Hairy Cell Leukemia

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MANDYNEE
MANDYNEE Member Posts: 2
in Leukemia #1
My dh was diagnosed with HCL almost two months ago and he will start chemo soon if his counts are appropriate.

We have three children (8, 5, & 4) and I know I should be strong, but I feel so weak and fragile inside. I have to keep it together for the kids and I don't want to scare him, but I am very scared! I am so confused that I cannot even articulate my feelings, concerns, etc. I knew we would face hardship, I never dreamed it would be so soon.

Thank you for listening.

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  • marqimark
    marqimark Member Posts: 242 Member
    #2
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    Sorry about the HCL dx

    My battle with colon cancer has been tough physically. First my mom got it now me.

    My wife had a hard time but has bounced back now that I am NED.

    I hope that we can help with our prayers and encouragement.

    Please vent, I think it helps. And you have every right to be upset, scared, nervous and angry.

    Mark
  • 3824
    3824 Member Posts: 1
    #3
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    HCL
    My husband was diagnosed with HCL over 14 years ago had his first treatment with 2CDA was only ok for a few months than it came back but we had a **** doctor. Again he was treated with 2CDA but did not go well only because the hospital and doctor had NO CLUE....Now 3 years ago it was back but now we went to University of Pennsylvania in Philadelphia and again was treated with the 2CDA...So far he is doing ok...The KING and top doctor for HCL is Dr. Saven in LaJolla CA at Scripps Clinic he did the clinical trial on HCL with the 2CDA and know it all...Best of Luck you will be just fine..
  • HairyCL
    HairyCL Member Posts: 3
    #4
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    Hoping treatment was a success

    MANDYNEE, 

    A lack of information about this rare disease is our worst enemy. Hopefully you've already found the information and help you needed. For anyone searching for answers and helpful, current information regarding HCL, visit the Hairy Cell Leukemia Foundation web-site. This provides information about the rare disease, has a list of the Centers of Excellence, as well as having questions answered by the worlds most knowledgeable doctors treating this disease. Follow this link for this help:

    https://www.hairycellleukemia.org/

    Hope that treatment was a success And the children have continued to grow with a loving father in their lives. I've had great success with knowledgeable doctors at The James, Ohio State University Medical Center. They didn't provide my initial treatment, but after my wife found, them they have given great advice on treatment of my unique cancer related group of problems.

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