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Thread: Anybody else in here have Refractory (terminal) AML??

  1. #11
    Senior User Dead Man Walking's Avatar
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    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
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    Actually, I understand where the doctors are coming from. If you're going to do a major cancer clinical study, you're talking about hundreds of patients, an expenditure of millions of dollars, and 4 - 7 years of the doctor's life to do the study. Once the exclusion criteria are established, you cannot change the study protocol for any reason. If you do, the study no longer meets the basic standards of scientific rigor and clinical control that are required for a valid clinical protocol, and no medical journal or society will touch a flawed study with a 10 foot pole. The study will never get published or recognized, and no drug company will bet hundreds of millions of dollars of its own money trying to sell a "flawed" cure.
    Last edited by Dead Man Walking; 07-16-2017 at 06:30 PM.
    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!!!

  2. #12
    Senior User Dead Man Walking's Avatar
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    May 2017
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    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
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    Moved to separate post....
    Last edited by Dead Man Walking; 07-29-2017 at 03:23 PM.
    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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