Hi all!
I just wanted to say that my mother's hematologist no longer wants to treat her. She wants her to see Dr. Young's team in John Hopkin's in the next 4-6 months (not urgent). She says my mother is a very complicated case, and doesn't feel comfortable treating her as her main physician for aplastic anemia. She will still continue to see her, though, to read blood tests, prescribe transfusions, etc.
My mother's neutrophils were 1200 yesterday, and her blood jumped up to 9.3 and then went back down to 8.4. Her platelets are still bad (never rise on their own).
The hematologist said that her blood does rise but it always drops. She says that that is the problem. She went on to say to that the horse-atg seems to be working, but when will her blood actually stay up without the need for blood transfusions? She says her age is the main factor here. She says it's still a waiting game, as it can take up to two years for the bone marrow to heal in older people. The platelets will be the last thing to come up, usually, and that could be a while yet (maybe 12 months or so post-atg). Hard to say. She has known people where it took 1-2 years for atg to really kick in and be transfusion-free (especially people over 60).
Her overall bloodwork was good, but the doctor went on to tell me that she had some abnormal red blood cells in her last bone marrow biopsy, which doesn't at all change her diagnosis. She said it is not anything to worry about now as her flow cytometry was perfectly normal. She said people with aplastic anemia can have these in small numbers. The cause can be several things, some of which are unknown. For it to be overlap with MDS/sideroblasts, there would need to be flow cytometry changes, which there is not. She said iron overload can cause this. But in the future, we have to make sure that my mother doesn't develop sideroblastic anemia on top of aplastic anemia. But the doctor has me worried about these abnormal red blood cells.
For the record, she doesn't think my mother will need the rabbit, but she will leave everything up to Dr. Young's team at John Hopkin's. She said he uses non-standard medicines for complicated cases of aplastic anemia. She is not comfortable giving my mother anything but cyclosporine and Promacta for now (she gave her horse-ATG 9 months ago).
The doctor left the room, saying that she just doesn't make predictions about aplastic anemia. She said you could have normal hemoglobin in four months with no more need of transfusions, and never relapse. She just doesn't know. But her neutrophils staying up for over 2 months plus sporadic rises in blood shows that the horse-atg is "doing something", she said.
Health and happiness to everyone!
