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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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Christina Bokusky | @BokuskyChri | Jun 8, 2015
In reply to @darcytannehill "If you have had a SCT and achieved complete clinical remission and then after several years..." + (show)
@darcytannehill

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?

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A second SCT is a viable option, especially if the first SCT led to prolonged remission. Typically however, the impact of a second SCT is not as durable as the first. Candidacy for another SCT would have to be assessed. The pros and cons of the other non-SCT options, including bortezomib- based chemo regimens, particularly if not used previously, should be discussed with the physician in detail.

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Christina Bokusky | @BokuskyChri | Jun 8, 2015
In reply to @jlockhart "I have al cardiac with deletion 17p? How does deletion p17 gene get addressed?" + (show)
@jlockhart

I have al cardiac with deletion 17p? How does deletion p17 gene get addressed?

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Del 17 p is considered a high risk feature in myeloma. Only nine patients with AL amyloidosis (2%) were identified with a deletion (17p) in a recent retrospective study of 401 patients published by the Mayo Clinic Group. The nine patients with deletion 17p had the highest level of bone marrow plasma cell infiltration. No significant difference in overall survival for the high-risk FISH features could be documented, but the study was limited by very small numbers of high risk abnormalities. In the absence of hard data in AL amyloidosis, I would err on the side of considering del 17p as a high-risk feature. Usually bortezomib-based therapies are considered more effective in patients with del 17p.

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Christina Bokusky | @BokuskyChri | Jun 8, 2015
In reply to @jerrybecker "2nd question...great seminar so far..wonderful job....+ 15 months SCT...severe neuropathy here NEOD?? how to get it...seems..." + (show)
@jerrybecker

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

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Phase 2 is still putting patients on the waiting list.

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Christina Bokusky | @BokuskyChri | Jun 8, 2015
In reply to @cowboycoffee "I have been diagnosed with Lychen Amlyoidosis. No one here knows anything about it. So this..." + (show)
@cowboycoffee

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?

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As far as lichen amyloidosis, we could assist, but it isn’t something we have as a specialty clinic or strong web presence on.

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Philippe goffart | @philippe | Jun 8, 2015
In reply to @cowboycoffee "I have been diagnosed with Lychen Amlyoidosis. No one here knows anything about it. So this..." + (show)
@cowboycoffee

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?

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hello, my wife have amyloidosis in the heart, you take egcg and that disrupt fibrills amyloids . Com on to facebook amyloidosis international, i give you the good information. 8 months ago doctors want transplant the heart from my wife from 32 years, im living in belgium and give information. We dont change heart, take egcg and other natural things, that work really.<br />
Best regards <br />
Philippe<br />
<br />
Envoyé de mon iPad

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