[stillhopeful]

Thanks. My advice for anyone starting vidaza is to start taking Mugard before the first treatment. It’s a liquid that coats the mouth and throat to stop oral mucositis from happening. Horrible canker sores and very painful. It is a common side effect yet no one told us this. We had to inquire after it got so bad that my mother was hospitalized for 10 days. She’s still struggling with it and still can’t eat much.
3rd round of vidaza scheduled in a week. Hope she’s strong enough. Her platelets still drop after each transfusion and WBC are still low, but others seem to show slowl improvements.

[stillhopeful]

Hi Jean,
My mother was diagnosed with MDS in September. All her blood levels are very low. Platelets were 8000 when first hospitalized and still will drop that low between transfusions sometimes. No rhyme or reason. Sometimes they can drop 20,000 or more in 2 days and other times they drop over 5 days. She now goes to cancer center 3 times per week. Her hemoglobin and hemocrit are also quite low. Her ANC is at zero.
They still say she is in the low risk class. I don’t quite get that. She started Vidaza last month and it’s not helping yet. Hopeful that it will in time.

[Author]

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