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Old Wed Jan 4, 2017, 04:10 PM
JordanN JordanN is offline
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Join Date: Nov 2014
Location: California
Posts: 59
Hi, Fordad,

I'm very sorry to hear of your dad's diagnosis. I think one of the major frustrations with this disease is how differently it presents and responds to treatment in different people and how differently each doctor chooses to treat each patient's condition. While there are some standard protocols for treatment, it does seem that different doctors make different decisions for what appear to the layman unclear reasons. I would suggest always asking the doctor why he/she feels certain treatment options are optimal.

My dad was also diagnosed with MD RAEB II in March of 2014. He was 80 yrs old at the time and had no co-comorbidities. Like your dad, he had 4 cycles of Vidaza but ended up with neutropenic fever during the fourth cycle. The doctor gave him a six week break and did a repeat BMB which showed no change from his original results (my dad's WBC, RBC, and platelets never showed any response to the Vidaza either, and he required transfusions every couple of weeks or more throughout his illness). So, the doctor continued Vidaza since he felt it might be keeping the MDS at bay even though things weren't improving. My dad's counts would drop extremely low after each treatment and it quickly began to take longer and longer for any recovery at all of blood values even with transfusions so the doctor decreased his dosage from 7 days to 5 days to 4 days with 6 weeks or more between treatments. He was also told that stem cell transplant and other chemotherapies where not an option.

He had several BMB's during this time, and he never showed any change at all (marrow blasts were 18-19% the entire time). After about 16 months, his MDS transformed to AML and his treatment was stopped. However, while Vidaza never worked (and we were always hoping it would start working) as it is intended to, it probably did at least slow down the progression of the disease. My dad's doctor felt that dacogen had a less effective rate of success compared to Vidaza and felt that it would not benefit my dad. He also felt in his experience with MDS patients that though Vidaza can take a long time to work the vast majority of his patients had at least a partial positive response within the first 4 to 6 months.

I hope this information helps, and I wish you all the best with your dad's treatment. The course of the disease is very frustrating and confusing, and I hope you can find some answers to help with your decision making and to bring everyone a little peace in a time of great stress.
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