Hi and Hello

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Joined: 01 Dec 2009 21:52
Location: Essex

Re: Hi and Hello

Post by chris » 03 Feb 2021 09:13

Hi Paul

Goodness me! So good to hear from you again after all this time -though clearly not for happy reasons! Your situation was so very unusual - to go from the brink of an SCT to such amazing haematological improvements was rare - a remission is unprecedented in MDS. I think it was I who said that because of that rare event, logically either your initial diagnosis was wrong or something previously unheard of had caused the change. I recall you telling us about your VitaminC and fruit juice cravings and you wondering if that had helped?

Have your clinicians ever had any theories as to what had happened to bring about the improvement and then the deterioration? It must be so disappointing for you but good that you had a period of respite. You’re certainly a medical mystery!

I hope that you have a good match and that all goes well with your imminent transplant. If you feel up to posting I’m sure people would love to hear how you’re getting on. Meanwhile stay safe from Covid and keep well.
Best wishes
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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