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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 2 pre-op physicals for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy are AML 25% blasts CD34 with 3:3 mutation, INTERMEDIATE risk
    05/30/16 Undergo 7-3 treatment
    06/??/16 TSHTF!! 7-3 doesn't touch AML, but 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 LA, North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    Protocol 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BM biopsy shows CD34 cells 6.9% above background level.
    Three 5 week cycles of azacitidine, . Life is good. Azacitidine is minor annoyance.
    04/16/17 BM biopsy shows CD34 12% above background, cycle dropped to 4 weeks. Change regarded as minor.
    Oncologist says my run is unprecedented.

 

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