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18 months on BRAF/MEK
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18 months on BRAF/MEK

› Forums › General Melanoma Community › 18 months on BRAF/MEK

  • Post
    • July 18, 2012 at 5:08 pm
    john partrick michael murphy
    Participant
      I know I am just a piker compared to many of you, but it is a grand feeling to make it this far. I still have one tumor in my lungs, but it has shrunk 92% in a year and a half. Also I am now a proud member of the 500 plus minutes in the MRI cigar tube for all the brain scans. No new mets have been found since I started treatment at MGH in Boston. If we keep our hope, we will keep our strength.

      I know I am just a piker compared to many of you, but it is a grand feeling to make it this far. I still have one tumor in my lungs, but it has shrunk 92% in a year and a half. Also I am now a proud member of the 500 plus minutes in the MRI cigar tube for all the brain scans. No new mets have been found since I started treatment at MGH in Boston. If we keep our hope, we will keep our strength.

    Viewing 23 reply threads
    • Replies
        • July 18, 2012 at 5:20 pm
        jag
        Participant

          Good Man John Patrick!

          May your tumors continue to shrink, 

          (I heard after 1000 minutes they throw in a free MRI!)

          keep up the good work!

          • July 18, 2012 at 5:20 pm
          jag
          Participant

            Good Man John Patrick!

            May your tumors continue to shrink, 

            (I heard after 1000 minutes they throw in a free MRI!)

            keep up the good work!

            • July 18, 2012 at 5:20 pm
            jag
            Participant

              Good Man John Patrick!

              May your tumors continue to shrink, 

              (I heard after 1000 minutes they throw in a free MRI!)

              keep up the good work!

              • July 18, 2012 at 5:45 pm
              Richard_K
              Participant

                 

                 John Patrick

                Good to hear your news.  I’ll have to ask about awards for my scans, I thought the only other benefit I got was for my wife to be able to use me as a night light.

                Dick

                • July 18, 2012 at 5:45 pm
                Richard_K
                Participant

                   

                   John Patrick

                  Good to hear your news.  I’ll have to ask about awards for my scans, I thought the only other benefit I got was for my wife to be able to use me as a night light.

                  Dick

                  • July 18, 2012 at 5:45 pm
                  Richard_K
                  Participant

                     

                     John Patrick

                    Good to hear your news.  I’ll have to ask about awards for my scans, I thought the only other benefit I got was for my wife to be able to use me as a night light.

                    Dick

                    • July 18, 2012 at 5:50 pm
                    aldakota22
                    Participant

                      Shooting for 100% reduction.You will make it.Great news.to read.In my prayers.Beat the Beast.   Al

                      • July 18, 2012 at 5:50 pm
                      aldakota22
                      Participant

                        Shooting for 100% reduction.You will make it.Great news.to read.In my prayers.Beat the Beast.   Al

                        • July 18, 2012 at 5:50 pm
                        aldakota22
                        Participant

                          Shooting for 100% reduction.You will make it.Great news.to read.In my prayers.Beat the Beast.   Al

                          • July 18, 2012 at 9:04 pm
                          Harry in Fair Oaks
                          Participant

                            Looks like we are in the same trial, just on different coasts.  I'm 14+ months along, also with great results (I posted a few days ago).  Have you had a PET done recently?  (I know it's not one of the trial requirements.)  I hope that just like in my case, your remaining tumor is not even active.

                            I know what you mean about the "cigar tube"!  Over the last 15 years I must have logged a few days in there!

                            Best wishes,

                            Harry

                            • July 18, 2012 at 9:04 pm
                            Harry in Fair Oaks
                            Participant

                              Looks like we are in the same trial, just on different coasts.  I'm 14+ months along, also with great results (I posted a few days ago).  Have you had a PET done recently?  (I know it's not one of the trial requirements.)  I hope that just like in my case, your remaining tumor is not even active.

                              I know what you mean about the "cigar tube"!  Over the last 15 years I must have logged a few days in there!

                              Best wishes,

                              Harry

                                • July 18, 2012 at 11:45 pm
                                john partrick michael murphy
                                Participant
                                  No Harry, I haven’t had a PET since November of 10. My doctor says the remaining tumor may be a eunuch as it sure isn’t sending out the mets. 15 years!!! As I said, I’m just a piker compared to you guys that have been fighting the beast for so long. I get the MRI and CT scans every other month. Should I ask about getting a new PET? What does it show that the others don’t?
                                  • July 18, 2012 at 11:45 pm
                                  john partrick michael murphy
                                  Participant
                                    No Harry, I haven’t had a PET since November of 10. My doctor says the remaining tumor may be a eunuch as it sure isn’t sending out the mets. 15 years!!! As I said, I’m just a piker compared to you guys that have been fighting the beast for so long. I get the MRI and CT scans every other month. Should I ask about getting a new PET? What does it show that the others don’t?
                                    • July 19, 2012 at 12:11 am
                                    Harry in Fair Oaks
                                    Participant

                                      A PET scan would show if the lung met still exhibits any hypermetabolic activity (i.e. whether it's a "eunuch" or not).  As an example, my met on the upper femur near the hip still shows on the CT, but it no longer shows any activity on the PET.  Another thing about the PET is that it includes all the extremities, as opposed to only the head and trunk that the study protocol specifies.

