LGL

feistygal
feistygal Member Posts: 4
edited March 2014 in Leukemia #1
Looking for LGL survivors with whom I can chat

Comments

  • turnerk
    turnerk Member Posts: 1
    #2
    Hi, I too have LGL. If you would like to chat, would love to hear from you.
  • feistygal
    feistygal Member Posts: 4
    #3
    turnerk said:

    Hi, I too have LGL. If you would like to chat, would love to hear from you.

    Yes, I'd like to chat. So far I've heard from 3 people. Would like to know how long you've been diagnosed and whether or not you're going through treatment. Feisty Gal.

    Feisty Gal
  • corry
    corry Member Posts: 3
    #4
    turnerk said:

    Hi, I too have LGL. If you would like to chat, would love to hear from you.

    I know it's been nearly a year since your message, but if you are still interested in sharing news with someone else having lgl, please reply.
  • Ennlisa
    Ennlisa Member Posts: 5
    #5
    corry said:

    I know it's been nearly a year since your message, but if you are still interested in sharing news with someone else having lgl, please reply.

    LGL leukemia

    husband just got diagnosed and i cant seem to find much info only one doctors name in hersheys, pa anyone else in this situation that would like to compare notes he is 40 and no family history of this anyone else got any other ideas, tips or suggestions that can help ??

  • Ennlisa
    Ennlisa Member Posts: 5
    #6
    corry said:

    I know it's been nearly a year since your message, but if you are still interested in sharing news with someone else having lgl, please reply.

    LGL leukemia

    husband just got diagnosed and i cant seem to find much info only one doctors name in hersheys, pa anyone else in this situation that would like to compare notes he is 40 and no family history of this anyone else got any other ideas, tips or suggestions that can help ??

  • dadoftwins
    dadoftwins Member Posts: 13 Member
    #7
    Ennlisa said:

    LGL leukemia

    husband just got diagnosed and i cant seem to find much info only one doctors name in hersheys, pa anyone else in this situation that would like to compare notes he is 40 and no family history of this anyone else got any other ideas, tips or suggestions that can help ??

    41 with LGL

    HI  I just posted to share our story of my husband's LGL.  here is what I posted on a different thread.

    My husband was diagnosed with LGL Leukemia 14 months ago (Jan, 2012). We had just lost his Dad to Multiple Myeloma four months previous. It's all been overwhelming. I would like to reach out to any LGL patients, caregivers, spouses etc. It's been very difficult. We thought we were on the right track with Methotrexate and prednisone, but were told yesterday (march 13, 2013) that his hemoglobin took a dive and the LDH spiked - more than doubled from normal range just this past December.

    We are still in a bit of shock and down in the dumps. But we have twin 3 1/2 yr old girls who need us. Jim and I did not find each other until we were 35 so we had a bit of a late start. He is now 41 and is quite young to come down with LGLL. Our doctors at OSU James Cancer Clinic are great. But we are left feeling that this damn cancer will always with be with us. The doctors keep trying to reassure us that this is a cancer you live with, and not die from. Right now it's hard to believe that.

    If you would like to share your experience with treatment for LGL I'd appreciate it. I'm feeling quite alone and I don't want to show my husband just how terrified I am.

    thanks!

    I'd love to chat with you.  I'm not usually available until after 9pm most nights.  We are in Columbus OH and seeing Dr. Porcu and Dr. Wong at Ohio State Univ - James Cancer Hospital.  So far we respect them and their treatment plan.  I have to keep telling myself that LGL isn't that bad.  then the little voice in my head says: "yeah - but it's still cancer!!"

    I am starting my own research on holistic healing in conjunction with traditional medicines.  I'm not into all the herbs and stuff - just better diet, exercise and clean living.  I'm big into vitamins too - Shaklee only.  And the biggest option of all - prayer.    Please let me know if you'd like to further come diagnoses etc.  I'm here.  thanks... Amy

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