Mary Ann Vanmulem didn’t set out to get involved with research, but after her own pancreatic cancer diagnosis, she saw clinical trials as an opportunity not only to help herself, but also to help others.
“Somebody’s got to participate in them, or we’re not going to get any further ahead in this battle against cancer,” she says.
Since her diagnosis in 2013, she’s participated in four clinical trials.
“I guess I’m the ultimate volunteer,” she says with a little laugh.
The first clinical trial came after her surgery in August 2013. Luke Schoeniger, M.D., a surgical oncologist who specializes in gastrointestinal cancer, performed a Whipple procedure that took about seven-and-a-half hours. Mary Ann stayed in the hospital for nine days.
She needed blood thinners and decided to volunteer for a clinical trial testing a new type. The trial required that she give herself injections, which she struggled with, but thankfully her husband stepped in to help. She felt it was important to stick with it because the drug would keep her from getting a blood cot after surgery.
“If they can learn something to help somebody else, that’s good,” she says.
With Marcus Noel, M.D., Mary Ann needed chemotherapy. She decided to volunteer for a clinical trial to test a drug called erlotinib (Tarceva), a targeted therapy that’s being used for lung cancer. Researchers wanted to see if it could be effective for pancreatic cancer. She received that as well as chemotherapy.
However, it was not a good fit for Mary Ann. Her legs swelled, and the drug made her nauseous. She wasn’t on it long before stopping. Despite this, she still believes clinical trials are important and she says she’d do it again in a heartbeat.
“I never felt that I was in danger from doing this,” she says. “The doctors at the hospital would watch. They’d continually be checking on you.”
For her next clinical trial, Mary Ann participated in a study to examine patient-doctor communication. Over the course of about three years, she and her caregiver — first, her sister and then her husband — met with a researcher who’d interview them, asking questions about how she’s dealing with cancer, how the family is managing and whether she had a good relationship with her physician.
While the trial didn’t provide a treatment per se, Mary Ann says it did provide a benefit to her by making her think about questions she should ask her doctor or topics she should discuss with her family.
“And besides, they paid you 15 bucks every time they interviewed you, so it was kind of a fun thing,” she said with a chuckle.
After doing well for about two years, Mary Ann’s levels of the biomarker CA19-9 started to creep up, eventually reaching a point that meant her cancer had returned. The normal range is from 0-30 but hers had gotten up to around 800. Imaging revealed a tiny spot on her liver, which meant she needed more treatment and considered chemotherapy. Her oncology team told her about a trial for an experimental immunotherapy drug called durvalumab that’s being used for some patients with bladder cancer. She decided to enroll, which meant she’d get chemotherapy as well as the immunotherapy drug.
“I really think it’s important. You have to do whatever you can possibly do to make your life be better. And if it’s the kind of stuff that they offer you, you at least try it,” she says. “You have nothing to lose in trying it.”
Although the drug has not worked for other patients on the trial, it appears to have worked for Mary Ann. Her cancer shrank by about 50 percent in size before she had to stop the trial because of kidney issues. While doctors can’t know for sure whether her cancer’s shrinkage is from the experimental drug or not, they think this treatment played a role in Mary Ann’s stabilization. More work is needed to determine why it helped her but not others.
In the meantime, Mary Ann is doing her best to take advantage of the extra time that she didn’t expect to have. Last Christmas, she wasn’t going to put up a Christmas tree, but then she realized, it might be her last Christmas. So she put it up anyway.
With that memory in mind, putting up her tree this year felt extra special. She’s grateful that she could participate in research that has helped her have more time with her husband, her children and her grandchildren — while also helping others.
“I’ve always just been a believer that you need to give a helping hand,” she says. “Take care of your neighbors as well as yourself."