Systemic AL Amyloidosis Diagnosis at 36

Posted by westwoodft @westwoodft, 10 hours ago

I'm 36 y/o and just diagnosed with systemic AL amyloidosis. My bone marrow is creating the light chains (~5% clonal population, 3% plasma cells on bone marrow differential), but it seems to only have deposited in my pulmonary tract so far (trachea and lower lungs). Lamda FLC 11.27 mg/dl and kappa/lambda ratio 0.06. No monoclonal peak on urine or serum. All other organ markers are clear. Preparing to undergo dara-cybord regime sometime in August. Really at a complete loss right now being relatively young and healthy. A lot of unknowns ahead. Looking to connect with anyone with similar experiences. I know dara-cybord has only been the standard for 5 years, but really looking for some reassurance that this can produce a long lasting remission to allow me to live a normal life. Appreciate your thoughts and hope you all are doing well yourselves. <3

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