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Hello. I am so sorry to hear about your FIL. This disease is very confusing and there are some amazing resources on this board. It seems like Greg has answered a lot of your important questions.
First and foremost, are you seeing a doctor that is an MDS specialist? There are many doctors that "treat" MDS, but few that are specialists. What part of the country are you in? There are "Centers of Excellence" that specifically treat MDS and my first bit of advice would be to immediately seek out one of them. As in, start looking NOW...and get an appointment this week. This board can help you find one.
I find it interesting that one doctor is saying AML and the other isn't. They don't classify MDS as AML until the blast count is 20%.
Usually they have very good results with Revlimid with patients with 5q deletion. Did they say exactly why he couldn't go on it, other than the HEP C?
Please let us know how we can help...
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