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Old Fri Oct 12, 2018, 01:06 PM
David T David T is offline
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Join Date: Oct 2018
Location: London, England
Posts: 16
Waiting for a transplant for MDS

My MDS journey started two months ago, when I was diagnosed after going to the emergency room at my local hospital.

My Hb was 47 and my platelets were 14, so obviously I left it a bit late to seek help!

I am now receiving transfusions of blood and platelets weekly, until a SCT is arranged. Unfortunately my only sibling is not a match, so the search is on for a donor through the international register. I am 59 years old and otherwise in good health, so I'm reasonably confident of getting through the transplant.

They are thinking about putting me on azacitidine (aka vidaza) to stop the progression to AML while I am waiting for the SCT. My blast count is 6 to 7%, but I still don't know what type of MDS I have. I am at least INTERMEDIATE risk, but possibly HIGH or VERY HIGH according to the IPSS(R) scoring system.

It has been extremely interesting to read the other posts on this forum. They have given me a lot of encouragement, so I hope I can do the same for someone else who follows me on along this difficult path.

I will keep you posted as my adventure unfolds.
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David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. No genetic mutations. Developed into AML with FLT3 mutation while waiting for a SCT. Allogenic SCT - MUD in Feb 2019. Relapsed June 2019. Azacitidine, Venetoclax and DLI.

Last edited by David T : Fri Oct 12, 2018 at 01:17 PM. Reason: Correction
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