Hello all, sorry 1 for diagnosis and 2 delay in diagnosis for many. It is extremely rare and only recognized since 1985 by dr loughran at Penn state. There IS treatment with immunosuppressants like methotrexate so get to an EXPERT. I am retired MD in NY area and local oncologist said it is so unusual, he sent me into NY Presbyterian Hosp. For bone marrow and evaluation. I believe Dr Thomas Loughran can give you names of MD and is reachable by 800-2431455. Otherwise your best bet is a leukemia expert. Best, Tina. User name buffalo