Thursday, June 6, 2013

Dallas Support Group Meeting: June 1, 2013

This post will have a quick update on Mom, a report on the most recent amyloidosis support group meeting in Dallas, and the monthly blog stats.

In the last update on Mom we were waiting for her doctor appointment regarding the bump on her abdomen that ruptured and started oozing while she was in Hawaii. On Tuesday, May 28, she saw Dr. D, who is in the same office as Dr. K. (Dr. K did the surgery for her peritoneal dialysis catheter, but he was on vacation that week.) Dr. D was amazed that the bump was gone because he said it was about the size of a golf ball at the time the CAT scan was done. He said the options at this stage are:

  1. Do nothing and hope it does not flare up again.
  2. Schedule surgery to remove the piece of surgical felt so it will not cause any more issues.
  3. Wait for it to flare up again, and have surgery if and when it does. That might actually help the surgeon locate it since he can just follow the bump.
Dr. D said he would talk to Dr. K about it and get back to Mom. She talked to Dr. D on June 5 and he said it was up to her if and when she wanted to have surgery, since there is no urgency to remove the surgical felt now. Given all the other stuff going on right now, Mom is just going to wait and see if it flares up again, then schedule surgery when that happens. Right now the oozing has stopped and the hole has more or less healed over.

Dallas Support Group Meeting

On Saturday, June 1, I attended the Amyloidosis Support Group Meeting in Dallas. Mom did not attend because she was in Austin. The medical guest was Dr. Reeder from Mayo Clinic in Arizona. (He explained that they no longer refer to it as Mayo Scottsdale since there is also a location in Phoenix. So it's Mayo Arizona now.)

I counted 32 attendees at this meeting, including Dr. Reeder. Half of the people were friends or family of someone with amyloidosis. The patients included eight with AL amyloidosis, three with localized, and four with familial (including me.) There were three or four patients I had not seen before. The woman whose husband died on February 11 was there. This was her first support group meeting since then, and although it was difficult for her to tell their story she did manage to get through it. She is still in a bit of shock, understandably so, and is in the process of sorting things out.

Two items from Dr. Reeder's presentation stood out for me. The first one was his discussion about the various methods of analyzing tissue to determine the type of amyloid deposits. I have seen various methods mentioned in the journal articles, but Dr. Reeder's presentation briefly went over each method and strongly implied that laser microdissection is the preferred method today. I won't go into laser microdissection now since I know it will be discussed in at least one article I will be reviewing later on.

The other noteworthy item from Dr. Reeder's presentation was his discussion of the effects of doxycycline on amyloid deposits. I discussed doxycycline in a blog post back in January. The short version of the story is that doxycycline is an antibiotic developed in the 1960s that researchers recently discovered may have some benefit in treating amyloidosis. Dr. Reeder talked about how researchers have given amyloidosis to mice and then given them doxycycline so they could analyze the amyloid tissue. He showed a couple of slides of amyloid fibrils as they gradually broke up after being exposed to doxycycline. Boston University is currently recruiting patients with all types of amyloidosis for a clinical trial, so hopefully the results in humans will mimic those in mice. Will doxycycline turn out to be a miracle drug that dissolves amyloid deposits so the body can get rid of them? Time will tell . . .

=====Monthly Blog Status Update=====

Total posts: 80 (5 in May)

Total pageviews: 3191 (1220 in April)

Email subscribers: 4

RSS subscribers: 2

Total number of countries that have viewed the blog: 57

13 new countries viewed the blog in May. That is a record number of new countries in one month.

Dominican Republic
South Africa
Viet Nam

No comments: