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TIL THERAPY OR ACT THERAPY QUESTION:

Forums General Melanoma Community TIL THERAPY OR ACT THERAPY QUESTION:

  • Post
    jag
    Participant

    I have just been diagnosed as a stage IV melanoma patient, and have been told these are the best therapies out there. 

    Has anybody been through these and if so, how are you doing? what are the side effects, and what is the difference between the 2?

    I have just been diagnosed as a stage IV melanoma patient, and have been told these are the best therapies out there. 

    Has anybody been through these and if so, how are you doing? what are the side effects, and what is the difference between the 2?

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  • Replies
      nickmac56
      Participant

      sorry to learn of your diagnosis, and welcome to supportive community. One really god way to  start earning about your options is to search the forum using search terms such as "clinical trial", "national cancer Institute", or the terms you used. Those therapies are all in the clinical trail stage (not yet aproved by FDA) and therefore strictly controlled and in experimental phase. There are many conversation threads that speak directly of people's experience. 

      There are many different points of view out there about how to proceed – such as doing IL-2 first, then Yervoy (Ipillimumab), [both approved] then moving on to the NIH or place such as MD Anderson for clinical trial participation. Much depends on location of your tumors, extent (do you have a harvestable tumor so they can extract cells to replicate), your age, overall health and speed of your metastasis. For clinical trials there are other requirements as well – go to clinicaltrials.gov and search for trials by using terms such as "TIL AND NIH" and you can read the inclusions and exclusions. 

      You ought to be with a melanoma specialist. It's worth traveling to get one. Many of the treatments are specific to a particular mutation you might have – you should be tested and know if you are BRAF positive, or HLA-2 positive for example. Many of the clinical trials are targeting specific mutations. 

      Hope this helps a bit – hang in there and stay positive.

      Nick

      nickmac56
      Participant

      sorry to learn of your diagnosis, and welcome to supportive community. One really god way to  start earning about your options is to search the forum using search terms such as "clinical trial", "national cancer Institute", or the terms you used. Those therapies are all in the clinical trail stage (not yet aproved by FDA) and therefore strictly controlled and in experimental phase. There are many conversation threads that speak directly of people's experience. 

      There are many different points of view out there about how to proceed – such as doing IL-2 first, then Yervoy (Ipillimumab), [both approved] then moving on to the NIH or place such as MD Anderson for clinical trial participation. Much depends on location of your tumors, extent (do you have a harvestable tumor so they can extract cells to replicate), your age, overall health and speed of your metastasis. For clinical trials there are other requirements as well – go to clinicaltrials.gov and search for trials by using terms such as "TIL AND NIH" and you can read the inclusions and exclusions. 

      You ought to be with a melanoma specialist. It's worth traveling to get one. Many of the treatments are specific to a particular mutation you might have – you should be tested and know if you are BRAF positive, or HLA-2 positive for example. Many of the clinical trials are targeting specific mutations. 

      Hope this helps a bit – hang in there and stay positive.

      Nick

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