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Old Thu Mar 17, 2011, 09:25 AM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
John,

It's good news that the "wait and watch" strategy has been working for you. You may be one of the many people who live just fine with lower than normal counts, and having stable or slightly improved counts is a good sign. Your doctor may want to do periodic bone marrow biopsies to determine if your marrow is changing at the cellular and genetic level.

You are correct that EPO is used to increase red blood cell production, not to treat the underlying cause.

Yes, decitabine or azacitidine could delay progress of the disease. Their mechanism isn't completely understood but they affect your genes and when they work its by inhibiting the reproduction of damaged cells. They're called demethylating agents. Ironically, they can have a side effect of reducing blood counts. The question your doctor will be considering is whether you are sufficiently symptom-free to avoid or delay treatment. "Wait and watch" leaves you with the risk that the MDS will worsen but without any side effects. Without a sign of progression your doctor may not think these drugs are worth the risks and possible side effects. I hope your doctor will not only make a recommendation but also discuss the tradeoffs with you.

The doctors understand the latest research a lot better than we patients and caregivers do, but a well-informed patient is going to be much more comfortable with the treatment choices made and can participate in the decision-making.
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