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Anyone w/ both AL Amyloidosis & Acquired Von Willebrand Syndrome?
My husband, 55, was recently diagnosed with both AL light chain (lambda) amyloidosis and acquired von Willebrand Syndrome (AvWS). He is finishing cycle 5 of the DaraCyborD chemotherapy regimen, but has not had a complete response. (He is somewhere between Partial Response and Very Good Partial Response.) We are now meeting with the transplant team to discuss stem cell transplant. We live near a major medical hub, yet, no here has treated someone who has BOTH of these rare conditions. In fact, I can find very little information on these conditions together at all, especially when it comes to stem cell transplant. I'm wondering if there is anyone out there who also has both that would be willing to share experiences.
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Hi @marykatr, your post led me to do a bit of internet searching. I learned that Acquired von Willebrand syndrome almost always occurs in association with an underlying disorder.
- Association of Acquired Von Willebrand Syndrome with Primary (AL) Amyloidosis https://ashpublications.org/blood/article/106/11/4078/122735/Association-of-Acquired-Von-Willebrand-Syndrome
Was your husband first diagnosed with AL Amyloidosis and then von Willebrand syndrome or were they discovered at the same time? What symptoms led to his diagnosis?
yes, what you learned is correct. The AvWS was diagnosed first, and when the usual suspects were ruled out (lupus, myeloma, etc), I knew it had to be Amyloidosis (based on the rule-outs & symptoms). It took me another year, and an ER trip by my husband, to get the medical establishment to look for it. And boy did they find it once they looked - heart, liver, gallbladder, entire GI tract....will post symptoms soon. Busy work day today. Mary