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TDM1 is working!!!!
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TDM1 is working!!!!

› Forums › General Melanoma Community › TDM1 is working!!!!

  • Post
    • April 11, 2016 at 11:56 pm
    Maureen038
    Participant

      My husband had his second scan with TDM1(Sloan Kettering found he had an over abundance of the her-2 mutation).  We are so thrilled!!! He has only two very tiny lung nodules left. Hopefully, the drug will continue to work. My reason to write is to encourage everyone to keep fighting and to look everywhere for alternatives. He has done HD interferon, TIL at NIH, Ipi /Nivo in Pittsburg and DTIC in md. We are not giving up!!! We wish everyone the best!!!

      Maureen

    Viewing 8 reply threads
    • Replies
        • April 12, 2016 at 12:50 am
        BrianP
        Participant

          Wow!  Outstanding news Maureen.  So happy for you guys.  I love MSK's approach to tailor the treatment to the genetic makeup.  You guys are amazing in your resolve.

          Brian

          • April 12, 2016 at 12:50 am
          BrianP
          Participant

            Wow!  Outstanding news Maureen.  So happy for you guys.  I love MSK's approach to tailor the treatment to the genetic makeup.  You guys are amazing in your resolve.

            Brian

            • April 12, 2016 at 12:50 am
            BrianP
            Participant

              Wow!  Outstanding news Maureen.  So happy for you guys.  I love MSK's approach to tailor the treatment to the genetic makeup.  You guys are amazing in your resolve.

              Brian

              • April 12, 2016 at 1:57 am
              Bubbles
              Participant

                Oh, Maureen.  I am so happy for you.  love, c

                • April 12, 2016 at 1:57 am
                Bubbles
                Participant

                  Oh, Maureen.  I am so happy for you.  love, c

                    • April 12, 2016 at 10:57 am
                    Maureen038
                    Participant

                      Thank you so much Brian and Celeste for your support!!! Both of you are an integral part of this board by giving very informative advice and encouragement. 

                      By the way, I've mentioned this before, but it's important to mention again. Out of all of my husband's treatments,we feel very strongly that HD interferon was a complete waste of time. Quality of life is very important and if it worked that would be fine, but in our opinion it doesn't. My husband has a PhD in biochemistry and is very informed on the data from immunotherapy scholarly articles. He feels that all his other treatments worked well together even when he wasn't considered a responder at NIH, when he was kicked out of the trial in Pittsburg because he chose to have VATS surgery on a 4 cm nodule even though everything else was shrinking or gone or stable and lastly when he had dangerously low blood levels on DTIC and yet had great scan results. We feel that eventually more tIme will be given to patients to respond to immunotherapy treatments. We will continue to battle this dreadful disease and hopefully one day he will become NED.

                      Wishing all of you the best!!!

                      Maureen

                      • April 12, 2016 at 10:57 am
                      Maureen038
                      Participant

                        Thank you so much Brian and Celeste for your support!!! Both of you are an integral part of this board by giving very informative advice and encouragement. 

                        By the way, I've mentioned this before, but it's important to mention again. Out of all of my husband's treatments,we feel very strongly that HD interferon was a complete waste of time. Quality of life is very important and if it worked that would be fine, but in our opinion it doesn't. My husband has a PhD in biochemistry and is very informed on the data from immunotherapy scholarly articles. He feels that all his other treatments worked well together even when he wasn't considered a responder at NIH, when he was kicked out of the trial in Pittsburg because he chose to have VATS surgery on a 4 cm nodule even though everything else was shrinking or gone or stable and lastly when he had dangerously low blood levels on DTIC and yet had great scan results. We feel that eventually more tIme will be given to patients to respond to immunotherapy treatments. We will continue to battle this dreadful disease and hopefully one day he will become NED.

                        Wishing all of you the best!!!

                        Maureen

                        • April 12, 2016 at 10:57 am
                        Maureen038
                        Participant

                          Thank you so much Brian and Celeste for your support!!! Both of you are an integral part of this board by giving very informative advice and encouragement. 

                          By the way, I've mentioned this before, but it's important to mention again. Out of all of my husband's treatments,we feel very strongly that HD interferon was a complete waste of time. Quality of life is very important and if it worked that would be fine, but in our opinion it doesn't. My husband has a PhD in biochemistry and is very informed on the data from immunotherapy scholarly articles. He feels that all his other treatments worked well together even when he wasn't considered a responder at NIH, when he was kicked out of the trial in Pittsburg because he chose to have VATS surgery on a 4 cm nodule even though everything else was shrinking or gone or stable and lastly when he had dangerously low blood levels on DTIC and yet had great scan results. We feel that eventually more tIme will be given to patients to respond to immunotherapy treatments. We will continue to battle this dreadful disease and hopefully one day he will become NED.

