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Old Sat Aug 11, 2012, 06:47 PM
PattiDean PattiDean is offline
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Join Date: Jul 2012
Location: Clearwater, FL
Posts: 171
Hi Bene, thank you for your reply. I don't know if Dean is 5q-mutted, these are the things that the doctor never tells us. I am finding out now there is so much that Dean and I do not know, and many things the doctor is not telling us either.

Almost two months ago the doctor told us Dean had MDS - RAEB-t, with 17% blasts. Now after two cycles of Dacogen he tells us Dean is in remission. His counts have improved dramatically over the last week, it just seems like too much too soon. The doctor seems to be basing Dean's remission on the blood counts, and the fact that he is saying that he wants to stop the Dacogen and just give Dean Revlimid, and yet not give us any explanation, concerns me. He is also saying that Dean no longer has any blasts. Can he know that without a BMB?

Greg, I understand what you were trying to say about the drugs for MDS and other cancers, you gave me an excellent explanation on how they work, something our doctor has never told us. I greatly appreciate the time you spent writing about the differences for me and helping me understand how Dacogen works.

Thank you Linda for your reply, I know that you and Al are dealing with so much right now. I have copies of all of Dean's blood work and keep a record of his transfusions, but I have never received a copy of his BMB that was done in the hospital by his doctor. Hopefully that will change this week when we see the doctor and I know now there are a lot of questions I have to ask regarding the results of this BMB.

Thank you to each and everyone of you for being there for Dean and I and for all your support and suggestions. You have helped more than you could possibly know. Thank you!
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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