As head of a family that includes seven children and 12 grandchildren, Susan Voigt says she is used to putting other people first. When it comes to trailblazing multiple myeloma treatment, however, she is proudly out in front.
A longtime Vermont resident, Voigt, 69, was the first person from her state to receive CAR T-cell therapy for multiple myeloma through the KarMMa clinical trial — an international study devised and led by Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC) in Boston. The innovative CAR T-cell procedure she underwent in July 2018 put her multiple myeloma into remission, where it remains.
Now, while leading an active life with her husband of 50 years, Dennis, and their still-growing family, Voigt is prouder than ever. Thanks to the efforts of her and other patients who participated in the KarMMa trial, the U.S. Food and Drug Administration (FDA) has now approved CAR T-cell therapy as a standard treatment for patients with relapsed/resistant myeloma.
“I did not want a battle with my cancer, I wanted to coexist with it. Now, thanks to CAR T-cell therapy, I can,” Voigt says. “It was a lifesaver for me.”
Breaks and breakthroughs
An energetic woman who ran a home daycare center and rarely got sick, Voigt developed what her primary care doctor suspected was bronchitis in fall 2010. The symptoms grew worse despite treatment, and after further tests that December, Voigt was diagnosed with multiple myeloma.
She immediately started chemotherapy at the University of Vermont Medical Center, and felt so good during her initial treatment that she spent a weekend in January 2011 sledding, skating, and skiing with her grandchildren. She thought she pulled a muscle during the fun, but later learned she needed a hip replacement. (Multiple myeloma can form tumors within the bone marrow, resulting in weakened bones and an increased risk of fractures.)
Once she had recovered, she underwent an autologous stem cell transplant — standard care for most multiple myeloma patients — followed by more chemotherapy. Years of remissions, recurrences, and still more chemotherapy regimens followed, during which Voigt developed a strategy for dealing with her cancer.
“Each time I had to go to the hospital, I dressed up in new clothes and makeup like I was going to work,” she explains. “I made multiple myeloma my job.”
A new opportunity
When her Vermont oncologist retired about five years into Voigt’s treatment, he recommended that she check-in regularly at DF/BWCC — where new clinical trials for multiple myeloma were being developed. Each six months starting in 2015, while continuing on chemotherapy at home, Voigt drove to Boston and met with Jacob Laubach, MD, MPP, clinical director of Dana-Farber’s Jerome Lipper Multiple Myeloma Center.
After nearly three years, Voigt got the call from Laubach she was waiting for. She could join phase 2 of the KarMMa trial, led by Laubach’s colleague Nikhil Munshi, MD, director of Basic and Correlative Science at the Lipper Center. The study was designed specifically for multiple myeloma patients such as Voigt who had received at least three previous treatments, and used a therapy known as CAR T-cell therapy. CAR T-cell therapy is an innovative form of immunotherapy that uses specially altered T cells to target cancer cells more specifically.
“The process of identifying an available clinical trial slot for CAR-T therapy takes considerable time and coordinated effort,” Laubach notes. “Through it all, Susan was incredibly determined as she persevered through each step in the process.”
Thrilled and proud
Voigt’s husband joined her in Boston for her July 2018 CAR T-cell procedure, which required several weeks of outpatient preparation in the Lipper Center and then 10 days as an inpatient at Brigham and Women’s Hospital. She jokes that it doubled as the honeymoon they never had after their 1970 wedding.
For Voigt, and most of the other 127 participants, the KarMMa trial was a success. At a median follow-up of 13.3 months, 72% of the efficacy evaluable patients had a response — a measurable reduction in their cancer — and 28% a complete response or better. Of the 28 patients who had a complete response, an estimated 65% including Voigt had a remission lasting at least 12 months.
Her remission now nearing three years, Voigt says she is feeling the best she has in a decade. She credits Laubach, nurse practitioner Virginia Dalton, MS, NP, and her entire Lipper Center team for helping her through the CAR T process, and her family for her at-home recovery. This includes many bicycle rides with grandson Oliver, who pedaled right alongside grandma’s three-wheeler while a preschooler.
“We continue to collaborate with Susan’s oncology team at the University of Vermont in regularly monitoring her disease status, and she remains in a complete response following her CAR-T treatment,” says Laubach. “The approval of CAR-T treatment represents a critical step forward in the myeloma field, as this approach has the potential to induce excellent, lasting responses in patients for whom other treatments are no longer effective. We’re thrilled Susan has done so well.”
So is Voigt, not only for herself, but for all those other patients in Vermont and around the world who, like her, will get another chance at a long remission of multiple myeloma.