T-Cell LGL treatment

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  • DaveS2018
    DaveS2018 Member Posts: 2 Member
    edited April 2020 #22
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    T Cell LGL since Jan 2018

    I am 78 years old and was diagnosed withT-Cell LGL in January 2018, with hemaglobin at 6.2.  I was extremely weak, but experienced no pain or discomfort otherwise from the LGL.  I had transfusions every 2 to 3 weeks at first.  I am on methotraxate 17.5 mg once per week, and have experienced no side effects from the medication.   I am very active - Health club every day for a full workout, and my wife and I travel extensively.  My numbers have stabilized, and my oncologist says my T-Cell LGL is "under control" whatever that means.  I was able to go from July 2018 to November 2019 without a transfusion, and am maintaining my hemaglobin at a level around 8.  At first I had to have my blood checked weekly (which I considered a real hassle, since I travel so much).  However, for the last sever months, I only  have to have my blood checked every 3 to 4 weeks (works out much better with my  travel schedule).

  • KTM
    KTM Member Posts: 3
    edited February 2021 #23
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    DaveS2018 said:

    T Cell LGL since Jan 2018

    I am 78 years old and was diagnosed withT-Cell LGL in January 2018, with hemaglobin at 6.2.  I was extremely weak, but experienced no pain or discomfort otherwise from the LGL.  I had transfusions every 2 to 3 weeks at first.  I am on methotraxate 17.5 mg once per week, and have experienced no side effects from the medication.   I am very active - Health club every day for a full workout, and my wife and I travel extensively.  My numbers have stabilized, and my oncologist says my T-Cell LGL is "under control" whatever that means.  I was able to go from July 2018 to November 2019 without a transfusion, and am maintaining my hemaglobin at a level around 8.  At first I had to have my blood checked weekly (which I considered a real hassle, since I travel so much).  However, for the last sever months, I only  have to have my blood checked every 3 to 4 weeks (works out much better with my  travel schedule).

    To treat or not to treat?

    I was recently diagnosed with T-Cell LGL, after about 5 years of one "mysterious" infection after another and then a series of ER visits & hospitalizations for undiagnosable infections in 2020. I haven't started any type of treatment, as I'm concerned about side effects - both short-term and long-term - of Methotrexate; so, I'm happy for you and encouraged by your experience of doing so well and not having any side effects on the Methotrexate. I'm amazed that you're even able to travel - I haven't had the energy to travel much and, when I do, I end up sick - not certain whether that's from exposure to germs or from getting worn down and my own bacteria getting off kilter.

     

    I'm trying to put together an LGL peer support network, including a monthly virtual peer support group, a phone tree, and more patient-friendly resources posted somewhere centrally on-line. I'd love to hear from anyone who's interested in these types of resources!

  • Pfoxwest
    Pfoxwest Member Posts: 1 *
    #24
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    Has anyone ever been treated with filgrastim-Zarxio, neupogen? Are there any support groups? I have such severe bone pain with Zarxo. last night I took Zyrtec which was helpful

  • Italiangirl87
    Italiangirl87 Member Posts: 2 Member
    #25
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    Hello everyone, I'm writing from Italy and I'm looking for news about LGL-NK for my dad. It seems that the disease is extremely rare but I need to deal with various experiences, forgive my poor English and I hope you will welcome me well. Thank you 

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