Home Forums Melanoma Diagnosis: Stage IV www.savelockysdad.com

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  • #21552
    erinmay22
    Participant

    Hey Folks, months ago I ‘met’ a fellow Melanoma warrior! He, like many, is desperately trying to get access to anti-pd1 and has run in to a number of challenges. They have started a petition to send to Merck and BMS – you can check out his story here: http://www.savelockysdad.com

    Consider helping getting this for compassionate use! I don’t know if any of this works, but it can’t hurt, right? I feel very lucky I was able to get in a pd1 trial. I know not everyone else has that same opportunity!

    Thanks,

    Erin

    4 Steps:

    VISIT our site http://www.SaveLockysDad.com and view our video (on website, on YouTube, or via facebook)

    1. SIGN the Petition (http://chn.ge/13ROWds)

    2. LIKE our facebook page (https://www.facebook.com/savelockysdad)

    3. FOLLOW us on twitter @savelockydad and RETWEET our tweets. (https://twitter.com/SaveLockysDad)

    4. SHARE THIS STORY WITH ALL OF YOUR FRIENDS — via Email, Facebook, Twitter, LinkedIn, word of mouth. Every person counts!

    #62378
    Catherine Poole
    Keymaster

    I’ve looked into this and can’t seem to find out what preempted him from getting into the trials? He would be tossing the dice on those anyway, possibly getting the chemo. Do you know why he can’t qualify? Compassionate use is very hard to get.

    #62379
    erinmay22
    Participant

    Catherine –

    My understanding his first time trying to get in the trial there were brain mets and weren’t stable. Got those stable and then he was going to get in but had a bowel obstruction and had to have surgery to remove. Was told couldn’t do pd1 after the bowel surgery.

    he’s done:Ipi, IL2, MEK & BRAF inhibitor trial from GSK (am now on their commercial product)

    Zelboraf as well as 6 x Gamma Knife, leg radiation, craniotomy and a few other surgeries.

    The last thing really he hasn’t tried is TIL. Right now he’s slotted to start that in Sept at MDA…

    #62380
    Catherine Poole
    Keymaster

    The bowel obstruction wouldn’t prevent his participating. I have left a message with the family to find out more but not heard back. He might instead try for the ADC trial.

    #62381
    erinmay22
    Participant

    yeah I didn’t get his comment about the bowel obstruction because I had that surgery done and was still allowed in. I was told by the doc at Yale I wouldn’t be allowed in if I still had the obstruction…

    I’ll leave an email with Nick also that you tried reaching out. I don’t know much about this ADC trial? but keep hearing about it. I’ll have to look in to it more!

    Thanks so much! You’re such a great patient advocate!

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