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Oct 16, 2018 · Help with Histiocytes in Blood Cancers & Disorders

Has anyone talked with you about Erdheim-Chester disease/Rosai Dorfman? Dr. Ron Go is the expert at Mayo.

Mar 26, 2018 · Medicare in Blood Cancers & Disorders

This is disappointing. Our population is aging and those that are very sick go yo mayo and may depend upon Medicare. Sad.

Jul 15, 2017 · ECD in Blood Cancers & Disorders

ECD is a histeocytic neoplasm. Basically, one with this cancer overproduce wbc/lymphocytes/macrophages and tumors are formed in major organs. I currently have kidney involvement. i was diagnosed at Mayo in April of this year. i see Dr Ron Go. i orginally had cardiac involvement but have responded to zelboraf. About 50% have the BRAF mutation. i orginally had a major sore throat and then 3 days later a UTI and felt something was wrong. The docs in my home town area could not figure it out so i traveled to Mayo. This disease has varied presentation and less than 1000 people in the world have been diagnosed.

Jul 13, 2017 · ECD in Blood Cancers & Disorders

Anyone out there diagnosed with Erdheim Chester disease?