Allyn had an x-ray to evaluate why she was having back pain while playing her favorite sport; tennis. Our family’s life changed dramatically and forever when lytic bone lesions were seen on the x-ray with a diagnosis of multiple myeloma.
On Allyn’s 45th birthday, I told her the horrible news. In consultation with Dr. Kanti Rai at Long Island Jewish we arranged travel to Little Rock, Arkansas for treatment. In 1997 the standard treatment for multiple myeloma had not changed much since I was a medical student in the early 1970’s. Fifty percent of patients were alive after three years of treatment. The clinicians and researchers at the University of Arkansas lead by Dr. Bart Barlogie, were dedicated to dramatically changing the treatment of multiple myeloma with the goal of curing what was a uniformly fatal disease.
Twenty-one years later after 3 autologous stem cell transplants, two experimental vaccines, over forty bone marrow biopsies, multiple high dose potentially lethal chemotherapies, a study patient in virtually every experimental drug protocol (including Thalidomide, Revlimid, Pomalidomide, Interferon, VDT-PACE, Velcade, Carfilzomib, Vorinostat, Nivolamab, Venetoclax, Nelfinovir, Rituxan, Mekinist, Daratumumab), high-dose steroids, spontaneous avulsion of the hip bone (iliac crest), fractures of virtually every rib, multiple fractures of the spine requiring gluing (kyphoplasty), surgeries for fractures of both hips, partial replacement of the right shoulder, C-DIFF infection, deep vein thromboses, at least twelve admissions for pneumonia/sepsis, and radiation for a basal cell carcinoma, Allyn finally succumbed to this horrible disease.
Allyn’s story is remarkable for her tenacity to survive, and her uncanny will to be positive every day to the very end no matter how devastating the treatment. Allyn’s glass was always more than half full.
Multiple myeloma is a malignant disease of the bone marrow which causes painful bone destruction and bone marrow failure. It is estimated that more than twenty thousand new cases of multiple myeloma occur in the United States every year. The disease may present as a suspicious routine blood test, kidney failure, unusual infections, bone pain with atypical fractures (pathologic fractures), or in other ways too numerous to describe. Fortunately, the treatment of multiple myeloma has dramatically improved over the last few decades with the introduction of new drugs developed as a result of emerging understanding of the cytogenetic abnormalities (genetics) and microenvironment of the bone marrow. With many new approved treatment options and novel agents and immunotherapy approaches in the research pipeline the prognosis for myeloma patients has improved with hope for cures in the future.
We hope that Allyn’s positive outlook, and infectious smile despite all her suffering, will be an inspiration to those facing the challenges of living with this difficult disease. Our family is committed to making a difference in improving the lives of myeloma patients.