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MDS Myelodysplastic syndromes

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Old Mon May 23, 2016, 10:19 AM
Bossywife Bossywife is offline
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Smile What affects your blood counts?

My husband's blood numbers took a dive at the beginning of this year, and we didn't really put it all together until recently when I put all his numbers into a spreadsheet from the past 4 years.

We notice a dive right at Christmases. Which is interesting, because this is the only time of year he eats a lot more sugary and unhealthy food, and even drinks Alcohol (not a big drinker).

I also noticed a decline in his platelets after a conversation with the Diabetes Doctor who told him aspartame was the lesser of two evils when it comes to sugar vs aspartame. As soon as he was diagnosed, I stopped buying him any aspartame and just suggested he not drink as much pop, and his numbers improved. Then when he swapped back to aspartame briefly ... his platelets shot down.

I'm wondering if any of you have put together any kind of trend.
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Old Tue May 24, 2016, 05:03 AM
Cheryl C Cheryl C is offline
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The only trend I've noticed is that when I take vitamin d my platelets improve and stay in normal range. Haven't noticed any aspartame effect but i do chew gun containing it.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Wed May 25, 2016, 08:12 PM
maggiemag maggiemag is offline
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BW, I think it depends upon what you consider a "dive" in numbers. They are rarely static. My HB can vary by as much as 0.8 per week, HCT by 3%, platelets as much as 30K. I consider that normal, and apparently so does the physician. Maybe you can give us some numbers and the trends. The only thing I've ever noticed is the HCT and HB can go down a bit if overhydrated and up if I'm a bit dehydrated.
Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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Old Sat May 28, 2016, 11:04 PM
Cheryl C Cheryl C is offline
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I agree with maggiemag. I sometimes have a big jump or a big drop and usually within a couple of months am back to my usual abnormal "normal". There is even a difference between morning and afternoon results. No doubt lifestyle does have an effect at times. Apparently alcohol is a 'no-no' for MDS patients.

I spreadsheet my results too, and looking at the averages then comparing with previous years is very helpful.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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