Honoring a Life by Finding Meaning
May. 4, 2021
There is no typical response to the diagnosis of an incurable, aggressive brain cancer; each patient's journey is as unique as their own fingerprints.
Stacy Pfaller, PhD, has used her personal experience to advance the quality of care for future patients living with a glioblastoma multiforme diagnosis.
Stacy worked as a research microbiologist at the U.S. Environmental Protection Agency. She is the author of more than 30 published reports through the EPA's National Exposure Research Laboratory.
Her battle began in the summer of 2018 with a breast cancer diagnosis. Stacy underwent a partial right mastectomy, chemotherapy, radiation therapy and a lumpectomy in January 2019.
Life delivered another blow shortly after, on Sept. 2, 2019, which happened to be both Labor Day and Stacy and her husband Jim's wedding anniversary.
Stacy started to have difficulty finding words and was having seizures; subsequently, she was taken to the emergency room.
While in the emergency room, imaging revealed a large mass stretching across both the left and right sides of the frontal lobe. The biopsy came back as a WHO grade IV glioblastoma.
"It was so jarring; there is no curing of this cancer, only ways to control it. How could there be a second cancer? It didn't make sense — Stacy was just getting over breast cancer and now we were being told she had anywhere from only eight to 22 months to live," said Jim, Stacy's husband.
The two cancers are completely unrelated; gliomas develop in the brain and remain there; the tumor doesn't spread to any other areas of the body.
Gliomas are malignant brain tumors with unknown cell origin. Glioblastoma is the most aggressive and infiltrative category of these tumors. There is no cure; with optimal treatment, patients have an average survival of one year, according to the National Center for Biotechnology Information. There are, however, treatment options to target the infiltrative component of the glioblastoma and slow tumor progression.
Following diagnosis, glioblastoma patients typically undergo surgical resection, followed by radiation in conjunction with the chemotherapy medication temozolomide (TMZ).
Due to the size and location of the tumor, surgery wasn't an option for Stacy, and she couldn't tolerate the harsh side effects of TMZ. Her treatment plan required thinking outside of the usual standards of care.
"Stacy was not a candidate for any of our clinical trials because of her recent breast cancer history," said Soma Sengupta, MD, PhD, UC Health neurologist and neuro-oncologist, associate director of clinical trials at the University of Cincinnati Brain Tumor Center and associate professor in the Department of Neurology & Rehabilitation Medicine at the UC College of Medicine.
Combination Therapy for Patients with Glioblastoma
Initially, Stacy received a standard-of-care therapy involving an anti-cancer chemotherapy medication in combination with radiation, but her bone marrow could not tolerate the chemotherapy.
Dr. Sengupta then tried Stacy on an old class of immunotherapy that blocks new blood vessel growth often used in treatment for glioblastoma. However, Dr. Sengupta combined this with a wearable, portable tumor treatment field device commonly used to slow or stop tumor growth in patients with recurrent glioblastoma.
Stacy needed an out-of-the-box strategy for her treatment, and Dr. Sengupta felt this combination therapy might work well for her.
Designed to prevent tumor growth, the anti-cancer immunotherapy medication starves the tumor by blocking a protein called vascular endothelial growth factor, or VEGF. Normal cells make VEGF, but some cancer cells make too much VEGF. Blocking VEGF may prevent the growth of new blood vessels, including normal blood vessels and blood vessels that feed tumors. Unlike chemotherapy that attacks the cancer cells, the purpose of this medication is to block the blood supply that feeds the tumor. This can stop the tumor from growing.
Indicated to treat glioblastoma in adult patients, the wearable, portable, FDA-approved device works by creating tumor treating fields, or TTFields, which are delivered right into the area of the tumor. When the device is turned on, it creates low-intensity, wave-like electric TTFields. Using four adhesive patches called transducer arrays, TTFields are delivered to the location of the tumor.
The device interferes with glioblastoma tumor cell division, slowing down or even stopping it. TTFields may cause tumor cells to be destroyed.
Stacy began the combination therapy in December 2019, just before Christmas.
Calm Amidst the Storm
"I remember it being December 21 — winter solstice, a time of change, and change began to happen — Stacy responded to the treatment," said Jim. "She got stronger; her balance improved. Her aphasia lifted; she found words, she was able to communicate again, which is so important, especially for Stacy — it's hard to take words from a scientist."
2020 was a good year for the Pfallers. They followed Dr. Sengupta's recommendations consistently and often. It hurt to take the device off and it was a pain to continuously shave her head, but the treatment was clearly working.
