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340 days after TIL
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340 days after TIL

› Forums › General Melanoma Community › 340 days after TIL

  • Post
    • May 7, 2013 at 5:34 am
    TSchulz
    Participant

      Hello All, 

      I wanted to share my latest good news from my follow-up visit to NIH last week.  340 days after they infused my 119 billion TIL cells back into my body -my doctors gave me the label of " Complete responder with no evidence of disease".  This is a label I hope to wear for a very long time. 

      Hello All, 

      I wanted to share my latest good news from my follow-up visit to NIH last week.  340 days after they infused my 119 billion TIL cells back into my body -my doctors gave me the label of " Complete responder with no evidence of disease".  This is a label I hope to wear for a very long time. 

      It has been a great year watching the tumors shrink away.  But even with each bit of good news comes the fear that it will, at some point, turn the other direction without warning.  Hearing the phrase above has allowed us to breath a little deeper and feel a little more confident that melanoma may remain behind us for a little while.  (How about gone but not forgotten?)

      I don't post here all that often but when I have I have received so much support and inspiration.  I am constantly amazed and inspired by everyone who chooses to share their stories or their advice.  I  have never participated in a community like this before but have found so much peace in knowing that there are others who really know what this about – and they have my back.  Thanks for that.  

      I hope everyone who reads this gets to hear the words of "no evidence of disease" and those words linger for year after year.  

      All the best, 

      Troy

    Viewing 29 reply threads
    • Replies
        • May 7, 2013 at 11:28 am
        Tina D
        Participant

          Wonderful, wonderful news!! Thank you for taking the time to come and post these words of encouragement and congratulations on your great response to the TIL.

          Tina

          • May 7, 2013 at 11:28 am
          Tina D
          Participant

            Wonderful, wonderful news!! Thank you for taking the time to come and post these words of encouragement and congratulations on your great response to the TIL.

            Tina

            • May 7, 2013 at 11:28 am
            Tina D
            Participant

              Wonderful, wonderful news!! Thank you for taking the time to come and post these words of encouragement and congratulations on your great response to the TIL.

              Tina

              • May 7, 2013 at 11:39 am
              Fen
              Participant

                What wonderful news!  Enjoy yourself and your successful treatment.   I really like your "gone but not forgotten" attitude.  For me this has translated into raising awareness and money for research.  I feel that in a very small way I'm helping others beat this awful disease.

                Fen

                • May 7, 2013 at 11:39 am
                Fen
                Participant

                  What wonderful news!  Enjoy yourself and your successful treatment.   I really like your "gone but not forgotten" attitude.  For me this has translated into raising awareness and money for research.  I feel that in a very small way I'm helping others beat this awful disease.

                  Fen

                  • May 7, 2013 at 11:39 am
                  Fen
                  Participant

                    What wonderful news!  Enjoy yourself and your successful treatment.   I really like your "gone but not forgotten" attitude.  For me this has translated into raising awareness and money for research.  I feel that in a very small way I'm helping others beat this awful disease.

                    Fen

                    • May 7, 2013 at 12:02 pm
                    Gene_S
                    Participant

                      Troy,

                      Welcome to the new world of NED I hope it last for a long while.  This is such a great thing to hear.  Congratulations and now maybe you can live life to its fullest.  Each day is a blessing that deserves counting.

                      Judy (loving wife of Gene Stage IV and now NED)

                      • May 7, 2013 at 12:02 pm
                      Gene_S
                      Participant

                        Troy,

                        Welcome to the new world of NED I hope it last for a long while.  This is such a great thing to hear.  Congratulations and now maybe you can live life to its fullest.  Each day is a blessing that deserves counting.

                        Judy (loving wife of Gene Stage IV and now NED)

                        • May 7, 2013 at 12:02 pm
                        Gene_S
                        Participant

                          Troy,

                          Welcome to the new world of NED I hope it last for a long while.  This is such a great thing to hear.  Congratulations and now maybe you can live life to its fullest.  Each day is a blessing that deserves counting.

