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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@rickslack

Not sure who is monitoring comments but an observation, All look good and slides and audio coming through perfectly

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Wonderful to hear! We very much appreciate this feedback.

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?

@rlane

Where will the responses to the questions not answered during the webinar be posted? How can we access them?

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They will be posted here, along with the archived version of the presentation.

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?

If you have had a SCT and achieved complete clinical remission and then after several years have elevated light chains, do you ever suggest a second SCT? Or, is other treatment preferred? If you do suggest second SCT process, what are the decision points? If not SCT, what other treatment is your preference?

I have been diagnosed with Lychen Amlyoidosis. No one here knows anything about it. So this is all I know also. My skin looks like alligator skin and is very itchy. The dermatologist gave me Soriatne but nothing has changed. Where do I go, What do I do next?

2nd question…great seminar so far..wonderful job….+ 15 months SCT…severe neuropathy here NEOD?? how to get it…seems very limited availability…told trials full from Univesrity of Penn

I have been diagnosed with AL amyloid myopathy. Major organs are not affected at this time. just severe muscle weakness. On chemo, will muscle strength return?

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

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?

Thank you, good presentation,

Thank you!

Thank you all so much for your presentation. You commented on both my questions. Please do these presentations more often if possible!

thank you..great job!

Thank you for doing this – it is a great service. However, it would be helpful to have a Familial TTR specific event at some time. As so much of the AL is not relevant to the TTR patients.

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