Dallas Support Group Meeting: November 8, 2014

Today's post will be about the Dallas amyloidosis support group meeting Mom and I attended on November 8, 2014. Attendance at this meeting totaled 32 people including the two guest speakers. I counted 17 patients and 13 caregivers/family members/friends. The breakdown by type was seven AL amyloidosis patients, five familial, four localized, and one person who was not typed yet but AA amyloidosis (secondary) was suspected. This was the first meeting for five of the patients, one of whom had ATTR and received a heart transplant just a month ago and seemed to be doing very well. In fact, a recurring theme for this meeting was that several patients are doing much better than they were a year or two ago, and people are surviving longer with amyloidosis. For instance, one of the attendees was an 11-year survivor (since diagnosis) who had a stem cell transplant in 2004. That kind of survival with AL amyloidosis used to be very rare.

The guest speakers were Dr. Zonder from Karmanos Cancer Institute in Detroit and Dr. K from The Binding Site, which is a company that develops blood tests used in the diagnosis and monitoring of AL amyloidosis (and many other similar diseases). Dr. K's presentation went over some of the terminology used in discussing AL amyloidosis, such as heavy chains, light chains, lambda and kappa, and how those are all related, what is important in testing as the disease is monitored, etc. Good info for AL patients, but not really applicable for AFib.

Dr. Zonder's presentation and discussion with patients included a lot of information about emerging therapies being developed and tested for all types of amyloidosis and how they worked. As I understand it, treatments can be divided into three groups:

1. Treatments that reduce or eliminate the production of the misfolded proteins. This would include stem cell transplants and chemotherapy for AL amyloidosis patients. In the case of fibrinogen amyloidosis, that is what a liver transplant does since the liver produces the mutated fibrinogen proteins.
2. Treatments that prevent the formation of amyloid deposits.
3. Treatments that dissolve amyloid deposits once they are formed so they can be eliminated by the body's normal processes. Examples of this would be CPHPC and doxycycline, both of which are in early clinical trials for all types of amyloidosis.

Dr. Zonder also said a few kind words to the group about my blog, since he became aware of it last year and has read some of it. That was nice to hear and it did make my head swell up just a little bit. We got to chat some after the meeting was over, too. I recently discovered that he also gave the blog a mention on his Twitter post later that day. So I guess I'll keep blogging (not that I was thinking about stopping any time soon.)

In the next post we may get to answer the question: What do they serve in the hospital on Thanksgiving Day?

=====Monthly Blog Status Update===== 

As of October 31, 2014:

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