"I met Stacy in the midst of her treatment and she was doing really well," said Yehudit (Hudie) Rothman, a physician assistant at UC Health and the Department of Neurology and Rehabilitation Medicine at the UC College of Medicine. "She had a great response at the time and was feeling much better, they were even planning a vacation."
Coincidentally, Jim and Stacy's younger son, Cody, was set to start college at Northland College in Ashland, Wisconsin. They rented a camper and dropped Cody off at school, then headed west to Portland, Oregon, spending three weeks visiting with friends and family. "We had a great time; Stacy was still feeling good," said Jim. "We returned mid-September and over the next couple of months, I recognized Stacy was having more difficulty talking and her right side wasn't responding."
Jim has been by Stacy's side as her primary caregiver, along with the support of Dr. Sengupta and her physician assistant, Hudie.
"I help coordinate care and have discussions with patients and their family about end-of-life care," said Hudie. "I call about every two weeks to make sure everything is OK, see if they have any questions for me and provide overall support however I can."
One way Hudie provided support was by authoring Stacy's case study, which is published in Clinics in Oncology. "Stacy was always supportive of me taking notes and writing up reports about her, she really liked to know that other people could learn from her experience and I think that as a scientist she saw the benefit sharing her story could bring."
Stacy's story continues on in numerous ways, using the darkness of an incurable, aggressive brain tumor to shed some comfort for future patients who qualify for this type of unique treatment.
"Everyone at UC Health has been awesome — Dr. Sengupta, Hudie, Stacy's nurse, Brandi Turner — everybody has a friendly smile and is as helpful as can be," said Jim.
Dr. Sengupta is specialty trained through the United Council for Neurologic Subspecialties neuro-oncology fellowship and is currently training through the Andrew Weil Center for Integrative Medicine Fellowship — one of the top integrative fellowships in the country. "I lost a childhood friend to a brain tumor, which is why I gravitated to this career," said Dr. Sengupta. "I have a laboratory in brain tumor research and study pediatric brain cancers, melanoma and lung cancer in addition to glioblastomas. Right now, it's difficult to see a cure in sight for glioblastoma; I just hope that with many approaches, we can make many of these cancers more like a chronic disease — that is our dream."
A Life Full of Meaning
Stacy and Jim met at UC, where they both graduated. Jim received his degree in information systems and worked for Fidelity Investments for 20 years. Stacy got her undergraduate degree in biology, her PhD in microbiology and worked at the EPA where she had a lab for more than 20 years.
They married on Sept. 2, 1988. In 1991, when Stacy and Jim moved back to Cincinnati from Boston, Massachusetts, they didn't have jobs or even an apartment — they took the time off to travel around the U.S. and Canada for three months, traveling 12,000 miles and camping at 42 national parks.
Nature continues to be a solace for the Pfaller family. "You find any family that goes through a fight with cancer, and you'll find a strong family," said Jim. "It's hard on everybody, but you do what needs to be done because of the love you've built. I find comfort in a long walk or even spending time in the garden. Stacy always kept a beautiful garden. Being a biologist, she knows her flowers, and some of it has rubbed off on me — our yard is beautiful because of Stacy."
Her brilliant mind is reflected through the couple's two sons: Cody, 18, studying to become a chemist at Northland College, and Jake, 21, graduating this spring from Centre College and attending UC in the fall in their physics graduate program.
Jim recalls fond memories they've shared, including the various pets they've loved over the years. "Stacy took care of a red-eared slider turtle, which lives in the water and dirties the water up quickly, but she maintained that turtle for years," said Jim. "One of our favorite pets was a stray dog we took in — a mix of corgi and German shepherd breeds — Josie was the sweetest dog and always is in our hearts."
Stacy will always be remembered as the vibrant, intelligent woman she is — her positivity has touched family, friends and her healthcare team.
"Stacy is such a great patient," said Hudie. "It's wonderful to have someone who can have an awareness of her disease and then be willing to help open up treatment opportunities for other patients. She's one of the patients I always look forward to seeing. I'll remember her encouragement toward me writing up her story for the case study — and her bright smile."
Stacy's story doesn't stop here. She lived a life full of meaning, and it will continue on in the lives of everyone she's impacted; her family, friends and people around the world who are living through a glioblastoma diagnosis. She's given so much good to the world and made a huge difference — an impact that spills out past one life.
"Stacy's case is a very challenging one, but in spite of that, I think she did extremely well," Dr. Sengupta said. "It's not ideal, but she exceeded our expectations during this treatment because she is a fighter."
Stacy Pfaller passed away in April 2021 as a result of her glioblastoma diagnosis. Her husband and family requested her story be shared to provide comfort and hope to others living with this aggressive form of brain cancer. Please consider donating to the Dr. Stacy Pfaller Memorial Endowed Scholarship Fund.