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  • #21950
    crburton28
    Participant

    My husband passed away on April 13th waiting for someone to open up the PD1 compassionate use trial. It makes me so angry that bureaucratic nonsense keeps people from getting life saving treatments. Now my husband is gone at the age of 43 and my 3 year old has to grow up without her father.

    Carla

    #64266
    Catherine Poole
    Keymaster

    I’m so sorry to hear this. But I would also say that PD1 isn’t necessarily a miracle drug and may not have worked for him. I totally agree that the difficulty to gain access is terrible though! My sympathy goes out to you and your family.

    #64267
    tbeau
    Participant

    Carla

    I am so sorry to hear about the loss of your husband. I am at a loss for words regarding your post, your heartbreak and your child being fatherless. Melanoma Sucks! Bureaucratic BS Sucks too! I am so sorry. You and your family are in my thoughts and prayers.

    #64268
    Anonymous
    Guest

    I’m terribly sorry for your loss Carla. You have what must feel like an impossible challenge ahead of you. But you’ll do well.

    Yeah, we try so hard only to be turned back in our efforts.

    Your anger is normal and healthy right now IMO. I was very angry and fustrated (actually, two years later, I still am a bit) because my wife was denied a seat on the IPI/PD1 combo trial at Sloan due to 3 small brain mets found 3 days prior to her first infusion.

    Now please take care of yourself and your child. Be kind to yourself and lean on others as needed. It takes time. There will be rough days and nights with plenty of “snot bubble” moments. But things WILL get easier.

    You’ll do just fine.

    Jeff

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