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Old Fri Nov 5, 2010, 08:37 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Taking CoQ10

I ran across a couple of article abstracts describing studies of CoQ10 in MDS conducted by Dr. Raza and others.

The first indicated some success in improving blood counts and even chromosomal abnormalities in some folks. You can find that one here.

The second, a follow-on study, attempted to figure out if there were identifiable characteristics that docs could use to screen which patients would be likely to respond to CoQ10. That was unsuccessful. Seven of the 29 patients enrolled had some improvement, but they weren't able to identify any useful markers for predicting which patients would respond. An abstract of that study is here. Seems to me it was a pretty small sample to try tease out that sort of info.

My takeaway from this was that, at this point, the docs don't have any data to figure out whether CoQ10 will help you (or your Dad). On the other hand, it clearly helps some percentage of folks.

So I started taking 1200mg per day of CoQ10 (the dose Dr. Raza used in those studies) a couple of months ago. It hasn't been long enough, at this point, for me to say whether it has helped. I did stretch out my last transfusion interval from 6 to 8 weeks, but other factors could have come into play.

Near as I can tell, coQ10 has no side effects, so I figured there was no harm in giving it a shot.

I haven't been able to find any studies with reported results for Curcumin, but I bought some anyway, based on Raza's interest in it. The Parkinson's community tends to take 900mg a day of that, but caution you have to work up to that dose because of gastrointestinal effect. I haven't started it yet -- and may not, since I'm about to enter a clinical trial. There are some reports of Curcumin being linked to bleeding (which might be an issue for low platelet folks), but I haven't been able to track those to an authoritative source.

Take Care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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