[Matthew42]

Thank you, hopeful!

My mother's current hematologist is not going to lower her dosage below 150 mg a day until her blood or platelets start staying up (if they ever do).

Her last bone marrow biopsy was ok. There was increased cellularity with no abnormalities except for a few abnormal red blood cells (erthrocytes). She said that people with normal bone marrow can have these cells in small numbers. Higher iron levels in the blood or the Promacta could be causing them. She wasn't very concerned about it, and said that my mother would have to have these in high numbers for her to have something called refractory anemia (a kind of sub-MDS). She went on to say that aplastic anemia/refractory anemia diagnosis doesn't change much, unless the person has a serious relapse (the treatment will change). Who knows?

Now, I am concerned that her gains in neutrophils these past three months may get erased by her taking a lower dosage of cyclosporine. The only positive news her doctor gave her is that she "has one of the lines" after all this time (took 7 months). But we are 9 months and still getting tranfusion for blood and platelets. What I gathered from her was that if one lines comes up, the others will come up over time (no time frame can be given once one line comes up and stays up). It's just a waiting game. She said that that the three lines (blood, platelets and neutrophils) are all ultimately related in the disease. If none of the lines show real improvements after a year, the treatment is not likely to work. So, my mother has the neutrophils, but doesn't have the other two, although she has had real rises in blood and then dips real low (gets 2 units of blood a month now, as opposed to 3 or 4). Platelets don't seem to dip under 10, but are still very low. Her blood trends have really changed these past two months. She gets these big rises and then she drops real low (zigzags). Before, she would just have a steady decline after a transfusion.