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Old 05-10-2007, 11:03 AM
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RLBaxter is on a distinguished road
Myelofibrosis; End-Stage

Hello;
I am posting on behalf of my grandmother since she doesn't know how to use computers. After four months she was finally diagnosed with myelofibrosis and it is end-stage. Here CBC shows a 4.8 level and as our doctors keep telling us, she should be dead. We are Jehovah's Witnesses and don't accept blood transfusions. Currently here doctors have her on 60mg steroids and Thyamine (not sure if that is spelled right) an experimental treatment to block the signals that lead to the formation of the scar tissue. The same drug that caused birth defects. Our family would like to know what treatment options are available and if there may be any doctors in the Northern California area who can treat this. We have heard that there is a doctor at Sinai hospital near Los Angeles that can do a bloodless bone marrow transplant, but she is both too sick to travel down there and all three of her children have medical conditions such as diabetes and hepatitis so I'm not even sure they would be transplant candidates. Any information anyone can help with would be greatly appreciated. Thanks.
Rebecca Baxter
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