Educator Gets a Scary Lesson With Diagnosis of Multiple Myeloma

In May 2013, Lou Sears was a reading specialist at an elementary school in the Kansas City area. Working late one evening on a Mother's Day project for her students, Lou suddenly became overwhelmed with fatigue. She made it home, only to fall asleep immediately on the couch.

"When my husband came home, he immediately knew something was wrong," Lou recalled. "He took my temperature, and it was 103.4 degrees. He took me to the ER, and I was diagnosed with double pneumonia."

After five days in the hospital, Lou was discharged, and she was advised to follow up with her primary care doctor as the hospital team had detected elevated proteins in initial blood tests.

The subsequent testing revealed that Lou had multiple myeloma. As an educator, Lou takes learning seriously. So, once she received her diagnosis, one of her first goals was to learn about the disease and available treatments.

Today, Lou, who has since retired, is well versed in the challenge of treating and living with multiple myeloma. Her treatment, which began in June 2013 at the University of Kansas Cancer Center, included multiple cycles of chemotherapy and a stem cell transplant. While the transplant was initially successful, her multiple myeloma returned after three years. Thanks to a clinical trial that was available at her cancer center, Lou underwent chimeric antigen receptor T-cell (CAR-T) therapy, a personalized form of immunotherapy in which her own white blood cells were modified to recognize and destroy cancer cells.

“I soon found out that this would be a continuous cycle of relapse and remission since there is currently no cure for multiple myeloma,” Lou said. “It almost always returns, and patients like me rely upon the researchers to come up with new drugs that can sustain our lives.”

Lou’s own experience in six clinical trials, including three for CAR-T therapies, has made her keenly aware of the value of scientific research.

“My current treatment involves two bispecifics, which have put me back in remission,” Lou said, referring to the immunotherapy drugs teclistamab and daratumumab. “All treatments used to treat my disease were first tested in clinical trials. I was told when I was first diagnosed that I would have three to five years. I am still here today because of the continuing research for treatments that work.”

Lou — who with her husband, David, wrote Living With Hope, a book about her myeloma journey— has a simple message for lawmakers when it comes to medical research. Strong and sustained federal funding for such research is “imperative,” she said, adding, “It saves lives, including those in your own families.”