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scots

Forum Replies Created

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  • Replies
      • February 28, 2016 at 1:04 am
      scots
      Participant

        Your family is in my prayers.

        Scot

         

        • February 28, 2016 at 1:04 am
        scots
        Participant

          Your family is in my prayers.

          Scot

           

          • February 28, 2016 at 1:04 am
          scots
          Participant

            Your family is in my prayers.

            Scot

             

            • February 20, 2016 at 9:10 am
            scots
            Participant

              congrats on 10 years.

              Scot

              • February 20, 2016 at 9:10 am
              scots
              Participant

                congrats on 10 years.

                Scot

                • February 20, 2016 at 9:10 am
                scots
                Participant

                  congrats on 10 years.

                  Scot

                  • April 19, 2016 at 7:38 pm
                  scots
                  Participant

                    Neil,

                    i do not have the nras or braf mutation. I have a MEK mutation which appears to be rare.  I have liver mets.

                    i have been to several hospitals. I'm now getting ready to be treated at Memorial Sloan Kettering Cancer Center In New York City.  The research trial is called the 'ERK' research trial. There is a protocol #.  Now  we just need more testing on rare mutations,

                     

                    Scot

                    • April 19, 2016 at 7:38 pm
                    scots
                    Participant

                      Neil,

                      i do not have the nras or braf mutation. I have a MEK mutation which appears to be rare.  I have liver mets.

                      i have been to several hospitals. I'm now getting ready to be treated at Memorial Sloan Kettering Cancer Center In New York City.  The research trial is called the 'ERK' research trial. There is a protocol #.  Now  we just need more testing on rare mutations,

                       

                      Scot

                      • April 19, 2016 at 7:38 pm
                      scots
                      Participant

                        Neil,

                        i do not have the nras or braf mutation. I have a MEK mutation which appears to be rare.  I have liver mets.

                        i have been to several hospitals. I'm now getting ready to be treated at Memorial Sloan Kettering Cancer Center In New York City.  The research trial is called the 'ERK' research trial. There is a protocol #.  Now  we just need more testing on rare mutations,

                         

                        Scot

                        • February 28, 2016 at 1:08 am
                        scots
                        Participant

                          Are you currently in a trial? if so what is the trial?

                          Scot

                          • February 28, 2016 at 1:08 am
                          scots
                          Participant

                            Are you currently in a trial? if so what is the trial?

                            Scot

                            • February 28, 2016 at 1:08 am
                            scots
                            Participant

                              Are you currently in a trial? if so what is the trial?

                              Scot

                              • February 8, 2016 at 4:44 pm
                              scots
                              Participant

                                Yes that was Dr. Salama trying to Get the insurance company to approve the MEK inhibitor because it is only approved for braf patients when the braf drugs no longer are working.They did not approve it for me so they are are going through the appeal process now, but that could take months.  She does have a clinical trial that they are trying to get me into. That could start next week.  I'm hoping that MSKCC in NY will have something to offer me.  That what make is so hard because there is not one repository for this information. If doctors would request it …. It's free..  Some offices will not do it. If I request it and ask for additional copies some place charge for my information . Thanks for the reply

                                scot

                                • February 8, 2016 at 4:44 pm
                                scots
                                Participant

                                  Yes that was Dr. Salama trying to Get the insurance company to approve the MEK inhibitor because it is only approved for braf patients when the braf drugs no longer are working.They did not approve it for me so they are are going through the appeal process now, but that could take months.  She does have a clinical trial that they are trying to get me into. That could start next week.  I'm hoping that MSKCC in NY will have something to offer me.  That what make is so hard because there is not one repository for this information. If doctors would request it …. It's free..  Some offices will not do it. If I request it and ask for additional copies some place charge for my information . Thanks for the reply

                                  scot

                                  • February 8, 2016 at 4:44 pm
                                  scots
                                  Participant

                                    Yes that was Dr. Salama trying to Get the insurance company to approve the MEK inhibitor because it is only approved for braf patients when the braf drugs no longer are working.They did not approve it for me so they are are going through the appeal process now, but that could take months.  She does have a clinical trial that they are trying to get me into. That could start next week.  I'm hoping that MSKCC in NY will have something to offer me.  That what make is so hard because there is not one repository for this information. If doctors would request it …. It's free..  Some offices will not do it. If I request it and ask for additional copies some place charge for my information . Thanks for the reply

                                    scot

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