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Thread: I was completely healthy 1 week ago

  1. #11
    Newbie New User
    Join Date
    Apr 2017
    So I go Friday for liver mapping. The oncology radiologist re-staged me from stage IV to stage III. He said although my lived is riddled with tumors he sees no spread other than a suspicious lymph node adjacent to the liver.
    He feels that the SIRT treatment is the most aggressive they can offer.
    TACE is ruled out because my large tumor involves the portal vein and there is already a thrombus.
    He also recommended I discuss Hep C treatment with my gastro dr.
    According to the radiologist ... If all the stars align, there is substantial tumor reduction, and the Hep C is successfully treated, there is a vague possibility I could become eligible to go on the UNOS list.
    Who knows ��
    I'm just hoping for more time.

  2. #12
    Senior User Dead Man Walking's Avatar
    Join Date
    May 2017
    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
    Donnat: I'm sorry that it sucks big, flat rocks to be you right now, and that's a lot to have just dumped in your lap in a short time. I am writing because of your last line in the post above, and while you or I or anybody else would feel that way, that path could be a potential trap that could rob you of whatever quality of life you may have left, be it a few weeks or a few years. You can keep hoping for more time and living in a continuing state of anxiety about how long you have, and in so doing wasting all that time that you could have spent doing something that would actually be rewarding NOW. The key is to move past the initial shock of "being one of us special people in here " and realize that worry will NOT help defeat/postpone your health issues, and may very well shorten your lifespan in addition to whatever else you may have wrong with you. To look at it from a lot more positive perspective, what would you want to do if you knew you didn't have a lot more time? Whatever you choose to do, win, lose, or draw you won't have any regrets about those choices. I went from n00b to my current title in 8 weeks straight, and 7 of those weeks got erased from my memory, along with a lot of other stuff! As such, I consider myself lucky to have received a direct hit right out of the gate, and there wasn't anything to bind me to the past except smoldering ashes. I wish you the best of luck on your journey, be it short or long...
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    05/30/16 Undergo 3+7 chemo regimen
    06/??/16 TSHTF!! 3+7 doesn't touch AML, knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML. [:tombstone:]
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 12%
    Three 5 week cycles of azacitidine.
    04/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks.
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added
    Oncologist estimates survival time now 2 - 4 YEARS!!!


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