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Originally Posted by katgio50
Thank you Steve. We were aware of course that Vidaza makes the counts go down but it has been over 40 days since the first cycle began and the counts are going the wrong direction. We are kind of numb right now . My husband has an amazing outlook and will continue to fight this insidious disease.
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Hi katgio50 - Trust me when I tell you I can imagine what you are going through as my mom is also suffering with the extremely low blood counts post her first round of Vidaza. My mom's case is different from your husbands and you read it my other posts. However the one thing in common is that my mom's blood counts are at a scary low even after 28 days of Vidaza with platelets of 4000 (which mean they are as good as zero), ANC below 400, and Hb around 8.5 (only because of multiple RBC transfusions). My mom cannot also accept platelet transfusions as he body rejects it. The doctor that is treating her has gone ahead and started the second round of Vidaza on Day 29 and we are carefully monitoring her situation for fever, bleeding, etc. The hope and prayer is that after the second round she will get some relief.
While you have not provided any specifics of your husband's count and also given that everyone's body responds differently to any treatment, I am not suggesting that you should ignore the low blood counts. However I would ask that you discuss and consider moving forward with the second round without any further delay (40 days is quite some time when compared to the recommended 28 day cycle). You will need to be fully aware and extremely careful with the risks of injections and/or bleeding but with the right doctor and support it may be worth the try just given how limited options exist for this dreadful condition.
The extremely low and sometimes unexplainable risk and fall in blood counts during the first two or three cycles of Vidaza is quite typical and your husband is not alone. Please stay strong and good luck. Feel free to send me a private message if you feel to do so.