[Sara]

Choijk, just remember that none of these “natural therapies” will stall or cure a cancer such as MDS. If they could, there would never have been a need for FDA approved treatments. Patti, I hate to hear that your mom has transformed, because MDS can have a survival of 3–8 years with treatment, but AML survival is less than a year. The most important thing in MDS is to get the patient on one of the MDS therapies ASAP, and keep them on it no matter what. That is your best hope of prolonging life with this type of leukemia.

[Sara]

I am intimately familiar with both Vidaza and Dacogen. People, there are a few things you need to know and remember about these drugs:

1. They take at least 5 months to really start working. I know, 5 months can seem like an eternity. But hang in there…getting prolonged therapy is your very best chance at stabilization or remission with these drugs.

2. Dosing guidelines on a pharma company website are just that…GUIDELINES. Listen to your doctor..he has a reason for dosing you or your relative the way he has. There are all kinds of dosing regimens being tested, because the dosing in the package insert was developed in the late 90’s or early 2000’s, and much has been learned since then. Raeb-T or AML may require more-frequent or higer dosing. Also, the line between diagnosing Raeb-T or AML is fuzzy, so that further complicates dosing. Whatever the company website says about dosing is old news…docs have the latest studies where the national experts are trying different dosing regimens in order to get better responses.

3. BOTH of these drugs are available through IV dosing. Dac is only approved for being given in a hospital, although it is often given outpatient. Check your insurance to see if they’ll cover it outpatient..sometimes they do, sometimes they don’t.

4. Again..these drugs take a LONG time to work…at least 5 or 6 months. And in the first 3 months, the patient will experience siginificant myelosuppression. STAY on the therapy…the response rates are high if the patient stays on the drug. I just can’t stress this enough.

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