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Old Tue Oct 17, 2017, 10:35 AM
JoMac53 JoMac53 is offline
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Join Date: Sep 2017
Posts: 75
Quick update before I go for blood draw & Granix shot today -- I'm going to refuse it, no matter what the blood work shows! I thought it was going to kill me last week, symptoms from the shot are, increasing, getting worse & lasting longer. Almost went to ER but hate to do that so didn't but honestly thought I might die from a heart attack. I really believe the Granix is driving my platelets down, too, even though the nurse said it could just be my disease. They had slowly decreased from 127 to 121 on their own but since getting these shots they've jumped down weekly by 15, 24, & 14. I don't yet know how much damage the 4th shot did last week. The only numbers going up are the other white cells, not neuts.

I've started taking the K2(MK-4) 45mg doses with vit. D. along with some other supplements, and reduced my already low carb diet to a therapeutic ketogenic range. I'm going to add fasting as well. I really wish I could find a doctor who would support these treatments, and advise me more knowledgeably about supplements, but that's not likely to happen. I'm going to read the messages to see what supplements others here have taken or are taking. I haven't been able to spend too much time here because I get too depressed.

The Dayspring Cancer Clinic in Scottsdale, AZ, does the whole protocol for what my own research led me to but they cost $18,000 a month. The person I spoke to said they haven't had any MDS patients but MDS does exhibit the "Warburg effect" so should respond to their treatments.

Well, that's it for now. I'll update later today. I see the hema/onco doc next Tues. Don't know what he'll say about my 'refusal' but it is what it is.
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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