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nj-Mark

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      nj-Mark
      Participant

        Julie, I'm so sorry for your loss      

        nj-Mark
        Participant

          Julie, I'm so sorry for your loss      

          nj-Mark
          Participant

            James,

            I'm so sorry to hear of the loss of your son….

            I think we are in agreement here; if a drug gives someone an extra 6 months of life that is a great treatment result.    If a treatment doesn't add life expectancy I would want to carefully trade quality of life issues from treatment vs. letting things run their course.

            -Mark

            nj-Mark
            Participant

              James,

              I'm so sorry to hear of the loss of your son….

              I think we are in agreement here; if a drug gives someone an extra 6 months of life that is a great treatment result.    If a treatment doesn't add life expectancy I would want to carefully trade quality of life issues from treatment vs. letting things run their course.

              -Mark

              nj-Mark
              Participant

                Jen,

                Thanks so much for sharing your experiences.   Sounds like you have experienced considerable side effects from your treatment but the verdict is still out on if it helped.   I certainly hope it does; you have gone through a lot!

                To help me with my personal decision about if I should undergo chemo/polychemo treatment I cross-posted my question to the MIF board and also got fairly tepid responses.   One well-informed poster said that "I can't think of any success stories with the agents you mention.  I have heard from those who had tumor regression, but not a cure."

                Perhaps the deciding factor for me today was reading the NYT's article on ethical considerations in the stage II PLX4032 trial.  (I was in that trial, and randomized to the PLX4032 wing.) 

                http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&pagewanted=1

                I could not believe the comments from doctors–one who has seen my case professionally–acknowledging the futility of DBIC (and by analogue Temador) treatments given that this is my prescribed next treatment regime.   We passed on polychemo approaches because even though they have higher response rates they showed no survival benefit over DBIC.   And they want me to try something they don't even think works?

                Best luck with your health,
                 -Mark

                nj-Mark
                Participant

                  Jen,

                  Thanks so much for sharing your experiences.   Sounds like you have experienced considerable side effects from your treatment but the verdict is still out on if it helped.   I certainly hope it does; you have gone through a lot!

                  To help me with my personal decision about if I should undergo chemo/polychemo treatment I cross-posted my question to the MIF board and also got fairly tepid responses.   One well-informed poster said that "I can't think of any success stories with the agents you mention.  I have heard from those who had tumor regression, but not a cure."

                  Perhaps the deciding factor for me today was reading the NYT's article on ethical considerations in the stage II PLX4032 trial.  (I was in that trial, and randomized to the PLX4032 wing.) 

                  http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&pagewanted=1

                  I could not believe the comments from doctors–one who has seen my case professionally–acknowledging the futility of DBIC (and by analogue Temador) treatments given that this is my prescribed next treatment regime.   We passed on polychemo approaches because even though they have higher response rates they showed no survival benefit over DBIC.   And they want me to try something they don't even think works?

                  Best luck with your health,
                   -Mark

                  nj-Mark
                  Participant

                    Kevin,

                    Thanks very much for sharing your experience.   Good luck on the IPI response and I trust you will continue to win the battle.

                    -Mark

                    nj-Mark
                    Participant

                      Kevin,

                      Thanks very much for sharing your experience.   Good luck on the IPI response and I trust you will continue to win the battle.

                      -Mark

                      nj-Mark
                      Participant

                        Kevin,

                        Thanks very much for sharing your experience.   Good luck on the IPI response and I trust you will continue to win the battle.

                        -Mark

                        nj-Mark
                        Participant

                          Kevin,

                          Thanks very much for sharing your experience.   Good luck on the IPI response and I trust you will continue to win the battle.

                          -Mark

                          nj-Mark
                          Participant

                            Hi Sandy,

                            This is a tough call, for sure.   I've also had two opinions–one from Sloan Kettering as well–and the attitude seems to be that we should "try something" even if it has a small chance of working.  SK admits that polychemo treatments don't demonstrate any overall survival benefit to DTIC/Temodar even though the initial response rates are higher.  

                            I appreciate the suggestions for alternate treatments (I'm working on a possible IPI trial).  But I'd really like to hear about *any* traditional chemo success stories.   I'm sure many people have experienced these treatments as they are so commonly offered.

                            Take care, Mark

                            nj-Mark
                            Participant

                              Hi Sandy,

                              This is a tough call, for sure.   I've also had two opinions–one from Sloan Kettering as well–and the attitude seems to be that we should "try something" even if it has a small chance of working.  SK admits that polychemo treatments don't demonstrate any overall survival benefit to DTIC/Temodar even though the initial response rates are higher.  

                              I appreciate the suggestions for alternate treatments (I'm working on a possible IPI trial).  But I'd really like to hear about *any* traditional chemo success stories.   I'm sure many people have experienced these treatments as they are so commonly offered.

                              Take care, Mark

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