                          Wishing all of you the best!!!

                          Maureen

                          • April 12, 2016 at 1:33 pm
                          dentholla
                          Participant

                            Best news – I am amazed/thrilled/excited to see almost weekly changes in how Melanoma can be treated.  Way to be an advocate for this fight and thanks for sharing your results!!

                            Kristi

                            • April 12, 2016 at 5:54 pm
                            Maureen038
                            Participant

                              Thanks so much Kristi!! I hope your husband never needs to worry about these treatments.

                              Maureen

                               

                              • April 12, 2016 at 5:54 pm
                              Maureen038
                              Participant

                                Thanks so much Kristi!! I hope your husband never needs to worry about these treatments.

                                Maureen

                                 

                                • April 12, 2016 at 5:54 pm
                                Maureen038
                                Participant

                                  Thanks so much Kristi!! I hope your husband never needs to worry about these treatments.

                                  Maureen

                                   

                                  • April 12, 2016 at 1:33 pm
                                  dentholla
                                  Participant

                                    Best news – I am amazed/thrilled/excited to see almost weekly changes in how Melanoma can be treated.  Way to be an advocate for this fight and thanks for sharing your results!!

                                    Kristi

                                    • April 12, 2016 at 1:33 pm
                                    dentholla
                                    Participant

                                      Best news – I am amazed/thrilled/excited to see almost weekly changes in how Melanoma can be treated.  Way to be an advocate for this fight and thanks for sharing your results!!

                                      Kristi

                                    • April 12, 2016 at 1:57 am
                                    Bubbles
                                    Participant

                                      Oh, Maureen.  I am so happy for you.  love, c

                                      • April 14, 2016 at 9:18 pm
                                      Coneflowers
                                      Participant

                                        That is wonderful news! ! Never give up! Can I ask if they did whole genome sequencing to find it? 

                                         

                                        Thanks,

                                        Amanda

                                        • April 14, 2016 at 9:18 pm
                                        Coneflowers
                                        Participant

                                          That is wonderful news! ! Never give up! Can I ask if they did whole genome sequencing to find it? 

                                           

                                          Thanks,

                                          Amanda

                                            • April 15, 2016 at 9:18 pm
                                            Maureen038
                                            Participant

                                              No Amanda they did not. MSK screened for the top cancer mutations.

                                              Maureen

                                              • April 15, 2016 at 9:18 pm
                                              Maureen038
                                              Participant

                                                No Amanda they did not. MSK screened for the top cancer mutations.

                                                Maureen

                                                • April 17, 2016 at 1:23 am
                                                Coneflowers
                                                Participant

                                                  Thank you so much for your reply! I am looking into genome sequencing for my daughter.

                                                  • April 17, 2016 at 10:33 am
                                                  Maureen038
                                                  Participant

                                                    No problem at all !!! I just read your history. How is your daughter doing? My prayers go out to you and your family. I truly hope you get great information on the genomic sequencing.

                                                    maureen

                                                    • April 17, 2016 at 10:33 am
                                                    Maureen038
                                                    Participant

                                                      No problem at all !!! I just read your history. How is your daughter doing? My prayers go out to you and your family. I truly hope you get great information on the genomic sequencing.

                                                      maureen

                                                      • April 17, 2016 at 10:33 am
                                                      Maureen038
                                                      Participant

                                                        No problem at all !!! I just read your history. How is your daughter doing? My prayers go out to you and your family. I truly hope you get great information on the genomic sequencing.

                                                        maureen

                                                        • April 17, 2016 at 1:23 am
                                                        Coneflowers
                                                        Participant

                                                          Thank you so much for your reply! I am looking into genome sequencing for my daughter.

                                                          • April 17, 2016 at 1:23 am
                                                          Coneflowers
                                                          Participant

                                                            Thank you so much for your reply! I am looking into genome sequencing for my daughter.

                                                            • April 15, 2016 at 9:18 pm
                                                            Maureen038
                                                            Participant

                                                              No Amanda they did not. MSK screened for the top cancer mutations.

                                                              Maureen

                                                            • April 14, 2016 at 9:18 pm
                                                            Coneflowers
                                                            Participant

                                                              That is wonderful news! ! Never give up! Can I ask if they did whole genome sequencing to find it? 

                                                               

                                                              Thanks,

                                                              Amanda

                                                          Viewing 8 reply threads
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