Thank you for your reply and compassion, Colleen. I’ve reviewed the links/discussions you attached. A lot of good information—especially about the new mutation. I just need to figure out how to present it to the hematologist here until I can find an mpn specialist.
As for following up with the Clinic for my records review—unfortunately the phone number that the scheduling assistant provided me is actually a fax number (in addition to the hematology clinic’s fax). So…I have no way to follow up. Do I just call the appointment line again? I’m trying to get in to the Phoenix location.
As a side note: I found it interesting that when the appointment scheduler was running through the matrix for polycythemia, she was asking about chemotherapy and bone marrow transplant. When I said no to all of the above is when she said the hematology clinic would need to review my records. Are those actual treatment options for non-cancer disorders?
Thank you again.