[Suzanne]

My mother has had 7 cycles of Vidaza with no response. I initially felt when they wanted to stop on the 5th cycle they didn't give Vidaza a fair chance, I am starting to think they might have been right. My moms counts continue to be low. She takes neupogen injections and receives 2 units of blood about every 2 weeks. The past 3 weeks she has received 1 unit, 2 units and another 2 units today. Her ferritin levels are 2066 and she is on Exjade, but it is like shoveling sand against the tide. Although they did up the dosage of Exjade. The highest I have every seen her hemoglobin and that is after a transfusion is 10. They transfuse her as soon as it goes to 8.5. Her neutrophils are about .4 and the WBC are about 1 without neupogen. Platelets fluctuate between 42 - 90. She is tired all the time and very short of breath. I am finding that you really have to be your own advocate in this battle, because the doctors have so many patients and are overwhelmed. My mother tells me all the time she just wants to get well and is a lamb being led to the slaughter because she does whatever they want just to be better. That makes me the primary voice in her disease. So, I guess what I want to know is at this point in the game what should I be saying and doing? The Ferritin is making me nervous as well as the instability in her counts. Should I be mentioning Dacogen? What other options are there?