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Old Sun Oct 11, 2015, 06:39 PM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
I had ICUS for at least 6 years before being diagnosed with MDS. At that time it was just called "idiopathic neutropenia". At diagnosis my haematologist thought I'd probably had MDS for 2 years. My GP had become complacent. At the time I was having CBC's 3 monthly and he had got used to seeing all the anomalies and treating the recurrent infections. I had also had low globulins for 9 years and that was never picked up on until I was diagnosed with MDS. I was only diagnosed because my GP wasn't available one day and I saw someone different. This GP insisted that I consult with a haematologist (hadn't done that for 3 years).

It's important to monitor your own blood results. You might want to create a spreadsheet. If you need an example I'm happy to private message mine.
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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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