching! 

    I thank God for this continued response and continue to pray for everyone on this board.

    Peace and joy,

    Shelly

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      sukie53
      Participant
        Hi Shelley,
        I am so happy to hear your wonderful news! I am on my 5th cycle so am following your progress with great interest. My first scan showed a huge reduction in tumour burden but the second one showed only slight shrinkage so I was a little disappointed. You have given me hope that mel will continue to shrink.
        I too have had little in the way of side effects but hair is very thin and I have treated myself to a wig – looks kinda nice actually. Wondering whether it will start to grow back whilst still taking the drug.
        Hope you continue to do so well,
        Xsukie

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        sukie53
        Participant
          Hi Shelley,
          I am so happy to hear your wonderful news! I am on my 5th cycle so am following your progress with great interest. My first scan showed a huge reduction in tumour burden but the second one showed only slight shrinkage so I was a little disappointed. You have given me hope that mel will continue to shrink.
          I too have had little in the way of side effects but hair is very thin and I have treated myself to a wig – looks kinda nice actually. Wondering whether it will start to grow back whilst still taking the drug.
          Hope you continue to do so well,
          Xsukie

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            I pray that you have continued response as well.  My hair was thinnng so much last fall that I thought I too would be in a wig by Christmas.   Then it started curling so it kind of covered the thinness, the 'almost' bare spots were less obivious.  Right now.. it feels like it has stopped thinning and it has started growing longer.  (I had also felt it must have been breaking off because my normally short haircut seemed to be getting shorter…  LOL )   I am hoping that Switzerland will have a clinical for braf/mek going if/when I progress.  Prof. Dummer felt this would be a great next step since I am responding to the b-raf. 

            Take care andsending you lots of prayers and blessings,

            Shelly

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            I pray that you have continued response as well.  My hair was thinnng so much last fall that I thought I too would be in a wig by Christmas.   Then it started curling so it kind of covered the thinness, the 'almost' bare spots were less obivious.  Right now.. it feels like it has stopped thinning and it has started growing longer.  (I had also felt it must have been breaking off because my normally short haircut seemed to be getting shorter…  LOL )   I am hoping that Switzerland will have a clinical for braf/mek going if/when I progress.  Prof. Dummer felt this would be a great next step since I am responding to the b-raf. 

            Take care andsending you lots of prayers and blessings,

            Shelly

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          lhaley
          Participant

            Keep it up Shelly!  I am so happy for you and also for what it means for others doing this drug.

            Linda

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            lhaley
            Participant

              Keep it up Shelly!  I am so happy for you and also for what it means for others doing this drug.

              Linda

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              Kim K
              Participant

                So glad to hear, I think of you often.

                Kim

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                Kim K
                Participant

                  So glad to hear, I think of you often.

                  Kim

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                    Hey Kim ,

                    I keep up with you too since we seemed to be at the same spot last winter/spring.  It sounds like you are doing great!  I am so happy for your response.  I have had you in the back of my mind as a resource if I have to consider IL-2.  Of course the doctors here in Europe are strongly opposed to it but I will have my US Cobra insurance for one more year…

                    Take care and enjoy life!

                    With continued prayers,

                    Shelly

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                    Hey Kim ,

                    I keep up with you too since we seemed to be at the same spot last winter/spring.  It sounds like you are doing great!  I am so happy for your response.  I have had you in the back of my mind as a resource if I have to consider IL-2.  Of course the doctors here in Europe are strongly opposed to it but I will have my US Cobra insurance for one more year…

                    Take care and enjoy life!

                    With continued prayers,

                    Shelly

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                    Vermont_Donna
                    Participant

                      Hi Shelley,

                      SO GLAD to hear this news!!!! I think about you everyday!!! Slow down girl…the gym and work??? Start with the gym….I am going to start this next week too.

                      I am sorry I didnt respond sooner..was at DHMC for my third round of ipi!!

                      Thinking positive thoughts still!!

                      Hugs,

                      Donna

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                      Vermont_Donna
                      Participant

                        Hi Shelley,

                        SO GLAD to hear this news!!!! I think about you everyday!!! Slow down girl…the gym and work??? Start with the gym….I am going to start this next week too.

                        I am sorry I didnt respond sooner..was at DHMC for my third round of ipi!!

                        Thinking positive thoughts still!!

                        Hugs,

                        Donna

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