Video Q&A about Amyloidosis – What Patients Need to Know

Thu, Jun 4, 2015
12:00pm to 1:00pm ET

Description

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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@bgardner

NEOD001 treatment is protein specific. How far behind will trials/ development of the drug for TTR-WILD BE?

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The development of monoclonal antibodies for TTR has been reported, but I am not aware of any clinical trials at this time. Hopefully this might be an option, but will probably be at least a few years down the road.

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@danaholmes

Are all MGUS, Smoldering Myeloma and Myeloma patients tested for Amyloidosis at outset/initial evaluation? or must a patient present overt symptoms before the suspicion to test arises. Can it be tested for before overt symptoms present? Should it be tested for in this setting (MGUS, SMM, MM) before overt symptoms present and organ damage has already occurred?

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Typically, amyloid is tested only when there is a suspicion which means the patient has some symptoms that suggest it is more than MGUS or myeloma. Can it be tested, yes but the chances of finding amyloid is low when there is no symptom to guide where to do the biopsy.

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@sarahtuel

For the trial options, can they be tried no matter your age?

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There are age limits for almost all trials. However, they usually include the most common ages for the type of amyloid. For example: the TTR cardiac trials often include patients up to age 90.

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@ramune

I was diagnosed with laryngeal AL amyloidosis. I started getting carpal tunnel. My blood tests showed it is local. So why do I have carpal tunnel? What tests should be done to determine if is local?

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If you have surgery for the carpel tunnel, make sure they test it for amyloid. Otherwise, the testing is the same for AL amyloidosis, serum free light chain, serum protein electrophoresis, urine protein, serum creatinine, troponin and NTproBNP.

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@renron

A scant amount of AAPOA IV was found in my kidney. Is there a way to see just how much is in my body and is this considered a primary type or a hereditary. Would there be a different treatment regarding.

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This is one of the newest type of amyloid described. it is not considered primary amyloidosis with is the old name for AL amyloidosis. Not enough cases have been described to know if it is hereditary. Currently, there is no way to determine the amount of amyloid in a person’ body in this country.

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@sarahtuel

For the trial options, can they be tried no matter your age?

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Thank you. My Dad had AL cardiac amyloid and is almost 77 and is on maintenance chemo.

Would the NEOD001 trial be an option?

I’m meeting with his local doctor today too (who consults with Dr Buadi) and will bring it up.

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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.

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@renron

A scant amount of AAPOA IV was found in my kidney. Is there a way to see just how much is in my body and is this considered a primary type or a hereditary. Would there be a different treatment regarding.

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Thank you. So in this case would there be treatment available?

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Is there any research on treating AL Amyloidosus with velcade only without the accompanying use of steroids?

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Just letting everybody know – answers are still coming your way. Thanks for your patience!

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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?

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@mtownsend51

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?

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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.

PCD

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@mtownsend51

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?

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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

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@mvpdda

Is there any research on treating AL Amyloidosus with velcade only without the accompanying use of steroids?

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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.

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@chaigo

I received a SCT in January of 2013 and was in CR until now. Recently my lambda was 28.4 mg/dL and was confirmed with a second blood test. Kappa was 2.84 mg/dL and ratio was .10. A bone marrow biopsy was done which showed no activity and was normal. Is it possible that I have relapsed and it not be in the bone marrow? What does this mean?

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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.

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