Hairy Cell Leukemia in 45 year old woman

PatchAdams
PatchAdams Member Posts: 271
in Leukemia #1

A dear friend was diagnosed with HCL a week ago and started chemo (2 kinds) on Monday. She's having daily chemo.  She'd been feeling bad for months and had a colonoscopy a few months ago because of feeling bloated all the time.  Now she knows it was an enlarged spleen and not something else.  She did have some pre cancerous colon polyps.

HCL is so rare to start with and very rare in women.  She didn't know there was more than one type until we did some research but she's reluctant to ask any questions.  

Any suggestions on what she should be asking?  Has anyone here had their spleen removed to help control this disease?  She was led to believe this was an easy cure but online it says 'not curable' just controlable. 

 

Thanks,

Patch

Comments

  • HairyCL
    HairyCL Member Posts: 3
    #2
    Hairy Cell Leukemia information

    Spleen removal is not generally considered to be helpful anymore. The spleen is enlarged because it is doing its job of filtering the Hairy Cells out of a HCL patient's bloodstream. Remove it and the body has lost this very functional filter. Anyone searching for answers and helpful, current information regarding HCL would do well to find the Hairy Cell Leukemia Foundation web-site. This site provides a wealth of information about the rare but treatable disease, get a list of the Centers of Excellence befor treatment, as well as have individual specific questions answered by some of the worlds most knowledgeable professionals about this disease. Follow this link for the most helpful current information:

    https://www.hairycellleukemia.org/

    Hope that your treatment can have as much success as I have had since finding knowledgeable help from a brilliant team of doctors at The James at 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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