T cell LGL leukemia

jalise
jalise Member Posts: 4 Member
edited January 2023 in Leukemia #1

Hello everyone, so I’ve been trying to get to the bottom of my neutropenia. They picked it up in my routine blood work when I was pregnant. It’s been 3 yrs of limbo of not knowing what’s going on. My WBC and RBC are always low and my neutrophils are 150-400. I’ve had one bone marrow biopsy that showed the tcell gene rearrangement were active and then had another biopsy that didn’t show it. Went through about 6months of methotrexate that didn’t improve my neutrophil counts. My doctor is questioning diagnosis and I’m going in for another bone marrow. Has anyone who has been diagnosed with this had test show tcell rearrangement and then not? I’m kinda at a loss right now. If it’s not LGL what is causing these severe low neutrophils. I’ve been tested for auto immune, genetic etc…

Comments

  • Neda55
    Neda55 Member Posts: 5 Member
    #2

    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?

  • 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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