I Have Hairy Cell Leukemia

A Hairy Cell Leukemia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Hairy Cell Leukemia. You're not alone. 25 People

    Diagnosed On Fri 13th

    I was just diagnosed with HCL on Friday the 13th. I had a bone marrow aspiration and a biopsy yesterday. Chemo starts next week. they had a very difficult time doing the marrow aspiration b/c I am apparently already very sick with this, and the marrow was too full already of...
    aac3 aac3
    4 Responses Jul 18, 2012


    My husband, has had low white, red counts and platelets, and a negative bone marrow biopsy for 3 years now. He just had another biopsy and was diagnosed with Hairy Cell Leukemia, he is not sick, no infections, just tired and muscle aches and pains, they are suggesting no...
    2 Responses Feb 18, 2013

    I am a 43 yr. old female

    and finished my chemo infusion this past March. I would like to talk with people who have the same cancer and are also female. It's rare, but more so for females and am looking to share experiences, side effects, symptoms, etc. Thanks
    ddetlor ddetlor
    4 Responses Apr 21, 2014

    Hi, I am a 54 year old female

    and I am Dutch. I live near Amsterdam in the Netherlands. I got diagnosed with HCL on 22-07-2014.
    jolandamariette jolandamariette
    56-60, F
    1 Response Jul 27, 2014

    I want to know how soon

    after treatment for HCL did you return to work?
    Dtstexas Dtstexas
    36-40, F
    2 Responses Jul 28, 2014

    14 years ago I was diagnosed with HCL.

    I was careful about my diet - juicing etc. for awhile but now it came back. I had gotten married in 8 years ago and turns back to poisonous processed foods with an addiction to kip ink food. I'm not sure about the association but now after my 2nd treatment I am trying to avoid...
    cspang1 cspang1
    61-65, M
    1 Response Sep 8, 2015

    Hairy Cell Leukemia Plus I Have A Question About Wbc

    I am a 47 year old female with standard HCL. I got my first, and hopefully only, treatment with Cladrabine in August of 2011. It went very well for me. I never had a drop in WBC or platelets. I experienced no fever. I did feel a bit under the weather for a few months, continued...
    runnersuz runnersuz
    3 Responses Dec 19, 2011

    Diagnosed At 37 -

    All of my symptoms were explainable by stress of work and kids.  We were in the process of relocating for my job when I had a cold I could not get over.  I went into a weekend medical clinic for an antibotic. They ran a blood test and told me I had to go immediately to the...
    Dtstexas Dtstexas
    36-40, F
    1 Response Oct 2, 2011


    My father was diagnosed with HCL last summer and went through one round of chemo last September. He went in for his 6 month check-up and his counts weren't where they were supposed to be, but up and looking good. Last Monday he went in for his yearly check-up and his count is...
    daddysgirl33 daddysgirl33
    1 Response Aug 1, 2012

    Navy Veteran With Hcl

    I am a Navy veteran who was diagnosed with HCL in 1999. I suffered a relapse in 2008. In 2010 the VA recognized HCL as an Agent Orange related disease. To qualify for a service connected disability (HCL) must have been in-country or on the in-land waters of Vietnam. I would like...
    lonsboda lonsboda
    61-65, M
    2 Responses Dec 13, 2012

    Diagnosed After Eight Years

    A have blood tests every six months due to taking cholesterol medication.  On my last routine visit my VA Doctor was very alarmed at my very low (1.2) White Blood Count and my slightly low platlet count.  Turns out my white count has been dropping steadily since 2001...
    FLCoyote FLCoyote
    61-65, M
    5 Responses Nov 12, 2009

    I'm 39yrs old I was diagnosed with hairy cell

    5/2013 in my 7 th month of pregnancy.. Was scared, devastated, depressed. On top of that also had pregnancy complication for delivery (partial previa) doctors wanted to do c-section. I was afraid of having c-section and infection. It was a very scary time for me. With low wbc...
    Staunton Staunton
    46-50, F
    2 Responses Jan 16, 2014

    I just posted something here

    but dont know how to at something to that post. So I start again. I am a Dutch woman of 54 yo. I am diagnosted with HCL last tuesday. I have been tired for so many years now. Always thought that i was a softy ;-) thought that it was my job. Two winters ago i kept on getting ill...
    jolandamariette jolandamariette
    56-60, F
    3 Responses Jul 27, 2014

    I was diagnosed 10/31/2014 I am 46,

    wow what a shock. I am currently in a study at MD ANDERSON in Houston Texas, I went through the 5 day's of Cladribine. and spent the next 8 day's in the hospital with a fever. I just started Ritoxen last Friday. I will be getting this once a week for 7 more weeks, has anyone...
    46-50, M
    1 Response Dec 17, 2014

    38yo And Just Diagnosed With HCL - 03/29/2013

    Hi everyone, I am a 38 yo male who has just been diagnosed with HCL. I have been tired and fatugued for more months now (9months) and never new why. Always associated it with my management consulting job, long hours and travel. Had abdnorminal pains, my doctor asked for a CT...
    Vignesh74 Vignesh74
    1 Response Mar 31, 2013

    HCL In Remission.

    I was diagnosed with HCL 2 years ago, never had any symptoms, they found out after I did a routine blood test. I went through 5 sessions of chemo (cladribine), 2 months of rest after that, and little by little life came back to normal, now my cell counts are normal and the doctor...
    newcycle newcycle
    5 Responses Jun 1, 2013
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