Follicular lymphoma: Prudie's story

For the past 10 years, when Prudence (Prudie) Withell has written her holiday cards, she has addressed one of the most important ones to Francisco Hernandez-Ilizaliturri, MD, Chief of Lymphoma at Roswell Park.

“In the card, I list all the milestones I was able to celebrate that year, including the weddings of my grandchildren, the births of my great-grandchildren and trips I have been able to enjoy, all because of the amazing care that I’ve received from Dr. Hernandez-Ilizaliturri and the rest of the Lymphoma team,” Prudie says. And at every one of her bi-monthly appointments, she bakes something for the Lymphoma Clinic staff, accompanied by a handwritten thank-you card to acknowledge all that they have done for her.

Prudie, age 78, has come a long way since her first appointment at Roswell Park a decade ago. One day in 2011, after working a full shift as a waitress, Prudie noticed swelling in one of her feet. Fearing she might have a blood clot, Prudie went to her local emergency room, where a CT scan showed that she had lymphoma. “I was advised by some of the ER nurses to go to Roswell Park, but I thought having cancer meant the same thing as dying, and I was afraid to go to Roswell Park.” When she asked her trusted primary doctor of 31 years what she should do, “His answer was, ‘If it was me, I’d be at Roswell Park’s door tomorrow.'"

A team she could trust

Within two weeks, Prudie met with members of Roswell Park’s Lymphoma team: Dr. Hernandez-Ilizaliturri; Ian Lund, PA; Alice Mohr, FNP-C, MSN; Kenneth McWhite, PA; and Mary Colleen House, RN. “I liked them all right away, but I was overwhelmed and scared. At one point, Ian was the only one left in the room with me, and I started to cry. He asked me why I was crying, and I told him, ‘I don’t want to die.’ He said, ‘Don’t worry, we’re not going to let you do that.’ And for a decade, Ian and the rest of the Lymphoma team at Roswell Park have made good on that promise,” Prudie says.

Prudie’s official diagnosis is follicular lymphoma (FL), a type of non-Hodgkin lymphoma (NHL) that accounts for 20-30% of all NHL patients. Follicular lymphoma affects both the bone marrow and lymph nodes in different parts of the body and usually grows slowly. After a complete cycle of chemotherapy in 2011, it appeared that Prudie’s lymphoma was in remission. But six months later, PET and CT scans showed that the lymphoma had recurred, and testing detected a second type of lymphoma that was aggressive and growing quickly.

Immediately, under the care of Maureen Ross, MD, PhD, Prudie underwent intensive chemotherapy for three weeks and then had an autologous bone marrow transplant (using her own stem cells) that kept her hospitalized for a month. “To help pass the time and get stronger, I walked laps around the hospital floor until I’d done a mile each day,” she recalls. The good news is that the aggressive lymphoma went into remission and has not recurred. The slower-growing lymphoma remains, but has been in a “holding pattern,” thanks to several different treatments.

She has PET and CT scans every three months, to monitor her lymphoma. To prevent infection, she has taken an antiviral drug twice a day since her bone marrow transplant, and since 2014, she has participated in various studies and clinical trials, including one that involves tazemetostat (Tazverik), a new drug for sarcoma that is being evaluated in people with Prudie’s type of lymphoma. “In some people, side effects of Tazverik include fatigue, stomach pain and nausea, but if I didn’t know better, I’d think I was on a placebo. I feel great. Occasionally I’m tired, but I know when to slow down.

Carrying on with living

"Most of the time, though, I keep myself busy, with gardening, baking, cooking, working around the house and visiting with my three kids, nine grandchildren and five great-grandchildren,” Prudie says.

“It also helps to have a good attitude and find humor whenever you can,” she adds. “My hair never grew back evenly after my first chemotherapy in 2011, so I wear a hat most of the time. My husband bought hair clippers and became my barber. He shaves my head when my hair grows out, and then we throw the hair into the yard for the birds to use in their nests.” she laughs.

Looking back, Prudie says she is “so glad that I followed my doctor’s advice and went to Roswell Park 10 years ago.

"Next time you are at Roswell Park, take a look at the license plates of the cars in the parking ramp. People come from all over the world to work here and be treated here. We in Western New York are so fortunate to have Roswell Park right in our backyard, and I am so grateful to Dr. Hernandez-Ilizaliturri and the rest of the Lymphoma team for all they have done for me and so many other patients.”