Based on the notes I took at the meeting, there were a total of 17 people there including me and the doctor who was invited to talk to the group. There were seven amyloidosis patients and eight others who, like me, were family members of amyloidosis patients. The doctor (Dr. M) was from Baylor and spoke mainly about AL amyloidosis and his experience with treating it.
As we went around the room and people introduced themselves and talked about their initial symptoms, how they were diagnosed, what treatments they had, etc., I took short notes for each person. Here's what I wrote for each of the patients:
- SCT (stem cell transplant) and chemo, 2008
- Kidney transplant 2003, recent primary AL, age 67
- Primary with cardiac involvement, fatigue, chemo now, has been to Mayo
- Familial. Lost father, sister has it and isn't doing well, going to Boston, two adopted daughters
- Localized to throat, 17 throat surgeries
- Acute heart involvement. Long time to diagnose.
- Very localized to back of right calf.
So we had primary, localized and familial amyloidosis represented among those seven patients. The leader of the group (AW) had lost her husband in 2006 shortly after he was diagnosed with amyloidosis with cardiac involvement.
When I told the group where we were with Mom's diagnosis and how the kidney biopsy results couldn't say conclusively that it was primary amyloidosis, someone suggested that the kidney biopsy could be looked at by a Dr. B in Indiana. I also heard it mentioned several times the need to get to Boston or Mayo for proper diagnosis, as those are the two centers of excellence for amyloidosis. Lastly, I thought this was important enough to write down: "If diagnosed with Amy and multiple myeloma, don't treat the multiple myeloma."
After the meeting they had all the amyloidosis patients pose for a group photo. They wanted me to get in the picture as a stand-in for Mom, but I think I declined since I wasn't the patient. The leader of the group also gave me her phone number and told me to call her with any questions I had about treatments, insurance, centers of excellence, etc.
All in all it was a very good meeting and it was quite interesting listening to everyone's stories about how difficult it was to get properly diagnosed, since so many of symptoms of amyloidosis typically are caused by conditions other than amyloidosis.
So now we're waiting on the results of the bone marrow biopsy and the next appointment with Dr. C . . .