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Amyloidosis – What Patients Need to Know

Thu. Jun 4, 2015 at 12:00 pm CST

During this  webinar hosted by Mayo Clinic, cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provided 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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Tags: webinar, Amyloidosis

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mtownsend51

mtownsend51 wrote:

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?

Posted Sat, Jun 6 at 10:01am CST

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




Posted Sun, Jun 7 at 8:30am CST

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

Posted Fri, Jun 5 at 3:17pm CST

mvpdda

Mark Pettine wrote:

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

Posted Fri, Jun 5 at 9:07am CST

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.

Posted Mon, Jun 8 at 1:27pm CST

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 [...] View full text  

Posted Fri, Jun 5 at 7:48am CST

muriel

Muriel wrote:

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. [...] View full text  

Posted Fri, Jun 5 at 6:34am CST

mick

Carol Grivett wrote:

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?

Posted Thu, Jun 4 at 7:24pm CST

dougwaugh

Doug Waugh wrote:

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 [...] View full text  

Posted Thu, Jun 4 at 6:34pm CST

patmcgreevy

reilly wrote:

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

Posted Thu, Jun 4 at 3:15pm CST

There is a link at the bottom of the email

Posted Thu, Jun 4 at 3:45pm CST

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 [...] View full text  

Posted Thu, Jun 4 at 2:55pm CST

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.

Posted Thu, Jun 4 at 3:51pm CST

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.

Posted Thu, Jun 4 at 2:42pm CST

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.

Posted Thu, Jun 4 at 2:53pm CST

Anonymous wrote:

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!

Posted Thu, Jun 4 at 2:30pm CST

muriel

Muriel replied:

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

http://vimeo.com/3358025 Video


Posted Thu, Jun 4 at 2:48pm CST

muriel

Muriel wrote:

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 [...] View full text  

Posted Thu, Jun 4 at 2:30pm CST

Thanks to all who joined. To anonymous: we have a video specifically for wild-type TTR amyloid and will release that on the Mayo Clinic you tube channel soon. I notice that in the introduction I may have had a Freudian [...] View full text  

Posted Thu, Jun 4 at 1:54pm CST

cowboycoffee

Kevin wrote:

Where can you go to get some answers? Is there a forum for this disease?

Posted Thu, Jun 4 at 1:40pm CST

danaholmes

Dana wrote:

Thank you for providing this excellent resource. Hope for more in the very near future.

Posted Thu, Jun 4 at 1:21pm CST

amyloid60

amyloid60 wrote:

Excellent presentation.

Posted Thu, Jun 4 at 1:20pm CST

bgardner

bill gardner wrote:

Thank you doctors and Mayo Clinic Connect. Having visited Feb.,2014, just can't say enough good about the Mayo Clinic and its' staff.

Posted Thu, Jun 4 at 1:11pm CST

muriel

Muriel wrote:

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

Posted Thu, Jun 4 at 1:11pm CST

:) We try to keep you happy!

Posted Thu, Jun 4 at 3:54pm CST

tmousetis

tmousetis wrote:

At the end of the presentation you mentioned there are possible toxicity issues with long term use of Bortezomib. Could you explain? My concern is that for relapsed AL Amyloidosis post stem cell transplant Bortezomib or Bortezomib/Dex is one of [...] View full text  

Posted Thu, Jun 4 at 1:07pm CST

ccotten53

Clark Cotten wrote:

Thank You for the webinar.

Posted Thu, Jun 4 at 1:06pm CST