Treatment for AL Amyloidosis with severe heart failure

Posted by tomholder @tomholder, Oct 29 9:20pm

CAEL 101 seems to be the only effective treatment for reduction of amyloid fibrils of the heart in Al Amyloidosis. I’m reading conflicting information about eligibility. My wife’s hematologist says she’s ineligible because she’s had prior treatment for it with Dara Cy-bor-d (5 months), yet I’m reading online stories that people with previous treatment have received it. What’s the deal?!

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Hi @tomholder, welcome. There are several discussions about AL Amyloidosis that you may wish to review:
– Recently diagnosed with AL Amyloidosis: Any advice?
– Diagnosed with AL Amyloidosis. What can I expect?
See all

It's not uncommon for amyloidosis to affect the heart. From Mayo Clinic: " If your heart is affected, you may need to take blood thinners to reduce the risk of clots. You may also need medications to control your heart rate. Drugs that increase urination can reduce the strain on your heart and kidneys."

I found this current trial recruiting participants at al 3 Mayo Clinic locations as well as other medical facilities.
– A Study to Evaluate the Efficacy and Safety of CAEL-101 in Patients With Mayo Stage IIIa AL Amyloidosis

Regarding eligibility and treatment it looks like "Planned first-line treatment for plasma cell dyscrasia, cyclophosphamide-bortezomib-dexamethasone (CyBorD)-based regimen administered as SoC" is included.

If you would like to find out more about eligibility criteria, you can contact Mayo Clinic Cancer Center Clinical Trials Referral Office at (855) 776-0015

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