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Melanoma Clinical Trials – The Debate on the Rules
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Melanoma Clinical Trials – The Debate on the Rules

› Forums › General Melanoma Community › Melanoma Clinical Trials – The Debate on the Rules

  • Post
    • December 11, 2010 at 11:18 pm
    EmilyandMike
    Participant

      Hello everyone:

      Hello everyone:

      I recently found a fundraising link for Tom McLaughlin who was featured in the NY Times article on melanoma clinical trials back in September. The story of Tom and his cousin was so sad.  I wanted to thank him for doing the interview and exposing the treatment of melanoma patients in these trials.  His mother sent me a link to the video below and it it a good one to share. Perhaps MRF has some suggestions on what we can do as individuals to make sure clinical trial rules are clearer and more fair.  These trials are the only real option for most people with advanced melanoma and because melanoma isnt like most cancers the clinical trials should reflect this!  And it really pisses me off that there arent more trial options for stage 2/3 which would logically seem to be the best time to do treatment – BEFORE it spreads.  Melanoma is so unfair but these clinical trials should not be.

      Video from Nov

      http://www.bakersfieldnow.com/news/investigations/106491678.html?tab=video

      NY Times article from Sept

      http://www.nytimes.com/2010/09/19/health/research/19trial.html

      Fundraiser for Tom

      http://www.raiseitnow.com/4254/thomas-struggle-with-melanoma/

       

      Thanks for listening – felt like venting

      Emily

      wife of Mike, stage 3a

      http://www.emandmichael.com

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        • December 12, 2010 at 12:46 am
        Lori C
        Participant

          An incredibly frustrating story.  I know there are tens of thousands of others like this. 

          I am very interested in this subject.  I am writing about Will, and as many here know, he was initially diagnosed as stage III and put into a double blind placebo trial – ipilimumab versus placebo.  He had no side effects and his phyisician believes he got the placebo.  His cancer advanced and our attempts to get ipi for compassionate use were denied because of the trial's rules.  But by then he had almost literally no other options (he was b-raf negative and negative for C Kit and the other common mutations).  He was too sick to qualify for the HLA trial.  And the biochemotherapy devastated his body. 

          It is obvious that the rules are not unreasonable in terms of lab rats, when statistical data is being considered..  But human beings are not lab rats.  There has to be a better way.  Watching this young man's mother cry in the video was wrenching.  22 years old.  What a tragedy.

          • December 12, 2010 at 12:46 am
          Lori C
          Participant

            An incredibly frustrating story.  I know there are tens of thousands of others like this. 

            I am very interested in this subject.  I am writing about Will, and as many here know, he was initially diagnosed as stage III and put into a double blind placebo trial – ipilimumab versus placebo.  He had no side effects and his phyisician believes he got the placebo.  His cancer advanced and our attempts to get ipi for compassionate use were denied because of the trial's rules.  But by then he had almost literally no other options (he was b-raf negative and negative for C Kit and the other common mutations).  He was too sick to qualify for the HLA trial.  And the biochemotherapy devastated his body. 

            It is obvious that the rules are not unreasonable in terms of lab rats, when statistical data is being considered..  But human beings are not lab rats.  There has to be a better way.  Watching this young man's mother cry in the video was wrenching.  22 years old.  What a tragedy.

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