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Old Fri Oct 12, 2018, 01:06 PM
David T David T is offline
Join Date: Oct 2018
Location: London, England
Posts: 2
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.
David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions, waiting for a SCT.

Last edited by David T : Fri Oct 12, 2018 at 01:17 PM. Reason: Correction
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Old Sat Oct 13, 2018, 01:03 AM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 545

Welcome to the forums. I am sorry for the diagnosis, but it sounds like you are taking it in stride and have a positive outlook. Vidaza is a standard treatment option both for treatment of MDS, and as a bridge to transplant. There have also been a good number of studies suggesting that Vidaza may help with a process known as chemo-sensitization, which may be beneficial during transplant, as it makes your mds cells more susceptible to destruction through the pre-transplant regimen.

As for your diagnosis, anything outside of the low and very low risk suggests that transplant as soon as possible is probably the best option, if I recall correctly.

I received my transplant almost 5 years ago now, and was trending toward that higher risk category. I did 2 rounds of vidaza prior to transplant and have seen several examples of people who followed this regimen with successful outcomes.

I wish you the very best over the next few months.
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Tue Oct 16, 2018, 05:51 PM
David T David T is offline
Join Date: Oct 2018
Location: London, England
Posts: 2

Thanks for taking the time to reply and for offering encouragement to others, long after your own successful treatment.

It is a shame to see so many interesting threads about success stories suddenly stop, in some of the forums I have visited.

I assume that after a successful SCT the patient wants to put the experience behind them, when they could be of so much help to those who are about to go through the experience.

Best Regards

David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions, waiting for a SCT.
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Old Wed Oct 17, 2018, 12:15 PM
GoodDay5150 GoodDay5150 is offline
Join Date: Sep 2014
Location: Centennial, CO
Posts: 123
Hey David. We are all sorry to hear that you have MDS, but like Dan sd, you seem to have a positive outlook. That will definitely aid in your recovery. Myself and many others here have a lot of posts regarding our transplant experience(s), and are happy to answer question or concerns that you may have. My post PNH transplant experience has not been without issues, but I am much better off now than I was before my transplant. I have also learned who my donor was, and I look forward to communicating w/ him in the future. (This just in the last few weeks.) I was a bit freaked out when I learned of my diagnosis, and I had never heard of PNH, but I did my best to try and remain positive.

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Old Wed Oct 17, 2018, 04:05 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 685
Hi David,

Sorry to read your story. Have the doctors done a complete differential diagnosis to rule out things that can mimic MDS? Or do you have MDS-specific cytogenetic abnormalities or significant dysplasia? I am just asking because you are young.

Wishing you the best! Stay strong!
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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