                          Judy (loving wife of Gene Stage IV and now NED)

                          • May 7, 2013 at 12:04 pm
                          Brendan
                          Participant

                            Great news, Troy!  Thanks for sharing.

                            Brendan

                            • May 7, 2013 at 12:04 pm
                            Brendan
                            Participant

                              Great news, Troy!  Thanks for sharing.

                              Brendan

                              • May 7, 2013 at 12:04 pm
                              Brendan
                              Participant

                                Great news, Troy!  Thanks for sharing.

                                Brendan

                                • May 7, 2013 at 12:19 pm
                                buffcody
                                Participant

                                  I am very happy and heartened by your wondrous report.  To many years of health!!

                                  • May 7, 2013 at 12:19 pm
                                  buffcody
                                  Participant

                                    I am very happy and heartened by your wondrous report.  To many years of health!!

                                    • May 7, 2013 at 12:19 pm
                                    buffcody
                                    Participant

                                      I am very happy and heartened by your wondrous report.  To many years of health!!

                                      • May 7, 2013 at 12:38 pm
                                      Phil S
                                      Participant
                                        Troy, That is fantastic news, I am so happy for you and your family. My husband did TIL at MDAnderson, so I remembered your posts and always wonder how you were doing, NED WOW! How often will you need to go to NIH for scans now? My husband has been stable almost one year since his TIL, and he is feeling well. ENJOY your NED life and I hope your melanoma is gone forever! God bless, Valerie (Phil’s wife)
                                        • May 7, 2013 at 12:38 pm
                                        Phil S
                                        Participant
                                          Troy, That is fantastic news, I am so happy for you and your family. My husband did TIL at MDAnderson, so I remembered your posts and always wonder how you were doing, NED WOW! How often will you need to go to NIH for scans now? My husband has been stable almost one year since his TIL, and he is feeling well. ENJOY your NED life and I hope your melanoma is gone forever! God bless, Valerie (Phil’s wife)
                                          • May 7, 2013 at 12:38 pm
                                          Phil S
                                          Participant
                                            Troy, That is fantastic news, I am so happy for you and your family. My husband did TIL at MDAnderson, so I remembered your posts and always wonder how you were doing, NED WOW! How often will you need to go to NIH for scans now? My husband has been stable almost one year since his TIL, and he is feeling well. ENJOY your NED life and I hope your melanoma is gone forever! God bless, Valerie (Phil’s wife)
                                              • May 7, 2013 at 4:31 pm
                                              TSchulz
                                              Participant

                                                Valerie, 

                                                Thank you for your reply.  They will keep a pretty close eye on me for quite awhile.  I will return every 3 months for 1-2 more times and assuming things stay clear they will slowly start to stretch it out. As much as l like spending time in DC, I look forward to only having to make the trip once/year someday.  I think they will follow me as long as I'm around….

                                                I am happy to hear that Phil has remained stable for the year.  I am sure you can relate – It is so great, although strange, to not have any treatment looming on the immediate horizon.  I wish you both all the best of luck with continued success and shrinkage!

                                                Troy

                                                • May 7, 2013 at 4:31 pm
                                                TSchulz
                                                Participant

                                                  Valerie, 

                                                  Thank you for your reply.  They will keep a pretty close eye on me for quite awhile.  I will return every 3 months for 1-2 more times and assuming things stay clear they will slowly start to stretch it out. As much as l like spending time in DC, I look forward to only having to make the trip once/year someday.  I think they will follow me as long as I'm around….

                                                  I am happy to hear that Phil has remained stable for the year.  I am sure you can relate – It is so great, although strange, to not have any treatment looming on the immediate horizon.  I wish you both all the best of luck with continued success and shrinkage!

