Type of Amyloid:
Al Amyloidosis with MM
Phoenix AZ/ Cedars Sinai in Los Angeles
Shortly after moving to Phoenix, Arizona in January of 1997 (age 54) I began feeling tired (anemia) getting bad headaches with nausea (lost weight) and had pain and burning in my hands and arms (carpal tunnel syndrome). It took the whole year to finally get a diagnosis of Multiple Myeloma in December of 97. I had surgery on both hands for the carpal tunnel in January and February of 98 and tissue samples from that surgery diagnosed the AL Amyloidosis. The Amyloid didnít show up in a kidney biopsy or fat aspirate test, only in the wrist tissue sample. I started on monthly Aredia (bisphosphonate for bone strengthening) right after the Myeloma diagnosis but didnít start chemotherapy until August of 98 when my kidney function started going down hill from the Amyloid. I was down to 34% kidney function at the start of treatment. I had three months of chemotherapy (IV cytoxen, dex, biaxon, mesna and zofren). This put me in remission and I went on alternate day prednisone (50mg) as maintenance for two months while I debated the Autologous Stem Cell Transplant being suggested. I had the transplant in March of 99 at Cedars Sinai in Los Angeles. This stopped the Amyloid production and my kidney function came up to 50% where it stays today. I am still in complete remission from the Myeloma and the Amyloidosis as of this date (June 2011). The Aredia was stopped because it can be hard on the kidneys and I showed no signs of bone involvement from the Myeloma. I feel strongly about the quality of life issue so I have chosen not to do any maintenance therapy except supplements and non-invasive alternatives including massage and mind-body techniques.