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Pretty Funky, I realize this is a scary time, but even in the short term, this is manageable with transfusions while other treatment options are considered. You are in shock, a lot is going on right now but this site is a great resource & support group.
I also am in the Seattle area and there are wonderful hematologists here who can help you. If your insurance allows you to go to Seattle Cancer Care Alliance (SCCA), call them ASAP & make an appt. They are part of the UW medical Center & Fred Hutch system and have specialists who know how to treat this, can confirm your diagnosis, discuss treatment options... They also have an amazing support system with a resource center, social workers... Their # is: 855-557-0550.
Please don't give up hope. As others have said this can be very treatable. For example, I just celebrated the 1 year anniversary of my transplant & my bone marrow is now normal. Hang in there.
Best,
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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