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Almost there…..

Forums General Melanoma Community Almost there…..

  • Post
    TSchulz
    Participant

      Hi everyone, 

      It has been awhile since I've updated my status here but I figured I should share my continued good results from my NIH TIL treatment.  

      Just to recap – I completed the randomized TIL trial at NIH in late May of 2012.  I randomized to the non-radiation arm of the study.  I had my 4th follow-up visit last week and all of my tumors have shown remarkable response thus far.  

      Hi everyone, 

      It has been awhile since I've updated my status here but I figured I should share my continued good results from my NIH TIL treatment.  

      Just to recap – I completed the randomized TIL trial at NIH in late May of 2012.  I randomized to the non-radiation arm of the study.  I had my 4th follow-up visit last week and all of my tumors have shown remarkable response thus far.  

      The scans showed that over 90% of the total tumor volume is gone. All that remains is a smudge of the big tumor in my right lung (maybe just scar) and a spot in my femur that hasn't really changed much in over 1.5yrs of watching it. Two more of the tumors they've been following are no longer seen. Bye-Bye suckers…. 

      The other good news is (the physicians have never said this to me before)… They said that they've found if they can get all of the cancer to go away with this treatment – it usually stays away! Of course, no guarantees but I'll take any reassuring words. 

      I go back in another 2 months for studies and scans and am looking forward to spreading these trips out even farther. 

       
      My family has so much to celebrate this year. When I was first diagnosed as Stage 4 my wife was 7 months pregnant and my little girl turns 3 next week. I am lucky! 
       
       
      Happy holidays to you all and may 2013 be one filled with positive results for this community. 
      Troy
    Viewing 14 reply threads
    • Replies
        Snickers60
        Participant

          Way to go !   Good for you – and so glad for the GOOD NEWS !    KEEP ON KEEPING ON………

          Snickers60
          Participant

            Way to go !   Good for you – and so glad for the GOOD NEWS !    KEEP ON KEEPING ON………

            Snickers60
            Participant

              Way to go !   Good for you – and so glad for the GOOD NEWS !    KEEP ON KEEPING ON………

              triciad
              Participant

                God bless you and grant you continued good health.  Thanks for sharing this wonderful news!

                triciad
                Participant

                  God bless you and grant you continued good health.  Thanks for sharing this wonderful news!

                  triciad
                  Participant

                    God bless you and grant you continued good health.  Thanks for sharing this wonderful news!

                    DeniseK
                    Participant

                      Hi Troy,

                      Well first of all HAPPY BIRTHDAY to the little one!  Secondly CONGRATS on such an awesome response. 

                      I don't know too much about Til treatment but I've heard of it.  Do they use this on people with numerous tumors?  Is this FDA approved treatment?  I will have to do some research.  Always interested in anything that is working for others.

                      Denise

                        Phil S
                        Participant
                          That’s such GREAT news, love to hear it! My husband also did TIL in Hpuston in May. He is currently stable, scanned again in January. Your story gives us such hope! Enjoy your holidays with you family! All the best, Valerie (Phil’s wife)
                          Phil S
                          Participant
                            That’s such GREAT news, love to hear it! My husband also did TIL in Hpuston in May. He is currently stable, scanned again in January. Your story gives us such hope! Enjoy your holidays with you family! All the best, Valerie (Phil’s wife)
                            Phil S
                            Participant
                              That’s such GREAT news, love to hear it! My husband also did TIL in Hpuston in May. He is currently stable, scanned again in January. Your story gives us such hope! Enjoy your holidays with you family! All the best, Valerie (Phil’s wife)
                              TSchulz
                              Participant

                                Denise, 

                                Thanks for the reply. I'll give you a short version of TIL treatment or Adoptive Cell Therapy – please ask your MD if it is something they might consider for you.  

                                I believe TIL treatments are still only classified as trials and done only at NIH and MD Anderson right now in the US (as well as some international sites starting up programs UK, Netherlands, Israel that I've heard of).  Moffitt used to do it but I recall reading that they had to stop due to funding issues.  

                                Basically, it is a challenging treatment regimen where they harvest tumors from you then isolate "tumor infiltrating lymphocytes" (TIL cells) from the tumor directly.  They can multiply those cells in the lab to the 10-100 billions and then give the cells back to you after essentially killing off your current immune system.  The idea is to "retrain" and "recharge" your immune system to recognize and kill the melanoma cells.  The goal is long term, durable responses.  You'll see response rates reported ranging from 20-70% based on the type of lymphodepletion used. 

                                That is a short version – there are many articles out there that better describe it.  NIH is doing several variations on this process in an attempt to better understand why some people respond completely while others may not.  They are also doing one trial combining cell therapy with vemurafenib.  

                                All the best to you – Troy 

                                TSchulz
                                Participant

                                  Denise, 

                                  Thanks for the reply. I'll give you a short version of TIL treatment or Adoptive Cell Therapy – please ask your MD if it is something they might consider for you.  

