Purpose Beyond a Cure: Advancing Hodgkin Lymphoma Treatment
Emilie Lynch has passed the 5-year milestone that doctors consider a yardstick for being cured of Hodgkin lymphoma not once but three times. Today, she channels her experience into a career as a clinical pharmacy specialist at UF Health.
Emilie Lynch has passed the five-year milestone that doctors consider a yardstick for being cured of Hodgkin lymphoma not once but three times. Today, she’s channeling her experience into a career as a clinical pharmacy specialist at UF Health, where she works to improve treatment for young people with the same blood cancer she had at 16.
Hodgkin lymphoma, a cancer that affects the lymphatic system and limits the body’s ability to fight infections, has survival rates close to 90% for children and young adults. Treatments are advancing quickly. Yet, the threat of long-term adverse effects from standard chemotherapy and radiation treatment is ever-present for patients like Emilie.
“It’s been enough years now that the risk of Hodgkin coming back is pretty much nonexistent for me, but the main risk is secondary cancers,” said Emilie, who was treated in Delaware, over the border from where she grew up in Pennsylvania.
Patients who receive radiation to the chest to treat Hodgkin lymphoma have a higher risk of developing breast cancer later. Emilie, who has an extensive family history of breast cancer, must get a mammogram or breast MRI every six months to check for cancer. The radiation she received also increased her skin cancer risk. Emilie has had a spot of basal cell carcinoma removed and must be vigilant with skin checks.
The list continues: Risk of hypothyroidism and heart disease. Neuropathy. Potential infertility. The heavy cloak of fatigue that Emilie keeps at bay through a disciplined regimen of strength training five days a week and counting her steps.
“It’s definitely hard to keep up with all the appointments, even for me working in this field,” Emilie said.
Now, UF Health is at the forefront of clinical trials that aim to reduce the burden of these side effects. The trials, some of which use immunotherapy instead of chemotherapies, seek to fine-tune less-toxic treatments for Hodgkin lymphoma. They may also provide valuable insight into how immunotherapy could advance treatments for other cancers.
“These trials are essential because otherwise we won’t know what we can do to make patients’ lives better and make them healthier long term,” Emilie said.
Riley McFadden is one patient who received the very latest cancer treatment at UF Health, thanks in part to a clinical trial. A competitive swimmer who always took care of her body and rarely got sick, Riley was starting her senior year of high school in Tallahassee when she learned that her slower swim times and swollen lymph nodes were symptoms of cancer. She had the same cancer as Emilie: Stage 2 bulky Hodgkin lymphoma.
Riley’s doctors quickly transferred her to UF Health Shands Children’s Hospital, where she received highly personalized care. She enrolled in a clinical trial that’s replacing and comparing standard chemotherapy cycles with immunotherapy cycles.
Throughout her treatment, Riley reminded herself that the clinical trial allowed her to be part of an effort to advance treatments for others in her shoes.
Now, she’s sharing her story and raising money through Dance Marathon, which supports UF Health Shands Children’s Hospital through Children’s Miracle Network Hospitals.
“No matter what the amount is, it’s going to make a difference,” she said.
The trial Riley was treated in is testing two new medicines. One, brentuximab vedotin, is a targeted therapy that causes chemotherapy to stick to cancerous cells in Hodgkin disease, called Reed-Sternberg cells. The drug accumulates in tumor cells but largely leaves healthy cells alone. The other, nivolumab, takes the brakes off the body’s immune response, essentially preventing the cancerous cells from evading the immune system.
Both drugs have been found to be effective at killing tumors with acceptable side effects in patients with relapsed Hodgkin disease, said UF Health pediatric oncologist William Slayton, MD, the clinical leader of the pediatric disease site group at the UF Health Cancer Center.
“Often, medications are first tested in relapsed Hodgkin patients, but this trial is specifically for patients with standard or lower-risk disease,” Dr. Slayton said. “We’re trying to fit the treatment to the patient like a glove.”
Patients in both groups of the clinical trial avoid the drug bleomycin, which has a high risk for pulmonary fibrosis. Patients who have a rapid response to chemotherapy also avoid radiation.
“The trial tests whether a chemotherapy backbone is enough by itself to cure the majority of patients,” Dr. Slayton said. “Through a scheme that classifies patients’ risk, lower-risk patients get less chemotherapy than higher-risk patients, and a PET scan determines who gets radiation. We want to achieve the cure with fewer side effects.”
Emilie has found a deep sense of purpose in her own cure, dedicating herself to easing the burden of patients undergoing treatment on the UF Health pediatric hematology and oncology/stem cell transplant unit.
Emilie, who earned her PharmD at the University of Florida before completing a specialized residency at Seattle Children’s Hospital, also plays an active role in developing clinical trials across the country as a member of the Patient Advocacy Committee of the Children’s Oncology Group, a clinical trials group supported by the National Cancer Institute.
She draws on her own experiences in small and large ways, like helping families set up medication calendars to make the process more manageable. She remembers how daunting it was when she and her mom had to juggle upward of 20 medications.
“I’m able to empathize with what patients are going through because I went through it myself,” she said. “It gives me such a passion and desire to do the absolute best I can for these patients.”