T-Cell Large Granular Lymphocytic Leukemia

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  • monda
    monda Member Posts: 15 Member
    #22
    T-Cell LGL Leukemia

    Hello - I realise your positing is 3 years old I pray that you are doing well - if you are still interested my daughter have jsut been dianosed with same disease, please let meknow if you are intersted in communicating.

    Regards,

     

    Monda

  • bendanyh
    bendanyh Member Posts: 12
    #23
    bendanyh said:

    Treatment

    Hi tlglfighter, My situation is similar, except that after 14 weeks of MTX (weekly, incl. first 3 weeks of half dosage) without improvement, my DR switched me to cyclosporine + Prednisone (daily) . Looks this combination is better for me as after 2 weeks my hgb only dropped a little without needing a transfusion. Next Dr visit due next week. We'll see. You may want to discuss with your DR about switching to cyclosporine.

    lglfighter

    Posts: 1
    Joined: May 2014

    Update

    I've updated my situation:

    http://csn.cancer.org/node/268011

  • IVAA_Cures_LGL
    IVAA_Cures_LGL Member Posts: 4
    #24
    IV Ascorbic Acid Cured Me

    After 16 years of sufffering from T-LGL Luekemia, I cured it with IV Ascorbic Acid (IVAA). I have had normal blood counts since the first day I began infusions June 2006. It's the least harmful treatment you can take and I know of one other person who tried it and reported a remission.

    Read this research article published in the canadian Medical Association Journal: http://www.cmaj.ca/content/174/7/937.full

  • lolagaye
    lolagaye Member Posts: 1
    edited September 2018 #25
    IVAA cure sounds good

    so...this sounds great....I have not tried any treatments so far cause the scare the heck out of me....I am doing very well so far concidering I have the lowest of low immune system....how are you doing now?

  • DaveS2018
    DaveS2018 Member Posts: 2 Member
    edited April 2020 #26
    78 year old, two year T-Cell LGL patient

    For almost 2 years I have been on a weekly dosage of 17.5 mg Methotrexate.  My blood counts have somewhat stabilized (not good, just stable) and I have experienced NO obvious side effects of the Methotrexate.  At first, I was getting a blood transfusion about every 2 to 3 weeks.  However, more recently I have gone 16 months without a transfusion.  I have also never experienced any pain or discomfort (other than fatigue) from the Leukemia. At 78 years old, I feel very blessed.  My wife and I still travel extensively and love trying new adventures (sky diving, paragliding, helicopter tours, Jet boating, zip lining, Segway tours, etc.).  In my latest blood tests - this week - my lymphocytes spiked to 13.67 and my WBC spiked to 15.48.  Consequently, I am feeling a NEW fear that I have not experienced before.  Of course, with this coronavirus pandemic, my wife and have not been able to go to our health club every day and work out like we have always done.  Any personal experience with lymphocyte and WBC levels this high, would be helpful - if only to calm my fears.

  • gr
    gr Member Posts: 3
    edited December 2020 #27
    monda said:

    T-Cell LGL Leukemia

    Hello - I realise your positing is 3 years old I pray that you are doing well - if you are still interested my daughter have jsut been dianosed with same disease, please let meknow if you are intersted in communicating.

    Regards,

     

    Monda

    Hi, My husband just got

    Hi, My husband just got diagnosed few days ago and we are terrified . He is 52 and doctor is doing wait and watch approach. Is your daughter on any treatment ? Any new research or trials. Any night sweats she is experiencing?

  • gr
    gr Member Posts: 3
    edited December 2020 #28
    IV Ascorbic acid Infusion

    Who precribes the treatment and if you have update on Remission?

  • gr
    gr Member Posts: 3
    edited December 2020 #29
    jbacchi said:

    I was diagnosed in 1994

    I was diagnosed with T Cell LGLL in 1994 and for the most part have been on low dose methotrexate 15 mgs. every 4 weeks for the last 15 years.  Recently with in the last 2 years my hemoglobin count has been going down.  the doctor has increased my dose to 15 mgs every 2 weeks and it is still slowly going down (I have been on this dose for 2 months)  Now he says he wants to change the dose to 15 mgs every week.  After being so healthy for over 15 years it is a bit scary.  All the feelings come back and I remember what it was like not be well.  I was 34 years old and I had 2 very young children and all I wanted was to live long enough to see my kids grow up.  Well, now they are 26 and 23 and I am wondering if my time is up??  I was considering see Dr Thomas Loughran because it was his article in BLOOD that my doctor read all those years ago that put me on the meds that saved my life.  Hang in there.  I would love to talk to anyone else out there that has the same disorder as me.  If anyone has had a consult with Dr. Loughran I would love to talk to you.  I have a few questions, like how long did it take to get an appointment? and....What insurance does he take?  I have United HealthCare and I can only imagine what it might cost for an initial consult with him. 

     

    Take care everyone.  If anyone wants to talk, I am here.

    Josie

    Hi, Josie

    Hi, Josie

    Wondering how you managed to stay healthy any complimentary therapy or vitamins you took. If possible I can connect with you .Thanks

  • KTM
    KTM Member Posts: 3
    edited February 2021 #30
    Peer (patient-to-patient) support

    I was recently diagnosed with LGL, and it all feels so confusing and overwhelming to me; so, I'm working to develop more peer support resources to enable those of us who have LGL to share our hope, strength and experience. There's an LGL Facebook support group, but I am not on Facebook and have no interest in getting a FB account. My efforts are still in the conceptual stage, but what I'm envisioning is a monthly virtual support group, a phone tree, development of informational resources that are more patient-oriented (e.g., patient testimonials, medical info in layman's terms, etc.). Please let me know if you're interested. Thanks!

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