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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 

        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
        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 

      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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