                                                  Troy

                                                  • May 7, 2013 at 4:31 pm
                                                  TSchulz
                                                  Participant

                                                    Valerie, 

                                                    Thank you for your reply.  They will keep a pretty close eye on me for quite awhile.  I will return every 3 months for 1-2 more times and assuming things stay clear they will slowly start to stretch it out. As much as l like spending time in DC, I look forward to only having to make the trip once/year someday.  I think they will follow me as long as I'm around….

                                                    I am happy to hear that Phil has remained stable for the year.  I am sure you can relate – It is so great, although strange, to not have any treatment looming on the immediate horizon.  I wish you both all the best of luck with continued success and shrinkage!

                                                    Troy

                                                  • May 7, 2013 at 12:58 pm
                                                  hbecker
                                                  Participant

                                                    Troy, Judy/Gene, Valerie/Phil —

                                                    Thanks so much for sharing your success stories! N.E.D. – Gone but not forgotten – so much hope to share with those of us who are earlier on in this battle.

                                                    Thanks for paving the way – enjoy every day!!

                                                    Hazel (wife of Robert, awaiting word on last week's scans)

                                                    • May 7, 2013 at 12:58 pm
                                                    hbecker
                                                    Participant

                                                      Troy, Judy/Gene, Valerie/Phil —

                                                      Thanks so much for sharing your success stories! N.E.D. – Gone but not forgotten – so much hope to share with those of us who are earlier on in this battle.

                                                      Thanks for paving the way – enjoy every day!!

                                                      Hazel (wife of Robert, awaiting word on last week's scans)

                                                      • May 7, 2013 at 12:58 pm
                                                      hbecker
                                                      Participant

                                                        Troy, Judy/Gene, Valerie/Phil —

                                                        Thanks so much for sharing your success stories! N.E.D. – Gone but not forgotten – so much hope to share with those of us who are earlier on in this battle.

                                                        Thanks for paving the way – enjoy every day!!

                                                        Hazel (wife of Robert, awaiting word on last week's scans)

                                                        • May 7, 2013 at 4:12 pm
                                                        Linny
                                                        Participant

                                                          Troy, this is great news! Congratulations!!! I hope that you and your loved ones are celebrating this, BIG time.

                                                          • May 7, 2013 at 4:12 pm
                                                          Linny
                                                          Participant

                                                            Troy, this is great news! Congratulations!!! I hope that you and your loved ones are celebrating this, BIG time.

                                                            • May 7, 2013 at 4:12 pm
                                                            Linny
                                                            Participant

                                                              Troy, this is great news! Congratulations!!! I hope that you and your loved ones are celebrating this, BIG time.

                                                              • May 8, 2013 at 5:31 am
                                                              JerryfromFauq
                                                              Participant
                                                                WHOOPEE !!! Love such news!
                                                                • May 8, 2013 at 5:31 am
                                                                JerryfromFauq
                                                                Participant
                                                                  WHOOPEE !!! Love such news!
                                                                  • May 8, 2013 at 5:31 am
                                                                  JerryfromFauq
                                                                  Participant
                                                                    WHOOPEE !!! Love such news!
                                                                    • July 16, 2013 at 3:54 pm
                                                                    lizzie10
                                                                    Participant

                                                                      Great news Troy!

                                                                      I received the therapy in October 2006, only 8.5 billion cells. My NED status didn't arrive until December 2010, but I was stable from 2007-2010. I lead a normal life and so will you….Congratulations!!  Lizzie

                                                                      • July 16, 2013 at 3:54 pm
                                                                      lizzie10
                                                                      Participant

                                                                        Great news Troy!

                                                                        I received the therapy in October 2006, only 8.5 billion cells. My NED status didn't arrive until December 2010, but I was stable from 2007-2010. I lead a normal life and so will you….Congratulations!!  Lizzie

                                                                        • July 16, 2013 at 3:54 pm
                                                                        lizzie10
                                                                        Participant

                                                                          Great news Troy!

                                                                          I received the therapy in October 2006, only 8.5 billion cells. My NED status didn't arrive until December 2010, but I was stable from 2007-2010. I lead a normal life and so will you….Congratulations!!  Lizzie

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