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I Swear I Could Walk for Hours
In the fall of 2016, Linda DaCosta went to her local Northern Virginia hospital after experiencing shortness of breath. The 72-year-old underwent a battery of tests, including a heart biopsy, and was shocked by the diagnosis. Linda had multiple myeloma, a blood cancer affecting plasma cells, a type of white blood cells, but an even greater concern was a diagnosis of a disease called light chain (AL) amyloidosis, a condition in which proteins build up in the body’s organs, in this case Linda’s heart, ultimately causing organ failure.
“We see about 10-15 percent of multiple myeloma patients developing light chain amyloidosis,” said
Raymond Comenzo, MD
, Director of the John C. Davis Myeloma and Amyloid Program at Tufts Medical Center, and one of the world foremost experts on the disease. “The protein deposits are like concrete in the body’s organs. It’s really a terrible disease.”
Linda’s symptoms were severe—she could barely walk a few steps without becoming exhausted—and her prognosis was not good. Her disease was late stage and she needed treatment immediately. Her doctors recommended a phase 3 clinical trial out of Boston for an experimental monoclonal antibody for light chain amyloidosis. Linda connected with Dr. Comenzo at Tufts MC and, within days, she was up in Boston and enrolled in the trial.
“When she first began the trial, she was very, very sick and her prognosis was dire,” said Dr. Comenzo. “Without effective treatment, patients in her condition typically have a life expectancy of about three-to-six months.”
Linda began the weekly infusions of the trial drug, but her health was deteriorating. She was hospitalized four times, mostly due to issues with her weakened heart. In one instance, she was admitted to the ICU with blood pressure so low it was feared she was having a heart attack. Another time, she needed to have fluid drained from her lungs.
“Every one of those times, Dr. Comenzo was there for me,” said Linda. He was the first doctor who offered me his personal phone number, which I used a couple of times when I felt afraid. He even took time on Thanksgiving that year to call me at my hotel to check on me and reassure me.”
After several weeks of infusions, Linda was not seeing any improvement. With few options remaining, Dr. Comenzo made the decision to start her on a second monoclonal antibody called daratumumab, which had recently been approved to treat multiple myeloma, but had not been used for light chain amyloidosis. Daratumumab was like an elixir of life for Linda. Within a week, she showed significant improvement, as the drug drastically reduced the proteins causing her disease and dissolved damage done to her heart.
Within two months, Linda was able to return home, where she continued to improve every day. Today, six years later, Linda, now 78, is feeling better than she has in years. She has no lifestyle restrictions, and her heart has made an incredible recovery, to the point where she recently drove to Michigan and Florida and was able to take care of her late husband when he developed dementia in 2019. She takes a daily venetoclax pill for her multiple myeloma, receives a daratumumab infusion locally once per month to keep her light chain amyloidosis in check, and comes up to Boston to see Dr. Comenzo every six months.
“Where I once had to be wheel-chaired through hotel hallways, train stations and airports, today I can walk the biggest airport you can throw at me,” mused Linda. “I can walk as far as you need me to. I swear I could walk for hours.”
Dr. Comenzo says it is extremely rare for a patient of Linda’s age and disease progression to do as well as she has, and credits Linda’s optimism as a key factor.
“Throughout her time in Boston, Linda maintained a positive outlook, which is so critical to the recovery process,” said Dr. Comenzo. “Despite the obstacles in front of her, she was never depressed. She is a fighter.”
In January 2021, daratumumab was FDA-approved for the treatment of light chain amyloidosis. Dr. Comenzo and Tufts Medical Center have since patented the use of a two-monoclonal antibody cocktail for the treatment of patients with AL amyloidosis.
“Dr. Comenzo is not just a world-class expert in my disease, but also a world-class compassionate individual,” said Linda. “He has been helping patients like me for many years and I know there are countless others who feel this way about him, too. I wouldn’t be here today if not for him. He saved my life.”