I am the first myeloma patient to have achieved a sustained durable remission using CAR T-cell therapy. Now, I’m making it my life’s mission to help further research efforts in multiple myeloma, especially in the area of immunotherapy.
I have always prided myself on being healthy and fit, so when I started experiencing a chronic cough, difficulty breathing, and pain in my ribs and back, I thought they were the inevitable symptoms of a severe cold. At 42 and the mother of three children, it was inconceivable to me that I could have an incurable, life-threatening disease. But after medication to treat my symptoms proved unsuccessful, blood tests, followed by a bone marrow biopsy, determined that I had advanced-stage multiple myeloma.
My oncologist recommended aggressive treatment, including high-dose chemotherapy, to reduce the amount of myeloma cells and two consecutive autologous stem cell transplants to get me to a cure or at least a durable remission. The treatment and recovery would mean spending 6 months in the hospital away from my husband and children, which was completely unacceptable to me. I knew I had to find other options.
Searching for Quality of Life
I traveled from my home in Florida to consult with myeloma experts at Dana-Farber Cancer Institute in Boston, who recommended several rounds of a combination regimen of lenalidomide (Revlimid), bortezomib (Velcade), and dexamethasone (RVD) to get the myeloma under enough control to harvest my stem cells for an autologous stem cell transplant. But after 9 months of RVD and high doses of cyclophosphamide failed to control my tumor growth, I was admitted into the hospital to receive a high-dose regimen of dexamethasone, cyclophosphamide, etoposide, and cisplatin (DCEP), which sufficiently reduced the amount of myeloma cells in my body to get me to the transplant.
Unfortunately, a few weeks after the procedure, the cancer was again progressing, and I was whipsawing in and out of the hospital for blood transfusions and other supportive care. Although the treatments were buying me time, they were not giving me the quality of life or the amount of uninterrupted time with my family I had hoped for, so I was desperate for a solution that would change the trajectory of my cancer.
Using the Immune System
When I was first diagnosed with myeloma in 2008, I had asked my oncologists whether immunotherapy could be an effective option for me and was told that the science wasn’t advanced enough in the treatment of multiple myeloma and probably would not be in my lifetime. Five years later, after becoming refractory to every therapy I was given, I was desperate. The treatments and the advancing myeloma had left me bedridden and in excruciating pain, and I knew I was probably weeks away from death.
Despite my critical state, I wasn’t ready to give up and couldn’t shake the feeling that immunotherapy might be a viable alternative for me. When I saw information about a clinical trial being launched at the Perelman School of Medicine at the University of Pennsylvania investigating chimeric antigen receptor (CAR) T-cell therapy for patients with advanced myeloma,1 I thought it could be the lifeline I was hoping for. I was right.
The procedure for the experimental therapy, which used my own immune cells engineered with an anti-CD19 CAR and then infused back into me, was grueling. It included high-dose melphalan and a second autologous stem cell transplant.
Within weeks of receiving the CAR-modified autologous T cells, I attained a minimal residual disease–negative stringent complete response, and that is where I remain 15 months later. I am the first myeloma patient to have achieved a sustained durable remission using CAR T-cell therapy and am honored to be among the patient pioneers advancing immunotherapy for this still incurable cancer.
Building a Lasting Legacy
I know I wouldn’t be alive if I had not had such a dedicated team of oncologists from multiple cancer centers that refused to give up and worked together to coordinate my care. Now, I’m making it my life’s mission to help further research efforts in multiple myeloma, especially in the area of immunotherapy.
I’ve been given another chance at life, and for however long that chance lasts, I plan to use the time constructively to ensure that each patient with myeloma benefits from precision medicine, to raise funding for research, and to make whatever contribution I can to finding a cure for this disease.
The fact that I now have a chronic, manageable disease should inspire both patients and researchers never to give up the quest for more effective therapies and, ultimately, a cure. I’m convinced that my positive attitude, which kept me pursuing an effective therapy even when the odds were against finding one, is helping me to survive multiple myeloma. I wish to pass on this intrepid spirit and sense of determination to other cancer survivors, so they, too, can, hopefully, beat the odds. ■
1. Garfall AL, Maus MV, Lacey SF, et al: Safety and efficacy of anti-CD19 chimeric antigen receptor (CAR)-modified autologous T cells (CTL019) in advanced multiple myeloma. 2015 ASCO Annual Meeting. Abstract 8517. Presented May 29, 2015.
Lori Alf is Director of National Air Cargo and a board member of Acetylon Pharmaceuticals. She lives in Boca Raton, Florida.
ASCO Answers: Managing the Cost of Cancer Care explains the various costs associated with cancer treatment, including health-care coverage through the Affordable Care Act. It also provides a list of financial resources available to help offset expenses related to care and tips for organizing...