The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

TDM1 is working!!!!

Forums General Melanoma Community TDM1 is working!!!!

  • Post
    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
        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

          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

            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

              Bubbles
              Participant

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

                Bubbles
                Participant

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

                    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

                      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

                        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

                          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

                            Maureen038
                            Participant

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

                              Maureen

                               

                              Maureen038
                              Participant

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

                                Maureen

                                 

                                Maureen038
                                Participant

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

                                  Maureen

                                   

                                  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

                                    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

                                    Bubbles
                                    Participant

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

                                      Coneflowers
                                      Participant

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

                                         

                                        Thanks,

                                        Amanda

                                        Coneflowers
                                        Participant

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

                                           

                                          Thanks,

                                          Amanda

                                            Maureen038
                                            Participant

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

                                              Maureen

                                              Maureen038
                                              Participant

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

                                                Maureen

                                                Coneflowers
                                                Participant

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

                                                  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

                                                    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

                                                      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

                                                        Coneflowers
                                                        Participant

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

                                                          Coneflowers
                                                          Participant

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

                                                            Maureen038
                                                            Participant

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

                                                              Maureen

                                                            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
                                                          • You must be logged in to reply to this topic.
                                                          About the MRF Patient Forum

                                                          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.