Robyn Stacy-Humphries has biopsied and diagnosed cancer her entire career, so when she developed an enlarged lymph node above her clavicle, her clinical perspective told her there was something very wrong.
After reviewing her own imaging test and noting that there were many concerning small lymph nodes, she knew had lymphoma.
“I had been experiencing what I thought were allergies, but it turned out I had lymphoma in my nasal cavity,” she recalls about her 2011 diagnosis of diffuse large B-cell lymphoma (DLBCL).
Robyn began chemotherapy near home in North Carolina, which quickly put her cancer into remission. Her oncologists were hopeful that she was cured, but then the cancer recurred in 2015.
She began a second round regimen of high dose chemotherapy followed by an autologous stem cell transplant — a procedure that involves harvesting a patient’s own stem cells and then re-infusing them to promote growth of healthy new blood cells — followed by head and neck radiation. She went back into remission but relapsed again in April 2016.
The best option left was an allogeneic stem cell transplant — where she would receive stem cells from another person — but she did not have an identified bone marrow donor match. She also had serious concerns about the disruption this type of intensive treatment approach would have on her daily life.
"I am a full time physician and generally active person. I already had to limit my practice. If I survived an allogeneic transplant, I would not be able to work in patient care. As the primary breadwinner of the family, I frantically began searching for clinical trials that would control my cancer and give me a better quality of life,” Robyn recalls.
Through her research, she read about CAR-T immunotherapy and believed she was a good candidate for the treatment. CAR-T involves extracting and re-engineering disease-fighting white cells (T-cells) from a patient’s blood by exposing them to a de-activated virus makes them able to recognize specific markers of the surface of DLBCL cells. These “re-educated” T-cells are then infused back into the patient, similar to an autologous stem cell transplant process. Instead of relying on high-dose chemotherapy to eradicate the cancer and using stem cells as a rescue to regrow healthy bone marrow cells, CAR-T therapy essentially creates “super T-cells” that go in and recognize a specific marker on the surface of the cancer cell and then eradicate the cancer directly.
Ironically, it was through a physician moms’ Facebook group that she learned Ohio State had an opening in a clinical trial for CAR-T. She and a friend had posted to the group about her desire to get CAR-T therapy and Samantha Jaglowski, MD, who is now Robyn’s hematologist, responded noting Ohio State had an opening.
“I called her that same day at 7 p.m. and she answered. I flew up shortly after to be evaluated and join the trial,” says Robyn.
Her treatment journey was not without setbacks – she had a delay in production of her CAR-T infusion and had to go on two bridge treatments to keep her cancer at bay – but in September 2016 she received the treatment. Within a week, all the palpable lymph nodes were gone. Within three months, there was no evidence of disease. Now nine months post treatment (July 2017), her cancer remains in remission.
“I hope I am cured but if I’m not maybe with the new therapies and medicines they can turn this into a chronic not a lethal disease,” she says. “I feel good, and I have an excellent quality of life. When I go somewhere, people don’t know I have been sick.”
Robyn says that now she able to do “almost everything she wants to” – she is able to work and support her family, spend time with her children and enjoy travel with her husband.
Last December, she earned open-water dive certification and then went diving in French Polynesia. In March 2017, she ran the Cooper River Bridge Run 10K race.
The OSUCCC – James has a number of active and pending clinical trials available for patients with lymphoma. Before the end of the year, oncologists anticipate that at least one of the CAR-T cell products for lymphoma and leukemia will be approved by the Food and Drug Administration.
To learn more about available trials and treatment at the OSUCCC – James, call 1-800-293-5066 or search our clinical trials.