In February 2019, I was diagnosed with AL amyloidosis. My annual mammogram results came back showing a lot of calcification. A biopsy was done on both breasts. The doctor said “Great news no cancer”. But when I read the report for myself, it said that I had amyloid tumors in both breasts with lymphoplasmacytic infiltrates. I went to my PCP in Dallas, TX and she didn’t have any idea how to treat it. From there, I went to my rheumatologist, and he said that it wasn’t good to have amyloid, however, he needed to research how to treat it. I looked up a hematologist in the Dallas area and went to her. She had said that the pathologist stated that it was AL amyloidosis in the breast, but my doctors said that this is a rare disease and that there is no need to treat it.
At this point, I began following the Amyloidosis Foundation Page and asked for doctors who treat amyloidosis. I was referred to MD Anderson in Houston, TX, and started seeing Dr. Gregory Kaufman, a lymphoma/myeloma doctor on September 16, 2019.
As of February 24, 2020, he started a 3-month “trial” treatment on me. However, I kept complaining about my stomach hurting, so an EGD & Colonoscopy were ordered. The results showed amyloidosis in the stomach and colon as well. Now, I have three confirmed locations with amyloid. I began chemotherapy treatments with Rituximab, Cytoxan, and Dexamethasone to target the lymphoplasmacytic lymphoma. I recently had a CT and it showed thickening and loops in my colon. The doctors say that it may be from amyloidosis, but he’s going to stop treatment for about 3 months to see if it will get better on its own. This is very concerning to me because he is telling me that I have a very unique case.
I have scheduled for a 2nd opinion with a physician from UT Southwestern in Dallas, TX. More to come!