My AL Story
I was diagnosed with Carpal Tunnel Syndrome and had CTS surgery on both my left and right wrists in late 2017. I had my annual physical in January 2018, Blood Testing (TSH) found hypothyroidism (Hashimoto’s) and also found an M-Spike (High Protein Level) and I became extremely fatigued over the next 6-8 months.
I then started having what felt like heart attack symptoms, went to the Emergency room and they thought I was having a heart attack. My blood pressure was relatively normal but my Heart Rate was very high (110-120 BPM). I then went to Cleveland Clinic Cardiology & Hematology Oncologist and they performed multiple tests including C-Scans and Cardiac MRI which showed my heart was very stiff due to a buildup of fibrils on my heart.
They took biopsies from under my tongue and found that I had AL amyloidosis deposits. I had red blotches (raccoon-like) around my eyes (typical for some patients of Amyloidosis) Then, they performed a Bone Marrow Biopsy and confirmed AL Amyloidosis and Multiple Myeloma in my Bone Marrow.
I immediately started CyBorD Chemotherapy for 6 Cycles, which knocked out most of the disease, then I had a high dose of Chemo (Melphalan)and then an Autologous Stem Cell Transplant on July 18, 2019, which eradicated the rest of the cancer and amyloidosis. Then we had to redo my childhood immunizations and started Maintenance Immunotherapy (2 years of Ninlaro, then RevDaraD) to ensure the amyloids and Multiple Myeloma cells are stopped before they develop.
My fatigue is gone, I feel pretty great most days. Monthly blood testing, Darzalex Faspro (Daratumumab Immunotherapy), and daily EXERCISE are helping to keep me healthy, strong, and enjoying Quality of Life with my beautiful wife, two sons, and four grandchildren.
Thanks be to God, to my Doctors: Dr. B, Cleveland Clinic, Henry Ford, and Karmanos-Detroit.