t-cell LGL leukemia... or not?

Tapioca
Tapioca Member Posts: 2
edited January 2023 in Leukemia #1

I'm sorry if I repeat this, I posted it 2 times as a comment on similar arguments, than I thought maybe is better to create a new topic. I'm new in the forum and I don't know how is better.

Hallo, I'm a 43 y.o. male and I've been diagnosed of t-cell LGL leukemia... or maybe not! I can't still understand the mechanism of this illness, and doctors can't give exact answers, maybe someone of you can help me. I write "maybe not" because actually I do not have any kind of cytopenia, neutrophils are higher than 2000, lymphocites low then 3000, hemoglobin is 13. But I have 22% lymphocites with LGL caratheristics and t-cell receptor analysis defined a monoclonal T-cell proliferation. Parameters of immunogram blood tests are now the same than 12 years ago (even better). In 2006 I tried to understand with an hematologist why I had always in the analys an higher % of lymphocites compared to neutrophils, a low CD4/CD8, very low B lymphocites and moderate high t-killers. Last year in september, after recurrent infections I tried again to understand what was the deal, and only now after several months and doctors, looks like that someone understood what is the problem. Since my clinical picture is good and I do not have any cytopenia, she said I don't need any treatment, I should just be under observation. I guess this process is going on not less then 12 years (probably more), just earlier noone gave a name to it. I read on the net that medium life of people with this kind of desease is 10 years... but from when? From the moment the disorder begin (in this case I should be really lucky since I have it since 12+ years) or from the moment of a cytopenia conditions that justify a treatment? With CBC analysis parameter that I have know, can I call myself a leukemic or I have just a chronic disorder?

Comments

  • jalise
    jalise Member Posts: 4 Member
    #2

    Hi there,

    I see this post is a few years old. How have you been? Have you gotten to the bottom of your illness? I too am in limbo of the diagnosis process with LGL

    hope you’re well!

  • Neda55
    Neda55 Member Posts: 5 Member
    #3

    My father was diagnosed with T-LGLL last year in mid-August. He is 79, at the time of diagnosis he did not have any symptoms, but his CBC was abnormal. He started on Methotrexate (MTX )15 mg /weekly and after the first dose he had a huge drop on his Hbg (from 8.1 to 5.3). He has been on MTX for 4 months and his doctor increased his dosage from 10 mg to 20 mg after 2.5 month. While he has been on MTX he also gets blood transfusions every 2 or 3 weeks depending on his HGb level (he gets that when his HGB below 8).

    Even though his doctor added Aranesp® (darbepoetin alfa) injection 200 mcg every other week for the last 2 months, his Hgb has not shown any improvement. He is very dependent on blood transfusions which he hates a lot and his doctor is also concerned about the Iron overload.

    Last month he showed some partial improvement on MTX (Has not had any transfusions for one month) but then his Hgb dropped from 8.1 to 6.5 in 1 week.

    I would really like to know if any of you have the same story and how/ what you did to help with Anemia caused by T-LGLL. Is it too soon to change to Cytoxan?

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