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Could this be Amyloidosis?

Blood Cancers & Disorders | Last Active: Jan 10 12:11pm | Replies (21)

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Profile picture for countrygirlusa @countrygirlusa

I would advise anyone who is diagnosed or suspects they may have AL Amyloidosis to get to a "Center of Excellence" as this is a rare disease that most doctors know little about. I went to Mayo Clinic- Rochester as they have a team of doctors from various specialties that work together to treat this disease. After my diagnosis was confirmed at Mayo, they advised my local hematologist the chemo protocol to follow. For me, it was 2 cycles (8 weeks) of treatment, and then a return to Rochester for a stem cell transplant. I would suggest joining the private FB page "Amyloidosis Support Groups(AL-Light Chain- Primary)" as there is a wealth of knowledge shared by followers of this page. The Amyloidosis Foundation is another great source of information. https://amyloidosis.org/al/ Please be aware that many "Dr. Google" searches will give you outdated information. There have been wonderful advancements in the treatment of this insidious disease in the last 20 years. Good Luck and hope this information is helpful.

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Replies to "I would advise anyone who is diagnosed or suspects they may have AL Amyloidosis to get..."

@countrygirlusa
How long did it take to get an appointment at a center of excellence. I am lucky on the east coast , I have a few options between UPenn, Sloan or even Columbia all about an 60-90 minutes away