Looking for experiences with the progression of MDS

Posted by momz @momz, Nov 7, 2023

Good morning ,
I am looking for shared experiences with the progression of MDS and or other blood cancer. What are signs and or symptoms to be aware of . I am experiencing low WBC count and frequent headaches lately.
Staying proactive and aware of new symptoms.
Thank You ☺️ Brenda

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.


Hi Jean Pierre,
There are so many. If you Google mds-foundation.org, you will get a map showing all the Centres of Excellence in the US. For Canada you can get the MDS Index at mds-can.ca. I live in Canada, and I hear that the Sunnybrook Hospital in Toronto is very highly regarded. Hope this helps.

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Hi I googled this and the Centers for Excellence in the USA are The Mayo Clinic.


I do not know my IPSS-R
Score is or even what that means? I will definitely be asking for more information and explanations next Dr. visit. Much appreciation for sharing your knowledge.

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Hi Brenda! New here. Just diagnosed in July, but evidence suggests I have had the disease since 2020. You can go to Mds-foundation.org and order books about MDS, but more importantly use the online tool to find out what risk level the MDS has(Ipss-r or ipss-m). It is an important factor, but understand that about 1/3 of cases will develop Acute Myeloid Leukemia which has a lower survivability rate.

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