                                  I believe TIL treatments are still only classified as trials and done only at NIH and MD Anderson right now in the US (as well as some international sites starting up programs UK, Netherlands, Israel that I've heard of).  Moffitt used to do it but I recall reading that they had to stop due to funding issues.  

                                  Basically, it is a challenging treatment regimen where they harvest tumors from you then isolate "tumor infiltrating lymphocytes" (TIL cells) from the tumor directly.  They can multiply those cells in the lab to the 10-100 billions and then give the cells back to you after essentially killing off your current immune system.  The idea is to "retrain" and "recharge" your immune system to recognize and kill the melanoma cells.  The goal is long term, durable responses.  You'll see response rates reported ranging from 20-70% based on the type of lymphodepletion used. 

                                  That is a short version – there are many articles out there that better describe it.  NIH is doing several variations on this process in an attempt to better understand why some people respond completely while others may not.  They are also doing one trial combining cell therapy with vemurafenib.  

                                  All the best to you – Troy 

                                  TSchulz
                                  Participant

                                    Denise, 

                                    Thanks for the reply. I'll give you a short version of TIL treatment or Adoptive Cell Therapy – please ask your MD if it is something they might consider for you.  

                                    I believe TIL treatments are still only classified as trials and done only at NIH and MD Anderson right now in the US (as well as some international sites starting up programs UK, Netherlands, Israel that I've heard of).  Moffitt used to do it but I recall reading that they had to stop due to funding issues.  

                                    Basically, it is a challenging treatment regimen where they harvest tumors from you then isolate "tumor infiltrating lymphocytes" (TIL cells) from the tumor directly.  They can multiply those cells in the lab to the 10-100 billions and then give the cells back to you after essentially killing off your current immune system.  The idea is to "retrain" and "recharge" your immune system to recognize and kill the melanoma cells.  The goal is long term, durable responses.  You'll see response rates reported ranging from 20-70% based on the type of lymphodepletion used. 

                                    That is a short version – there are many articles out there that better describe it.  NIH is doing several variations on this process in an attempt to better understand why some people respond completely while others may not.  They are also doing one trial combining cell therapy with vemurafenib.  

                                    All the best to you – Troy 

                                    NYKaren
                                    Participant
                                      Great news, Troy.
                                      I hope you have continued success.
                                      Enjoy your little girl. Honestly, just yesterday mine were 3 and 5, now they’re 23 and 25!
                                      Best wishes,
                                      karen
                                      NYKaren
                                      Participant
                                        Great news, Troy.
                                        I hope you have continued success.
                                        Enjoy your little girl. Honestly, just yesterday mine were 3 and 5, now they’re 23 and 25!
                                        Best wishes,
                                        karen
                                        NYKaren
                                        Participant
                                          Great news, Troy.
                                          I hope you have continued success.
                                          Enjoy your little girl. Honestly, just yesterday mine were 3 and 5, now they’re 23 and 25!
                                          Best wishes,
                                          karen
                                        DeniseK
                                        Participant

                                          Hi Troy,

                                          Well first of all HAPPY BIRTHDAY to the little one!  Secondly CONGRATS on such an awesome response. 

                                          I don't know too much about Til treatment but I've heard of it.  Do they use this on people with numerous tumors?  Is this FDA approved treatment?  I will have to do some research.  Always interested in anything that is working for others.

                                          Denise

                                          DeniseK
                                          Participant

                                            Hi Troy,

                                            Well first of all HAPPY BIRTHDAY to the little one!  Secondly CONGRATS on such an awesome response. 

                                            I don't know too much about Til treatment but I've heard of it.  Do they use this on people with numerous tumors?  Is this FDA approved treatment?  I will have to do some research.  Always interested in anything that is working for others.

                                            Denise

                                            Angela C
                                            Participant

                                              Hey Troy. Congrats on the awesome news!! I'm so happy that the TIL treatment is working for you! They are great at NIH. We miss them!

                                              ~Angela

                                              Angela C
                                              Participant

                                                Hey Troy. Congrats on the awesome news!! I'm so happy that the TIL treatment is working for you! They are great at NIH. We miss them!

                                                ~Angela

                                                Angela C
                                                Participant

                                                  Hey Troy. Congrats on the awesome news!! I'm so happy that the TIL treatment is working for you! They are great at NIH. We miss them!

                                                  ~Angela

                                                  Ali
                                                  Participant

                                                    Awesome Troy!!!  I have been wondering how you have been doing.  Love this kind of news! 

                                                    Ali
                                                    Participant

                                                      Awesome Troy!!!  I have been wondering how you have been doing.  Love this kind of news! 

                                                      Ali
                                                      Participant

                                                        Awesome Troy!!!  I have been wondering how you have been doing.  Love this kind of news! 

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