Lymphoma and CAR T-cell therapy: Gay Lynn’s Story | BMT Infonet – BMT Infonet |
Fletcher, North Carolina
Diffuse Large B-Cell Lymphoma
CAR T-cell therapy 2020
Many thanks to Duke University and the American Society for Transplantation and Cellular Therapy for helping us share Gay Lynn’s story.
While 2020 was a tough year for most of us, for Gay Lynn Fox it looked especially dismal. When 2020 began, this devoted mom, former teacher and beloved friend had already spent five years fighting Diffuse Large B-cell Lymphoma (DLBCL).
Back in 2015, while moving her older son into college, she discovered what at first seemed like an innocuous lump on the back of her leg. After a quick diagnosis of lymphoma and six cycles of chemotherapy, Gay Lynn fell out of remission. She decided to travel from her home, in the Blue Ridge Mountains of North Carolina, to MD Anderson Cancer Center, in Houston, for a stem cell transplant.
The nine grueling weeks she spent in Houston were lightened by the devoted care of her husband, and by visits from family and friends alike, including her two boys who were both students at Mississippi State University at the time. Gay Lynn recalls, “They drove themselves out together to see me.” She was also buoyed by an outpouring of loving messages from far and wide.
“All those things that might seem little to the person giving them are huge to the patient,” Gay Lynn says. “Even just getting a text or an email gives you a line of hope…. a breath of fresh air, like someone opened a window.” After treatment in Houston, Gay Lynn returned home full of hope.
Then in early 2020, the bottom dropped out. Her one-year post-transplant PET scan revealed a recurrence of the lymphoma just as, as Gay Lynn describes, “This strange virus was emerging.” Given the danger of traveling during the COVID-19 outbreak, Gay Lynn elected to continue treatment closer to home at Duke Medical Center in Durham, NC.
At Duke, doctors believed her best, and perhaps final, treatment option was CAR T-cell therapy. To fully understand CAR T-cell therapy, it helps to understand what T-cells are and what they do. T-cells are an integral part of the immune system. They provide protection from infection and help fight cancer. Gay Lynn compares CAR T-cell therapy to a stem cell transplant thus: “Instead of taking out your stem cells, they take out your T-cells. Then, in the laboratory, your T-cells are engineered to fight the cancer when they are returned to your body.” Click here to learn more about CAR T-cell therapy.
For Gay Lynn, CAR T-cell therapy differed from her stem cell transplant in two key ways. First, her immune system was not as seriously suppressed and, thus, she worried less about opportunistic infections. Second, her doctors said she had a “complete response” to CAR T-cell therapy. Gay Lynn describes her thrill in hearing this term, which she understood to mean she had no cancer left.
CAR T-cell therapy does have some serious side effects, including the risk of neurological complications. Gay Lynn’s medical team at Duke, led by Dr. Matt McKinney, prepared her for a potentially frightening lapse in memory and self-identification that could last several days.
Indeed, while playing cards with her husband in her hospital room about a week after the CAR T-cell infusion, Gay Lynn found herself thinking, “I’ve got to stop, I’m getting tired.” Three days later, she “came to.” As Gay Lynn recalls, “For my husband it was very upsetting, the woman he knew was not there. Still, they told him I’d come back, and I did (with no memory of being gone!).”
Gay Lynn’s medical team partly measured her neurological recovery by asking her to write out simple sentences, such as “I am Gay Lynn Fox. I’m at Duke University Hospital. Today is…” For a time, Gay Lynn was unable to write fluidly, and, as she recalls, “Days 17 – 19 after CAR T-cell therapy were completely missing!” This was especially frustrating for her.
“I’m a teacher! It bothered me that I couldn’t write. So I pushed myself and practiced during the day. The nurses were like, ‘We’ve never seen anybody do this!’” Eventually, as Gay Lynn recalls, “My neurological issues totally resolved, as promised.”
Once her memory was restored, Gay Lynn was released for ongoing out-patient care, just as the pandemic was cresting. As she recalls, “The staff at Duke went the extra mile to keep their patients safe.” Duke arranged for oncology-transplant nurses to act as home health nurses, drawing labs and examining patients right at the Residence Inn in Durham.
When Gay Lynn was finally able to return to her own home in the beautiful Blue Ridge Mountains, shortly before Christmas, a surprise awaited her and her husband. “My friends had put lights on our deck, bows on our doors!” Gay Lynn sums up the joy of that moment: “For us, 2020 was the year I beat cancer with CAR-T therapy. It’s strange to say, but 2020 was a very good year for the Fox family.”
Among the many gifts that sustained her through 2020 and beyond, Gay Lynn counts her faith and the extraordinary generosity of her church family. “They have been foundational to our peace and endurance,” she says.
Since 2020, the Fox family happiness has continued to grow. Their younger son will be married this summer and their older son is enjoying a new career with the Justice Department. As for Gay Lynn, when asked how she feels at the beginning of 2023, her answer says it all, “Today I met friends for lunch, ran errands and I am full of energy. I am so thankful.”
A leading center of clinical care, medical education, and biomedical research, Duke University Hospital is consistently ranked among the nation’s premier health care institutions. Patients directly benefit from Duke’s leadership in cancer research, thanks to a “bench to bedside” approach that focuses on making promising new therapies quickly available to those who need them most. Under the leadership of Nelson Chao, MD, Duke has earned national and global recognition for its innovations in blood and marrow transplantation.
The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education and clinical practice to deliver the best, comprehensive patient care.
Photo Credit: Will Thomas Ashville, NC forgemountainphoto.com
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