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Old Sat Aug 11, 2012, 01:09 PM
PattiDean PattiDean is offline
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Join Date: Jul 2012
Location: Clearwater, FL
Posts: 171
Wow, thank you Greg. I learned more from your post than I have learned from our doctor in six weeks!

The doctor did use the term remission on Friday because Dean's counts were so good, and then said he didn't think Dean had to continue the Dacogen treatment. Both Dean and I had an uneasy feeling when the doctor told us that. Dean's blood counts began improving even before he began the second cycle of Dacogen, which has us confused.

We are still keeping the appointment with this oncologist on Tuesday, but both Dean and I no longer feel comfortable with this doctor and have decided to seek a second opinion. Hopefully we will find a doctor that will be more open and willing to discuss and answer our questions and concerns.

We knew that Dacogen wasn't chemo from what we have read on these forums, but didn't think about that when the doctor told us Dean was in remission.

Also, the doctor never did take the time to tell us how Dacogen works. From your explanation, it sounds like Dean should continue on the Dacogen, along with the Revlimid, which is what the doctor was going to do from the beginning. Now that Dean's counts have improved, the doctor is saying he wants to discontinue the Dacogen, and just have Dean on the Revlimid. Hasn't told us why though, that is something that should be discussed.

Thank you so very much Greg for taking the time to explain chemo and Dacogen and all your help whenever we have a concern.
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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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