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MDS Myelodysplastic syndromes

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Old Thu Oct 25, 2012, 01:50 PM
Bambam Bambam is offline
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Location: Vancouver, BC, Canada
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Platelets increasing in MDS

Until last month, my platelets were in normal range. However, last month they were reading 239 and now are 452. My Hb ranges between 102 and 109 and of course, other readings are abnormal. However, it's the platelets that I don't understand. Any thoughts, please?
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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Old Thu Oct 25, 2012, 02:21 PM
SarahL SarahL is offline
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Platelet Acceleration

Brenda:
Mine suddenly started accelerating at the speed of 20,000 a day - they were low for a year and a half. Last labs - they are declining again. Don't judge by one or two readings....this is a wacko disease and full of surprises! My WBC was 4.00 10 days ago - Tuesday back to 2.8. Be patient. They'll go up and down. I'm still waiting to hear about Procrit. Today my onc's nurse told me I cant get a shot unless my hemo is 10 or below. On Tuesday it was 10.6. I see her again next Tuesday. Now I have to hope for a drop??????
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Old Thu Oct 25, 2012, 03:02 PM
Bambam Bambam is offline
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Location: Vancouver, BC, Canada
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Thanks Sarah. It helps to know that others get these swings and that this is a whacko disease, as you so eloquently put it
I really dislike focusing on all these things as they interfere with my enjoyment of life but find myself second-guessing each little "symptom" such as indigestion, headaches etc. and wondering what could be happening.
I have "joined" www.inspire.ca an integrated health centre for cancer patients where the focus is on wellness and where the MD's work as team members with the surgeons etc. I like that they encourage me to focus on my HEALTHY bone marrow cells etc. However, each time I get a changed (worse) blood result, it takes me down the road where I feel helpless again.
The rain has stopped for a while, so I think I will go for a walk with my dog and try to focus on the moment. Thanks again.
__________________
DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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