I am curious to know the effectiveness of Vidaza as well. My mother was diagnosed Aug 2009 with MDS RCMD and doctor had her on a wait and see until Dec 2012. My mother is 80 yrs old and never told family until about a year ago and she knew very little other than she had an ammune disorder and was seeing a blood doctor. When she said he told her in December to start treatment or die she opted to start treatment. I became fully involved at this point questioning doctors, getting copies of all her tests and that is when I found out her diagnosis and how long ago she was diagnosed.
She has been on Vidaza for 5 months and blood counts really haven't changed that much WBC 2.65 to 3.51 RBC 4.11 to 3.0 Absolute Neutrophils from .18 to . 42 HCT from 38.4 to 30.0 HGB 11.5 to 9.4 Last month they thought had progressed to AML but BMB showed no. This month he said amazing you are not getting sick treatment is up to you. She opted for Vidaza shots for 5 days and nothing more for 6 weeks. I asked if he checked BCL2L10 gene as I understand that is the only way to know if Vidaza is working as blood counts can vary do to foods and exercise. So how does one truly know if Vidaza is working? What should we be watching?
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