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Loving everyday of NED!
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Loving everyday of NED!

› Forums › General Melanoma Community › Loving everyday of NED!

  • Post
    • April 26, 2014 at 4:00 am
    TSchulz
    Participant

      I wanted to drop in to share some positive news. It is one year since I was officially labeled NED by the team at NIH.  I recently had follow-up scans and things still look good. 

      It has been a busy and full year for my family and we feel so blessed to have this breathing room.   I remain so grateful to this community for all the help and support it provides. In my work, I get to meet many people diagnosed with melanoma and I always recommend this community to them as a way to help make sense of this crazy disease. 

      I wish you all the best of health in the coming year. 

      Troy

    Viewing 11 reply threads
    • Replies
        • April 26, 2014 at 1:21 pm
        tschmith
        Participant

          Congratulations, Troy!  What a great feeling NED must be.  I just completed a trial at NIH.  First I tried to qualify for the TIL but I had no tumors that were large enough or easy enough to remove.  They did a core biospy but my cells didn't grow.  I was so disappointed.  A couple of days later they contacted me to tell me about another trial called MAGE TCR.  In some ways it's like the TIL…they take your immune system down and then return genetically engineered cells to you with IL2.  I can't describe it accurately unless I have all the info right in front of me.  I've been home from the hosptial for about 2 1/2 weeks.  Still really dragging but I had an infection for a while and was on heavy duty antibiotics so that hasn't helped.  I go back for my first appointments on April 30/May1.  They said not to expect much results wise this early.  I'm only the third person to do this!   Hoping to someday be a success story like you! 

          Terrie

          • April 26, 2014 at 1:21 pm
          tschmith
          Participant

            Congratulations, Troy!  What a great feeling NED must be.  I just completed a trial at NIH.  First I tried to qualify for the TIL but I had no tumors that were large enough or easy enough to remove.  They did a core biospy but my cells didn't grow.  I was so disappointed.  A couple of days later they contacted me to tell me about another trial called MAGE TCR.  In some ways it's like the TIL…they take your immune system down and then return genetically engineered cells to you with IL2.  I can't describe it accurately unless I have all the info right in front of me.  I've been home from the hosptial for about 2 1/2 weeks.  Still really dragging but I had an infection for a while and was on heavy duty antibiotics so that hasn't helped.  I go back for my first appointments on April 30/May1.  They said not to expect much results wise this early.  I'm only the third person to do this!   Hoping to someday be a success story like you! 

            Terrie

              • May 1, 2014 at 6:39 am
              TSchulz
              Participant

                Terrie,

                All the best of luck in recovering and with your results. While I am thrilled with the results I have had – I have also felt so fortunate to have had the chance to participate in the clinical trial process when options were so slim for me. 

                Good luck tomorrow. I'll be thinking of you at 1 pm est. 

                Troy

                • May 1, 2014 at 6:39 am
                TSchulz
                Participant

                  Terrie,

                  All the best of luck in recovering and with your results. While I am thrilled with the results I have had – I have also felt so fortunate to have had the chance to participate in the clinical trial process when options were so slim for me. 

                  Good luck tomorrow. I'll be thinking of you at 1 pm est. 

                  Troy

                  • May 1, 2014 at 6:39 am
                  TSchulz
                  Participant

                    Terrie,

                    All the best of luck in recovering and with your results. While I am thrilled with the results I have had – I have also felt so fortunate to have had the chance to participate in the clinical trial process when options were so slim for me. 

                    Good luck tomorrow. I'll be thinking of you at 1 pm est. 

                    Troy

                  • April 26, 2014 at 1:21 pm
                  tschmith
                  Participant

                    Congratulations, Troy!  What a great feeling NED must be.  I just completed a trial at NIH.  First I tried to qualify for the TIL but I had no tumors that were large enough or easy enough to remove.  They did a core biospy but my cells didn't grow.  I was so disappointed.  A couple of days later they contacted me to tell me about another trial called MAGE TCR.  In some ways it's like the TIL…they take your immune system down and then return genetically engineered cells to you with IL2.  I can't describe it accurately unless I have all the info right in front of me.  I've been home from the hosptial for about 2 1/2 weeks.  Still really dragging but I had an infection for a while and was on heavy duty antibiotics so that hasn't helped.  I go back for my first appointments on April 30/May1.  They said not to expect much results wise this early.  I'm only the third person to do this!   Hoping to someday be a success story like you! 

                    Terrie

                    • April 26, 2014 at 8:20 pm
                    joy_
                    Participant

                      So happy for you!  Thank you for sharing the good news!  Always great to hear!  I am hoping my hubs will be able to go on to TiL trial… Currently waiting to see if lab can grow TILs from his tumors.

                        • April 27, 2014 at 1:20 am
                        Brendan
                        Participant

                          Great news, Troy.  Thanks for sharing; good news helps us all.

                          Wishing you continued good luck.

                          Brendan

                           

                          • April 27, 2014 at 1:20 am
                          Brendan
                          Participant

                            Great news, Troy.  Thanks for sharing; good news helps us all.