                                      Best wishes,

                                      Harry

                                      • July 19, 2012 at 12:11 am
                                      Harry in Fair Oaks
                                      Participant

                                        A PET scan would show if the lung met still exhibits any hypermetabolic activity (i.e. whether it's a "eunuch" or not).  As an example, my met on the upper femur near the hip still shows on the CT, but it no longer shows any activity on the PET.  Another thing about the PET is that it includes all the extremities, as opposed to only the head and trunk that the study protocol specifies.

                                        Best wishes,

                                        Harry

                                        • July 19, 2012 at 12:11 am
                                        Harry in Fair Oaks
                                        Participant

                                          A PET scan would show if the lung met still exhibits any hypermetabolic activity (i.e. whether it's a "eunuch" or not).  As an example, my met on the upper femur near the hip still shows on the CT, but it no longer shows any activity on the PET.  Another thing about the PET is that it includes all the extremities, as opposed to only the head and trunk that the study protocol specifies.

                                          Best wishes,

                                          Harry

                                          • July 18, 2012 at 11:45 pm
                                          john partrick michael murphy
                                          Participant
                                            No Harry, I haven’t had a PET since November of 10. My doctor says the remaining tumor may be a eunuch as it sure isn’t sending out the mets. 15 years!!! As I said, I’m just a piker compared to you guys that have been fighting the beast for so long. I get the MRI and CT scans every other month. Should I ask about getting a new PET? What does it show that the others don’t?
                                          • July 18, 2012 at 9:04 pm
                                          Harry in Fair Oaks
                                          Participant

                                            Looks like we are in the same trial, just on different coasts.  I'm 14+ months along, also with great results (I posted a few days ago).  Have you had a PET done recently?  (I know it's not one of the trial requirements.)  I hope that just like in my case, your remaining tumor is not even active.

                                            I know what you mean about the "cigar tube"!  Over the last 15 years I must have logged a few days in there!

                                            Best wishes,

                                            Harry

                                            • July 19, 2012 at 12:19 am
                                            AllyNTAus
                                            Participant

                                              Wow,  congratulations, it is so inspiring and heartening to hear of people obtaining long-term responses on these drugs, there are a few on here now, it offers such hope.

                                              May your great response continue for many months and years to come!

                                              I am having my first lot of scans since starting the GSK BRAF inhibitor tomorrow, so fingers crossed.

                                              • July 19, 2012 at 12:19 am
                                              AllyNTAus
                                              Participant

                                                Wow,  congratulations, it is so inspiring and heartening to hear of people obtaining long-term responses on these drugs, there are a few on here now, it offers such hope.

                                                May your great response continue for many months and years to come!

                                                I am having my first lot of scans since starting the GSK BRAF inhibitor tomorrow, so fingers crossed.

                                                • July 19, 2012 at 12:19 am
                                                AllyNTAus
                                                Participant

                                                  Wow,  congratulations, it is so inspiring and heartening to hear of people obtaining long-term responses on these drugs, there are a few on here now, it offers such hope.

                                                  May your great response continue for many months and years to come!

                                                  I am having my first lot of scans since starting the GSK BRAF inhibitor tomorrow, so fingers crossed.

                                                  • July 19, 2012 at 3:42 pm
                                                  Ali
                                                  Participant

                                                    That is great news!  Thanks for sharing!

                                                    • July 19, 2012 at 3:42 pm
                                                    Ali
                                                    Participant

                                                      That is great news!  Thanks for sharing!

                                                      • July 19, 2012 at 3:42 pm
                                                      Ali
                                                      Participant

                                                        That is great news!  Thanks for sharing!

                                                        • July 19, 2012 at 4:53 pm
                                                        Erinmay22
                                                        Participant

                                                          yay – go glad to hear that things are still going well!  

                                                          Erin

                                                          • July 19, 2012 at 4:53 pm
                                                          Erinmay22
                                                          Participant

                                                            yay – go glad to hear that things are still going well!  

                                                            Erin

                                                            • July 19, 2012 at 4:53 pm
                                                            Erinmay22
                                                            Participant

                                                              yay – go glad to hear that things are still going well!  

                                                              Erin

                                                              • July 20, 2012 at 2:24 am
                                                              audgator
                                                              Participant

                                                                You know, John Patrick Michael's tag line has always been my favorite:

                                                                The history of the world is the battle between superstition and intelligence.

                                                                But Harry's "Too ugly to die" is hard to beat. 

                                                                Dan

                                                                • July 20, 2012 at 2:24 am
                                                                audgator
                                                                Participant

                                                                  You know, John Patrick Michael's tag line has always been my favorite:

                                                                  The history of the world is the battle between superstition and intelligence.

                                                                  But Harry's "Too ugly to die" is hard to beat. 

                                                                  Dan

                                                                  • July 20, 2012 at 2:24 am
                                                                  audgator
                                                                  Participant

                                                                    You know, John Patrick Michael's tag line has always been my favorite:

                                                                    The history of the world is the battle between superstition and intelligence.

                                                                    But Harry's "Too ugly to die" is hard to beat. 

                                                                    Dan

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