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Old Tue Aug 9, 2016, 10:51 PM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 830
Hi Katail S

I had pancytopenia for many years before MDS finally reared its ugly head, so I guess I just want to encourage you to hang in there. Like you I was monitored 3-monthly. Watch and wait is a bit scary at first but if you're able to live a pretty normal life you can get used to it! It sounds as though you know how to look after yourself with a healthy diet and exercise.

Just one suggestion - monitor your results yourself (I spreadsheet the pertinent ones) and always question any changes.

All the best ... I'll be watching for your posts!
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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. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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