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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Kevin,
We have face to face support meetings ..right column following link
http://www.amyloidosissupport.org/ and there are doctors at these meetings
For sharing, we have an online group http://www.AmyloidOnLine.com and are on Facebook
Now with this wonderful forum Mayo has provided we are nicely covered for sure.

I keep getting emails but when you hit view here it just brings you back to the main page. Where are the comments? Thank you! Great info by the way. Thank you!

It was a very interesting Webinar with great information. I hope you do this in a regular basis because this help with our living with amyloidosis and to get the latest information from renown specialist. Thank you very much.

@renron

I keep getting emails but when you hit view here it just brings you back to the main page. Where are the comments? Thank you! Great info by the way. Thank you!

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to the right..

Muriel Finkel
Amyloidosis Support Groups Inc.
http://www.AmyloidosisSupport.org
Toll Free Hot/Help 866-404-7539
http://www.AmyloidosisOnLine.com – over 1620
http://www.FamilialOnLine.com – over 240
Member NORD http://www.rarediseases.org
http://www.AmyloidAware.com Booklet

Video

@gaetanche

It was a very interesting Webinar with great information. I hope you do this in a regular basis because this help with our living with amyloidosis and to get the latest information from renown specialist. Thank you very much.

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Thanks for the input. It may take us a little while to get resources but hope to do these on a regular basis to update patients about treatment options.

Appreciate this presentation. Like others I think it might be helpful in the future to have separate webinars for AL and TTR. Have you any information on a new drug for TTR: SOM0226, under development in Spain by a company called SOMBiotech? They claim that it has potential to clear existing amyloid deposits from the heart. The decision tree for TTR treatment options was of particular interest. I am enrolled in the Tafamidis trial, but of the options currently available Doxy/URSO seems most probable to slow progression. What is your opinion? Has any research focused on why WT TTR primarily effects men? It seems that might somehow shed light on the causes of this condition. Thanks to all involved.

is there a way to stop the discussions from coming to your private email.. I just deleted 53 this time. Tks.

@patmcgreevy

is there a way to stop the discussions from coming to your private email.. I just deleted 53 this time. Tks.

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There is a link at the bottom of the email

@eejoiner

Appreciate this presentation. Like others I think it might be helpful in the future to have separate webinars for AL and TTR. Have you any information on a new drug for TTR: SOM0226, under development in Spain by a company called SOMBiotech? They claim that it has potential to clear existing amyloid deposits from the heart. The decision tree for TTR treatment options was of particular interest. I am enrolled in the Tafamidis trial, but of the options currently available Doxy/URSO seems most probable to slow progression. What is your opinion? Has any research focused on why WT TTR primarily effects men? It seems that might somehow shed light on the causes of this condition. Thanks to all involved.

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Yes, for future we will consider separate webinars. I am not aware of the spanish drug, will check into it. We really don’t know which treatment option will be best and that’s why we need the clinical trials. Many examples of clinicians and scientists being surprised one way or the other about results. The male predominance is fascinating, although we do see some women with WT ATTR. It may be that women do get the disease and it “looks different” so we don’t recognize it. There may be hormonal influences. This is an area of investigation and I agree that more research into gender differences may help us understand the cause and help develop treatment options.

@muriel

thanks to Drs. Grogan, Kapoor and Leung..do this weekly and we will be oh so happy…

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🙂 We try to keep you happy!

Thank you all for taking the time to put on this webinar. There is no doubt in my mind that more frequent such webinars would be very welcome. Many of us who live far from Mayo or other Centers of Excellence do not get a chance to see and interact with Amyloidosis specialists, and it is so comforting to see and hear docs share current information, so hard to come by. Most docs we interact with in our home areas are either not at all familiar with or are not up to date on Amyloidosis research and treatment. Please do consider splitting into AL and TTR.

Based on your experience once a Pt. has achieved a CR with chemo, when do you discontinue the chemo
Do you do any additional maintenance chemo rounds and how oftenis blood work done?

In response to Eric and others from Dr. Grogan:
“I’m going to keep working on the technology for the webinar, Google hangouts. I’ve been interested in using this forum for a virtual support group for awhile, to compliment your groups. I’ll be out of town at your 8/1 meeting, otherwise we could try it from there, basically giving people,the ability to video in, so that we could see them and they could participate ” face to face”.

We did the answers to most of the questions from today but the intern responsible for posting left early! They will get posted tomorrow”

Do remember that Dr. Grogan will be at our TTR/Familial support meeting October 21 in Chicago along with several great amyloidologists. .

@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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This is not a systemic form of amyloid in that it does not involve other organs. We will check with our dermatologists regarding treatment options.

@sandyk

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?

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Soft tissue involvement should respond to treatment like other organs however, it could take time, sometimes months to years.

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