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Old Sun Mar 20, 2011, 02:39 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
John,

Yes, kgtuck's treatment schedule is typical. Here is one of the studies that showed it's an effective schedule. (It makes you wonder how the doctors figure these things out in the first place!)

There are two ways to know that treatment is needed. The first is when you suffer from the symptoms of MDS: the effects of low blood counts or becoming transfusion dependent. The second is when you have bad results from blood and marrow tests, such as defective chromosomes, chromosomes that are changing, high counts of blast cells (immature blood cells), or very high risk of infection (neutropenia). Even if you feel OK, the tests you take are in case you come to a point where the doctors recommend that you begin treatment.

If you search these forums you'll find a number of reports from patients about their experiences while taking Dacogen, including the timing of cycles and how they responded. "Your mileage may vary."

The goal of these treatments is to prevent the worsening or transformation of MDS. In the best cases (a small percentage) it eliminates MDS. In the worst cases, patients don't get off the drug because they don't live long enough. For everyone in between, the doctors (and patients) have to make the decisions about how long to wait for a positive response or how long the improvements outweigh the risks or side effects. The MDS drugs aren't addictive. The way doctors see it, the signs of success are medical improvements, including higher blood counts and fewer infections and transfusions. The way patients see it, it's an improved quality of life however they define it.

Yes, Medicare covers all but the experimental or off-label treatments for MDS, but it's subject to all the usual complications of Medicare, like annual deductibles, and the changes from the Health Care and Education Reconciliation Act of 2010. If you get into a clinical trial, your expenses are paid for as part of the trial. You'll find some discussions about Medicare in these forums, this one for example.
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