                            Wishing you continued good luck.

                            Brendan

                             

                            • April 27, 2014 at 1:20 am
                            Brendan
                            Participant

                              Great news, Troy.  Thanks for sharing; good news helps us all.

                              Wishing you continued good luck.

                              Brendan

                               

                              • May 1, 2014 at 6:42 am
                              TSchulz
                              Participant

                                I hope those cells are growing like crazy. 

                                Best of luck and if there is any way I can help as you move through the process feel free to email me. [email protected]

                                Troy

                                • May 1, 2014 at 6:42 am
                                TSchulz
                                Participant

                                  I hope those cells are growing like crazy. 

                                  Best of luck and if there is any way I can help as you move through the process feel free to email me. [email protected]

                                  Troy

                                  • May 1, 2014 at 6:42 am
                                  TSchulz
                                  Participant

                                    I hope those cells are growing like crazy. 

                                    Best of luck and if there is any way I can help as you move through the process feel free to email me. [email protected]

                                    Troy

                                  • April 26, 2014 at 8:20 pm
                                  joy_
                                  Participant

                                    So happy for you!  Thank you for sharing the good news!  Always great to hear!  I am hoping my hubs will be able to go on to TiL trial… Currently waiting to see if lab can grow TILs from his tumors.

                                    • April 26, 2014 at 8:20 pm
                                    joy_
                                    Participant

                                      So happy for you!  Thank you for sharing the good news!  Always great to hear!  I am hoping my hubs will be able to go on to TiL trial… Currently waiting to see if lab can grow TILs from his tumors.

                                      • April 28, 2014 at 3:44 pm
                                      jbronicki
                                      Participant

                                        Congratulations!  That must be such a relief.  Wishing you all the best and many NED years!

                                         

                                        • April 28, 2014 at 3:44 pm
                                        jbronicki
                                        Participant

                                          Congratulations!  That must be such a relief.  Wishing you all the best and many NED years!

                                           

                                          • April 28, 2014 at 3:44 pm
                                          jbronicki
                                          Participant

                                            Congratulations!  That must be such a relief.  Wishing you all the best and many NED years!

                                             

                                            • April 28, 2014 at 5:43 pm
                                            Swanee
                                            Participant

                                              Congratulations to you Troy!  It is so wonderful to see a recent post and hear this continued good news.  I think of you often and wonder how you are doing, praying that your TIL treatment continues to be a success!   Your story is a special one for me, perhaps because of the personal connection we made but also the determination I saw in you,  to be here for your family and I know how hard you fought to make it happen!

                                              Thanks for updating your profile, when I don't see posts in a long time, I always check profiles to look for updates.   I see you've added child (ren), congratulations to you and your sweet wife!  Wishing you continued blessings of good health to you and yours!

                                              Linda

                                              • April 28, 2014 at 5:43 pm
                                              Swanee
                                              Participant

                                                Congratulations to you Troy!  It is so wonderful to see a recent post and hear this continued good news.  I think of you often and wonder how you are doing, praying that your TIL treatment continues to be a success!   Your story is a special one for me, perhaps because of the personal connection we made but also the determination I saw in you,  to be here for your family and I know how hard you fought to make it happen!

                                                Thanks for updating your profile, when I don't see posts in a long time, I always check profiles to look for updates.   I see you've added child (ren), congratulations to you and your sweet wife!  Wishing you continued blessings of good health to you and yours!

                                                Linda

                                                • April 28, 2014 at 5:43 pm
                                                Swanee
                                                Participant

                                                  Congratulations to you Troy!  It is so wonderful to see a recent post and hear this continued good news.  I think of you often and wonder how you are doing, praying that your TIL treatment continues to be a success!   Your story is a special one for me, perhaps because of the personal connection we made but also the determination I saw in you,  to be here for your family and I know how hard you fought to make it happen!

                                                  Thanks for updating your profile, when I don't see posts in a long time, I always check profiles to look for updates.   I see you've added child (ren), congratulations to you and your sweet wife!  Wishing you continued blessings of good health to you and yours!

                                                  Linda

                                                    • May 1, 2014 at 6:53 am
                                                    TSchulz
                                                    Participant

                                                      Linda, thanks for the reply/message – you are so wonderful with your words. I hope all is well with you and that melanoma is leaving you alone and in peace! 

                                                      Take care and enjoy our great weather. 

                                                      Troy

                                                      • May 1, 2014 at 6:53 am
                                                      TSchulz
                                                      Participant

                                                        Linda, thanks for the reply/message – you are so wonderful with your words. I hope all is well with you and that melanoma is leaving you alone and in peace! 

                                                        Take care and enjoy our great weather. 

                                                        Troy

                                                        • May 1, 2014 at 6:53 am
                                                        TSchulz
                                                        Participant

                                                          Linda, thanks for the reply/message – you are so wonderful with your words. I hope all is well with you and that melanoma is leaving you alone and in peace! 

                                                          Take care and enjoy our great weather. 

                                                          Troy

                                                    Viewing 11 reply threads
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