Friday, October 19, 2012

June 12, 2010 - Support Group Meeting

I attended another local amyloidosis support group meeting on Saturday, June 12. Mom was unable to attend because she was not yet back from a cruise to Bermuda. I volunteered to pick up an attendee at Love Field who was flying in from San Antonio for the meeting. He was a former Air Force chaplain and Presbyterian minister, and a published author. He was a neat guy to talk to, and he seemed to be doing well.

The guest speaker was Dr. B from Mayo Clinic in Rochester. There were a total of 25 people at this meeting, compared to 17 at the meeting in March. Here are the notes I took on each of the 12 patients at this meeting. (SCT = Stem Cell Transplant)

  1. Initial symptom was high levels of protein in his urine. Undergoing chemo treatment for AL amyloidosis. Currently on dialysis. Kidney function is around 15%.
  2. SCT in 2004 (The person I picked up at the airport.)
  3. Cardiac involvement. Also has multiple myeloma.
  4. SCT in March of 2008
  5. Familial amyloidosis. Swollen legs, trouble walking.
  6. Cardiac involvement. Being treated with chemo.
  7. Localized in lungs
  8. Initial symptom was getting tired while shopping at the mall. Diagnosed at Mayo in 2008, then SCT.
  9. Familial, evaluated at Boston. Part of a drug trial.
  10. Recently diagnosed. Just started chemo.
  11. Localized in throat, diagnosed at Mayo. 17 surgeries to remove it. Always comes back.
  12. Diagnosed in 2008. Kidneys affected. SCT in June of 2008. On peritoneal dialysis now. Listed for kidney transplant.

So there were two people at this meeting who were on dialysis due to amyloidosis affecting their kidneys. When it was my turn to tell Mom's story, I was happy to say: A) Mom isn't here because she was on a cruise to Bermuda, and B) We are going to Boston next week for an evaluation.

My only other notes for this meeting were the following:

"Test for suitability for treatment"  --  I'm not sure what the context of that was. I'm guessing it had something to do with how to decide which course of treatment (Stem Cell Transplant vs. chemotherapy) is best for treating primary (AL) amyloidosis in each individual patient.

"Familial  --  Liver transplant"  --  I suppose I wrote that down since so much of the discussion at these meetings focuses on the treatment of AL amyloidosis, whereas the treatment of familial amyloidosis is totally different. In fact, one thing Dr. B said stuck in my mind while he was discussing familial. He mentioned that they frequently see patients at Mayo who have been diagnosed by their local doctors as having AL amyloidosis and then started on chemotherapy. These chemotherapy treatments, when given to someone with familial amyloidosis, actually do harm and cause peripheral neuropathy, among other things.

All in all it was another informative meeting where I got to hear more patient stories, all of which indicated that amyloidosis can take a long time to diagnose and there is no consistent pattern of symptoms.

Next up: The Boston evaluation

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