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.

 

Would you like to:

Request An Appointment

Learn More About Amyloidosis

Location

Online

dx AL Oct 2013
ASCT Dec 5 , 2013
Neuropathy and proteinuria main effects ( I also have bilateral Brachial plexus neuropathy)
Kidneys still functioning ok
Blood numbers and chem numbers in acceptable ranges
FLC went to normal with normal ratio 6 months after ASCT

Last blood work Lambda was up out of normal very slightly 28.2 (26.3 is high end of normal)..
Kappa fine at 14.3
Ratio fine at .51
No other sign of disease progression
Question:
Not worried at slight bump yet...but when would I need to be concerned about higher FLC...was around 100 I believe at diagnosis

REPLY

A scant amount of AAPOA IV was found in my kidney. Is there a way to see just how much is in my body and is this considered a primary type or a hereditary. Would there be a different treatment regarding.

REPLY

was this to start - nevermind. CDT. Thanks.

REPLY

Thought this was to start at noon on 6/4. Problem with technology?

REPLY
@patmcgreevy

Thought this was to start at noon on 6/4. Problem with technology?

Jump to this post

It starts at noon Central Time. 30 more minutes.

REPLY

What does the latest research show on treating amyloidosis with velcade only without the accompanying use of steroids?

REPLY

Assuming you're healthy enough for a SCT, do you perform them on patients who are in CR from CYBORD already? If not, how long do I need to do maintenance chemo? I'm so sick from the chemo side effects?

REPLY

To determine extent of cardiac involvement, and the likelihood a SCT can be performed, is a cardiac MRI the best test? Echo with strain? If my GFR is 37, should I be worried about contrast?

REPLY

Is there current research about familial amyloidosis post heart and liver transplant?

REPLY

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.

REPLY
Please sign in or register to post a reply.