What is the current protocol for al Amyloidosis?

Posted by suebridges123 @suebridges123, Jul 16 5:51pm

Diagnosed 3 years ago with Al Amyloidosis. On faspro and dex. Numbers were stalled for a year but suddenly are climbing. I feel like I'm doing treatments for a money grab at the clinic. I feel like I'm being over looked .

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Lori, Volunteer Mentor | @loribmt | Jul 17 9:16am

Hi @suebridges123. From my understanding, Al Amyloidosis is caused by a bone marrow disorder. In AL patients, some plasma cells in the bone marrow produce an abnormal antibody (immunoglobulin) protein which can collect in various organs in the body, causing damage to the tissue. Even though you’re on a treatment plan, there can be changes taking place which may require a review of your condition and a reevaluation of the current medication.
What has your hematologist oncologist discussed with you regarding your climbing blood numbers? If you don’t mind sharing, what organs are involved with your Al Amyloidosis?

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