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Old Thu Feb 21, 2019, 09:38 AM
Johnc Johnc is offline
Join Date: Feb 2019
Location: Johannesburg, South Africa
Posts: 1

Hi All

After two weeks of blood tests and a bone marrow biopsy last week - I finally received the results back this morning from my specialist physician - unfortunately I have been diagnosed with MDS. So my journey of discovery and treatment begins.

In my search to better understand my condition I came across this forum and am grateful for the experiences and knowledge one finds on this forum.

Well that's it for now...

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Old Fri Feb 22, 2019, 10:00 AM
David M David M is offline
Join Date: Sep 2009
Location: Fayetteville, TN
Posts: 77

Hello Johnc,

I am sorry to hear of your diagnosis, but you have come to a good and helpful place (i.e. this forum)! I wish you well on your journey.

David M
David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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Old Mon Feb 25, 2019, 01:26 AM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 585
Hi John,

I am sorry for the diagnosis, but glad you found the marrowforums. This site has been a great source of information and support over the 9 years that I have been dealing with MDS, transplant, and the various side effects of treatment.
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. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Sun Mar 3, 2019, 07:20 PM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 840
Hi John

Welcome! You're right - this is a great place to come for information and encouragement. I've been hanging around for 7 years now.

Do you know what type of MDS you have?
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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Old Sat Mar 9, 2019, 07:40 PM
Eric 53 Eric 53 is offline
Join Date: Mar 2019
Location: Sacramento, CA USA
Posts: 3
Good luck John. I also just got here.
I'm 66 years old and was diagnosed with low-risk MDS back in 2010.

Not sure what your particulars are age-wise and disease-wise. It really does make a difference. Some people go into drug therapy right away and are looking for bone marrow transplants, while others do the watching and waiting, getting regular blood tests done to monitor the progression of the disease.

Good luck.
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