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In this webinar, cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provide an overview of amyloidosis, including tests and evaluations, treatment options and how to manage your symptoms. A question and answer session followed the presentation.
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Thank you. My Dad had AL cardiac amyloid and is almost 77 and is on maintenance chemo. <br />
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Would the NEOD001 trial be an option?<br />
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I'm meeting with his local doctor today too (who consults with Dr Buadi) and will bring it up. <br />
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Anonymous: Relative to previous question about solid organ transplant and familial amyloidosis, concern is about wild type continued deposit and not recommended use of diflunisal because of kidney concerns.
Yes, wild type TTR can deposit on pre-existing deposits of amyloid related to TTR mutation. If someone has abnormal kidney function, diflunisal can make it worse.
Thank you. So in this case would there be treatment available? <br />
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Is there any research on treating AL Amyloidosus with velcade only without the accompanying use of steroids?
Just letting everybody know - answers are still coming your way. Thanks for your patience!
I can't find any doctor near me (Delaware) to treat my amyloidosis lichen type. Johns Hopkins doctor saw me & since I don't have the primary type, he could not treat me. Suggestions?
Have you tried University of Pennsylvania Hospital? They run clinical trials for some types of amyloidosis. We are also from Delaware, and my husband is on a trial at U Penn for Wild Type Cardiac Amyloidosis. If you haven't tried anyone there, perhaps Dr. Brian Drachman, the cardiologist who runs that clinical trial, will know if they treat your type.<br />
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PCD<br />
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So Pauline and Mtownsend from Delaware....Delaware here also...getting treated at Chrisitiana for AL...living in Bear....send me private email would be interested in your stories if you would like...jebbecaz@yahoo.com<br />
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The mature and updated results of CAN2007, a phase 1/2 study of once- and twice-weekly single-agent bortezomib in relapsed AL amyloidosis by Donna Reece et al. were published in the journal Blood in 2014. Seventy patients were treated and single-agent bortezomib produced durable hematologic responses and promising long-term overall survival. This trial was registered at http://www.clinicaltrials.gov as #NCT00298766.
Abnormal plasma cell infiltration in the bone marrow can be patchy, and if the sample obtained is not representative of the true marrow picture, or has a low proportion of clonal plasma cells, the detection of plasma cells can be missed. Unfortunately, this degree of an increase in the involved free light chain with resultant abnormal K/L ratio is typically suggestive of progressive disease. It may just be early biochemical progression, but organ function would have to be assessed as well to find out if the increase in the free light chain has led to organ damage. Please discuss carefully with your physician about the various options that are available.