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Update – Six year stage IV survivor
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Update – Six year stage IV survivor

› Forums › General Melanoma Community › Update – Six year stage IV survivor

  • Post
    • September 30, 2013 at 5:33 pm
    Eileen L
    Participant

      Hi to all. Haven't been on this board in many months, but for some reason have been thinking about the incredible support I have received from people here over my six year journey.

      I am a six year, Stage IV survivor currently on the Roche BRAF/MEK Phase Ib trial. Have been on the trial for about 15 months now with a great response. Have no FDG activity on PET and the one problematic tumor, which is on my right adrenal gland, went from 6 cm to 1.8cm. It is still hanging in there, hasn't changed in size over the course of multiple scans. I have never had the pleasure of NED status since my Stage IV status and have grown accepting of living with tumor in my body if it is well controlled with treatment.

      Over the past six months  have seen side effects of the therapy diminish greatly after the common battles with joint pains, mouth sores, drug rashes, fatigue, etc. Lingering side effects include hypersensitiviy to the sun, which I am managing fairly well. I even have a head to toe sun protective outfit to go to the beach in if I desire to do so. Quite fetching! Also have bouts of fatique and occasional joint pains. Mangeable given that I no longer work and have lots of flexibility in my schedule.

      That's about it. Glad to have this community available and thankful to all of you who are dedicated "posters!"

      Eileen L

      Stage IV survivor

       

    Viewing 14 reply threads
    • Replies
        • September 30, 2013 at 8:57 pm
        Mat
        Participant

          Thanks for posting this–6 years, that's awesome.  I've been on the GSK combo for 8 weeks as an initial treatment following diagnosis (w/ heavy tumor burden).  I felt great within days of starting and continue to feel great.  I have my first scan this week and am expecting good results.  Your continuing success with the treatment is very inspiring.

          • September 30, 2013 at 8:57 pm
          Mat
          Participant

            Thanks for posting this–6 years, that's awesome.  I've been on the GSK combo for 8 weeks as an initial treatment following diagnosis (w/ heavy tumor burden).  I felt great within days of starting and continue to feel great.  I have my first scan this week and am expecting good results.  Your continuing success with the treatment is very inspiring.

            • September 30, 2013 at 8:57 pm
            Mat
            Participant

              Thanks for posting this–6 years, that's awesome.  I've been on the GSK combo for 8 weeks as an initial treatment following diagnosis (w/ heavy tumor burden).  I felt great within days of starting and continue to feel great.  I have my first scan this week and am expecting good results.  Your continuing success with the treatment is very inspiring.

              • October 1, 2013 at 1:26 am
              BrianP
              Participant

                Awesome report Eileen.  Thanks for updating us.  I bet that beach outfit is quite fetching :).

                Brian

                • October 1, 2013 at 1:26 am
                BrianP
                Participant

                  Awesome report Eileen.  Thanks for updating us.  I bet that beach outfit is quite fetching :).

                  Brian

                  • October 1, 2013 at 1:26 am
                  BrianP
                  Participant

                    Awesome report Eileen.  Thanks for updating us.  I bet that beach outfit is quite fetching :).

                    Brian

                    • October 1, 2013 at 5:14 am
                    GAngel
                    Participant

                      Dear Eileen,

                      Praying for your continued response and success with treatment! You are very inspiring and bring hope that this treatment has longevity!  My husband has been on combo 9 weeks and so far so good!

                      Keep on being a survivor!

                      God bless you and yours,

                      Gina

                      • October 1, 2013 at 5:14 am
                      GAngel
                      Participant

                        Dear Eileen,

                        Praying for your continued response and success with treatment! You are very inspiring and bring hope that this treatment has longevity!  My husband has been on combo 9 weeks and so far so good!

                        Keep on being a survivor!

                        God bless you and yours,

                        Gina

                        • October 1, 2013 at 5:14 am
                        GAngel
                        Participant

                          Dear Eileen,

                          Praying for your continued response and success with treatment! You are very inspiring and bring hope that this treatment has longevity!  My husband has been on combo 9 weeks and so far so good!

                          Keep on being a survivor!

                          God bless you and yours,

                          Gina

                          • October 1, 2013 at 11:31 pm
                          kpcollins31
                          Participant

                            Congratulations – always good to hear the success stories.

                            Kevin

                            • October 1, 2013 at 11:31 pm
                            kpcollins31
                            Participant

                              Congratulations – always good to hear the success stories.

                              Kevin

                              • October 1, 2013 at 11:31 pm
                              kpcollins31
                              Participant

                                Congratulations – always good to hear the success stories.

                                Kevin

                                • October 2, 2013 at 6:50 am
                                MaryD
                                Participant

                                  Hi Eileen,

                                  I think you are the same Eileen I met in San Francisco some years back at a seminar – had been wondering how you were doing.

                                  So glad the Braf/MEK combination is working so well for you and that the side effects are diminishing so that you can just enjoy life  🙂

                                  I just reached my 5 year NED milestone which I could never have imagined some years back – it's good to hear that more and more of us Stage IV folks are stable and doing well with the new ammunition we have to fight it.

                                  Wishing you continued good luck!

                                  Mary

                                   

                                  • October 2, 2013 at 6:50 am
                                  MaryD
                                  Participant

                                    Hi Eileen,

                                    I think you are the same Eileen I met in San Francisco some years back at a seminar – had been wondering how you were doing.

                                    So glad the Braf/MEK combination is working so well for you and that the side effects are diminishing so that you can just enjoy life  🙂

                                    I just reached my 5 year NED milestone which I could never have imagined some years back – it's good to hear that more and more of us Stage IV folks are stable and doing well with the new ammunition we have to fight it.

                                    Wishing you continued good luck!

                                    Mary

                                     

                                    • October 2, 2013 at 6:50 am
                                    MaryD
                                    Participant

                                      Hi Eileen,

                                      I think you are the same Eileen I met in San Francisco some years back at a seminar – had been wondering how you were doing.

                                      So glad the Braf/MEK combination is working so well for you and that the side effects are diminishing so that you can just enjoy life  🙂

                                      I just reached my 5 year NED milestone which I could never have imagined some years back – it's good to hear that more and more of us Stage IV folks are stable and doing well with the new ammunition we have to fight it.

                                      Wishing you continued good luck!

                                      Mary

                                       

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