Tuesday, October 2, 2012

February 2010 - What to do, where to go?

Mom's next doctor appointment regarding amyloidosis would be with the oncologist/hematologist who treated her when she had breast cancer about 10 years ago. Supposedly this doctor (Dr. C) had treated amyloidosis patients in his practice, so we felt good about going to see him. She scheduled an appointment for March 9, 2010, so I had plenty of time to search the internet to see what I could find out regarding types of amyloidosis, causes, symptoms, treatments, etc. Here are the main things I think I knew about amyloidosis as of February of 2010:

  • AL (primary) amyloidosis is by far the most commonly diagnosed form of amyloidosis. The cause of AL amyloidosis is unknown.
  • Treatments for AL amyloidosis include a stem cell transplant or chemotherapy.
  • AA amyloidosis is secondary to some other condition or disease in the body.
  • Localized amyloidosis means it is localized to a specific part of the body. Again, cause unknown.
  • Familial amyloidosis is a hereditary form of amyloidosis. There was no mention of familial amyloidosis in the biopsy report, so no need to worry about that.

It became quite clear that it could be difficult to find a doctor with any experience with amyloidosis, much less someone who could be considered a specialist. Eventually I found two very important web sites. They were the Amyloidosis Foundation at: 


and Amyloidosis Support Groups at:


I started reading through the patient stories on both of these web sites, and lo and behold there was a story by a woman (GL) in the DFW area, who mentioned a doctor at Baylor Hospital that had treated her husband. I wrote to her, told her my mom had recently been diagnosed, and thanked her for giving us some hope that we might be able to find someone in this area with amyloidosis experience. She did write back and tell me she would definitely recommend Dr. B at Baylor. Sadly her husband had passed away suddenly in May of 2009 due to a rare side effect of amyloidosis, but he had lived a normal life with amyloidosis for 8 years.

So the input rate of information about amyloidosis is starting to pick up as we head into March, and I'm starting to make contact with others who are dealing with the same thing. Hold on tight . . .

No comments:

Post a Comment