The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Melanoma Clinical Trials – The Debate on the Rules

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

  • Post
    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

    Loading spinner
Viewing 1 reply thread
  • Replies
      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.

      Loading spinner
      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.

      Loading spinner
Viewing 1 reply thread
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.