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