Thread: MDS Low Risk
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Old Sun Jul 30, 2017, 08:18 PM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Hi majorindy - I've been on watch and wait for over 5 years now. I have a blood test every 4-6 weeks, depending on how I feel. My haematologist just gives me a request form for 6 at a time and I can choose when I have them. I keep a spreadsheet record of my results so I know at any time whether I'm still stable.

I live with an average WCC around 1.5 and neutrophils around 0.7, lymphocytes 0.3-0.4. As long as I don't have a drastic drop I'm quite happy to continue as I am. Although having Intragam for hypogammaglobulinaemia doesn't raise my WCC I believe it does help me fight infections. I see my haematologist about every 3-4 months. W&W is scary at first, but you will get used to being on that as long as your results remain reasonably stable.
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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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