Quote:
Originally Posted by mola-tecta
Shroob, I am so sorry that the treatment course has made a turn for the worse like this. What a hassle!
I understand the need to place cancer patients first. But I also feel that leaves patients with other diseases like Aplastic Anemia kind of hung out to dry. Sometimes I get the same sort of sense from my mother's hematologist office.
Hopefully you can find some answers soon. I would try giving Dr. Young's office a call, from what I remember Matthew42 had gotten a better response from them this way.
I also found that the Cleveland Clinic will do a Virtual Second Opinion: https://my.clevelandclinic.org/depar...s#overview-tab
It's a bit pricey, but it also looks like if you call them or have your doctor refer you to their office, they have the option for virtual visits as well. Dr. Maciejewski is supposed to be another of the world's leading experts in AA. |
Yes, you can call Dr. Young's office and have them consult with your current hematologist. He and his team wouldn't see my mother, but they told my mother's doctor what the next course of treatment should be if things don't improve (Campath). Also, he said that my mother did have some response to immuno-suppressant therapy, but that she should still wait a few more months before going on to Campath. Sometimes, a complete response to ATG can take well over a year, particularly in older people. He also said that my mother's condition is highly immune-mediated because of her PNH clone. In other words, it is safe to say that she very much has autoimmune aplastic anemia. That's all the info we got from him. He reviewed her blood tests and bone marrow biopsies.
I would very much recommend the Cleveland Clinic, too.