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Kat & Steve,
The first thing I would ask is where to find a more cooperative hematologist! A doctor who is not clear or specific isn't a team player, and is leaving you to wonder and worry rather than sharing the facts and letting you be on the team. Steve might be getting exactly the right care, but how would you know? No wonder it's frustrating for you.
There are a number of well-regarded hospitals with AML and MDS expertise in the Los Angeles area. Perhaps you can get a second opinion at one of them.
As things stand, you need more information about Steven's MDS. What subtype? What "blast count"? What are his scores on the prognostic scales? Why does the doctor expect the AML to return? I suggest that you collect copies of Steve's test results, from CBCs to bone marrow biopsies. Perhaps Steve's doctor will realize that you want to share in responsibility for his care and that you want to understand what is going on and what choices there are for dealing with it. It's sometimes hard to speak to a doctor frankly, but any good doctor will appreciate a patient (and spouse) who explain what they want to know, ask questions, and listen to the answers. If you don't say much, some doctors tend to lecture without knowing if you're "getting it".
You are correct about the drug. It's called azacitidine or 5-azacytidine or by its brand name, Vidaza.
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