‘Going with the flow’: Local cancer patient undergoing special clinical trial
Susan Priest of South Strabane Township is one of fewer than 6,000 people each year in the United States who are diagnosed with a rare gastrointestinal stromal tumor (GIST).
In 2017, weeks before Priest was set to celebrate her 70th birthday on a Baltic Sea cruise, she dropped by a blood bank to donate, but was told she was anemic.
So Priest scrambled to schedule a colonoscopy and endoscopy before the trip to make sure she was OK, but when a doctor walked into the room to discuss test results, Priest knew the news wasn’t good.
“The doctor came back holding a picture – an X-ray – and before he said anything I knew I wasn’t going on a cruise,” recalled Priest, a retired librarian who volunteers at WHS Washington Hospital and is a longtime member of the Washington Rotary Club.
Cancer can start anywhere in the body, and GISTs usually start in the digestive tract, but Priest’s GIST started in the intestine.
She underwent surgery to remove the tumor and was placed on oral chemotherapy for two years, then went for followup scans every six months.
But in October 2021, the cancer returned. By May 2022, the tumor had doubled in size and was continuing to grow.
Chemo pills didn’t work this time, so she visited Dr. Melissa Burgess, an oncologist at UPMC Hillman Cancer Center in Pittsburgh.
Burgess suggested Priest sign up for a clinical trial that was underway, with a goal of reducing the size of the tumor.
But traveling to Pittsburgh would prove to be a challenge.
So doctors arranged for Priest to take part in the clinical trial at UPMC Hillman Cancer Center – Washington. For more than a decade, Washington Health System has partnered with UPMC Hillman Cancer Center to provide cutting-edge cancer treatment to cancer patients in the area, eliminating the inconvenience of traveling for care.
UPMC Hillman Cancer Center, one of the largest integrated cancer networks in the nation, provides more than 70 treatment facilities located in local communities in Pennsylvania, western New York, northern Maryland, and eastern Ohio.
Priest is under the care of Dr. Nitin Kapoor, a hematologist and oncologist. Once every four weeks, she visits the cancer center, where Kapoor assesses her progress.
The Phase II clinical study – which, in all, will include 388 patients at multiple centers – calls for a combination of oral drugs, Sutent (sunitinib) and Bezuclastinib (CGT9486) to determine if a tumor will stop growing.
“Up until March, I took 10 pills every day – eight of the study drug and two Sutent. Now, I take eight pills, six of the study drug and two Sutent. The trial is about Sutent, a known drug that works with this kind of cancer, combined with a study drug to see if the study drug improves the performance,” explained Priest.
In 11 months’ time, Priest’s tumor has shrunk 33%.
“That’s extremely substantial within the diagnosis criteria for cancer response,” said Kapoor. “I’m very encouraged about her long-term outcome, and her being able to respond.”
What is unique is that Priest is the lone participant at the Washington cancer center in the clinical trial.
“I’m very excited about Susan’s participation in the clinical trial. It was a unique situation for her in that the clinical trial was available in Pittsburgh, but we were able to open it up to her in Washington since travel was a major barrier for her,” said Kapoor. “This trial was set up specifically for her. Only Susan is doing this one here. The Washington community is lucky to have Hillman in Washington. I’ve been here 13 years, and am happy to be part of such a great cancer community in Washington County and to deliver world-class care to patients and Washington and Greene counties.”
According to Priest’s treatment plan, she will remain on the oral medications indefinitely, as long as her tumor is controlled or continues to shrink and she tolerates the side effects.
Among the side effects she’s dealt with is a loss of her sense of taste.
“Now, I can’t taste things right, and that’s hard for me because I like salty snacks. Popcorn is a favorite, but now it tastes like cardboard. But it is what it is, I’ll deal with it and move on. I’m going with the flow. As long as the tumor is shrinking, then the price I have to pay in terms of those side effects is worth it. I enjoy life, I enjoy the things I can do, and I’ve learned not to focus on the things I can’t do. As long as I can read and give back, and continue volunteering, I’m OK,” said Priest, a science fiction and fantasy fan.
After she retired from Citizens Library in 2005 (during her career, she had served as reference librarian, assistant director and director), Priest lost 60 pounds, and since undergoing cancer treatment she has lost an additional 60 pounds – on what she jokingly calls “my chemo diet, not a keto diet.”
She has been working with a trainer at WHS Wilfred R. Cameron to regain muscle and strength.
“Overall, I feel pretty chipper,” said Priest.
Priest, now 76, is grateful for the medical experts at WHS and UPMC, and for the opportunity to participate in the clinical trial.
“It’s been wonderful. If I have a problem, I can call them or text them, and they’re wonderful about responding. If I had not seen Dr. Burgess and found out about that trial, it would have been a very different conversation,” she said.
Kapoor is pleased with Priest’s results.
“Susan holds a very special place in my heart. She is a volunteer at the hospital, and she’s always giving back in the community, giving back to patients at Washington Hospital. It’s really a joy to see her being stable in the clinical trial,” said Kapoor.
Priest also credits the support of her family, friends, and church family at Trinity Anglican Church for helping her on her cancer journey.
Her brother, in fact, surprised her with that Baltic cruise in 2019.
“I’ve got wonderful family support and fantastic church support,” said Priest. ” When someone gets a diagnosis of cancer, they need to know where to reach out, and they need to know they’re not alone.”