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9 months have gone by since my initial diagnosis. I have a moderate-low risk factor. So far I have had three routine (every 3 months) blood tests to see the trends. White and red blood cell counts have actually increased slightly from those 3 years ago (we've been following my blood tests since 2021, and got diagnosed with MDS in spring 2025) and cells are now at the low end of the normal range. Neutrophilia is at 2.6, was as low as 1.44 a year ago. As I asked the doctor following my case, what we're looking for at this stage is both trends and stability. My readings do seem to be leveling off.
Platelets have been on a slow decline, and my last test just 5 days ago came in at 87, a new low. They were in the 160's 5 years ago, and been averaging downwards since. That seems to be my biggest cause for concern. Reading up on survival rates has been kind of discouraging, even though most texts about this point out that it is based on older data. I just can't seem to find updated information on this. The doctor seemed to suggest that the average expectancy for my risk level is about 5 years with no treatment, and up to about 11 years with the currently available treatments. That's sort of in the middle of what my mind considers both short and long. That would bring me to age 78, which certainly isn't considered old in this day and age.
There are no shortcuts to knowing how things will play out, every case is different. The hope is in the continued development of treatments for this rare disease.
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