Well, I just contacted Dr. Young's team. They agreed to review her case. The nurse told me that it is no guarantee that his team will her see her, though. If not, there are a few doctors who were trained under Dr. Young who would (Dr. Borsky, etc.).
She went on to say that her neutrophils going up is a good sign (+1000 and staying up), but she couldn't give me anymore information over the phone. She also said that it can take 1-2 years to get off transfusions with horse-atg when you are my mother's age (69). Older people often have very, very slow recoveries on horse-atg. Some older patients can take +15 months to get off blood and platelets transfusions, which we were never told. Dr. Young has to look at all trends in blood, bone marrow biopsies and reticulocyte counts to know what is really going on. He can tell, she said, if he thinks things are going to work within the next 6 months or so. So, the nurse basically said it could still end up being a longer waiting game (several more months of waiting) until we really know what is going on.
After a few minutes of talking about her condition, she said that Dr. Young may not take her as a full-time patient if he believes that her current treatment will end up working. He may just give her current hematologist guidelines on new medicines or dose adjustments of current medicines. However, if he believes that her current treatment may not end up working, he will probably take her on as a full-time patient.
I have to have records sent to him in the next few days.
By the way, she made a big deal about my mother's reticulocyte count, which has only been checked one time by mother's hematologist (one time a few months ago). When I go with my mother, she never talks about this. It was within normal range (low end) a few months ago. She said if her count is within normal range, that is a good sign (like the neutrophils) that atg will eventually heal the marrow, but that is all she could tell me. She can't give much info over the phone.
My mother gets some rises in blood and then very steep falls (between 6-7 in hemoglobin). She goes up to 9 or so on her own (one time 10) and then falls down into transfusion territory. As far as her platelets are concerned, she has had no improvement (always under 20).
I wish you all the best
