Just what is MDS

Just what is MDS, a.k.a. Myelodysplastic Syndrome?

"A group of conditions where too few blood cells are produced by the bone marrow."

Or, according to Marrow.org:

Myelodysplastic syndromes (MDS) are a group of diseases that affect the bone marrow and blood. Some types of MDS are mild and easily managed, while other types are severe and life-threatening. Mild MDS can grow more severe over time. It can also develop into a fast-growing, severe leukemia called acute myelogenous leukemia.

Now, that sounds scary.

The two more common types of MDS are:

• Refractory Cytopenia
• Refractory Anemia with Ringed Sideroblasts (RARS).

Refractory means resistant to treatment. But, these are MDS's less severe forms. They have a lower risk of turning into AML. Some patients with these forms of MDS may live with few symptoms and need little or no treatment for many years.

The doctor refers to my case as Chronic Refractory.

The Cause

What we have here is a chromosomal malfunction. Or, as the bone marrow report says:

Y chromosome loss with the addition to the Long Arm of Chromosome 11 (MLL Locus) and Interstitial Deletion in the Long Arm of the Other Homolog 11 and Deleton in the Long Arm of Chromosome 20.

Check out Numbers 11 and 20 in the picture. They look like one-legged men.

Apparently they need two full legs each to function properly.

Most of us would prefer two full legs, so who can blame innocent chromosomes?

Here's a video that explains things. But, beware: the video, which states that bone marrow transplant is the base line treatment modality, doesn't seem to take in Vidaza treatments.

What To Do? What To Do?

Treatment with a drug called Vidaza.

Vidaza is relatively new on the market, and seems to be fairly effective. It's administered in cycles: two injections daily for a week, followed by three weeks with no treatment. Initial treatment is four such cycles (i.e., four months worth).

Vidaza is an "anti-metabolite." It corrects problems with the maturation and growth of young blood cells in the bone marrow, alters the way the cell turns genes on and off, and also interferes with the production of new RNA and DNA.

Treatments, apparently, can go on for a cycle or two. For years. Or, forever.

Along the way, platelet transfusions are possible. If it gets worse, regular blood transfusions or even a bone marrow transplant are possible.

But, that's a worst-case scenario.

Right now, we're focused on the best-case scenario.