Editor’s Note: This occasional blog series features stories of CHOP research heroes who have participated in clinical research studies. Without the generosity and dedication of families, patients, and members of the public who take the time to be a part of research, many trials would not succeed.
Nick Pautler, a biomedical engineering student at the University of Delaware, can tell you how a lot of things work – from the microbial science behind baking sourdough bread, to the intricacy of model railroads, to the way that an army of re-engineered T-cells worked hard to fight the cancer cells in his body this past year.
Diagnosed with acute lymphoblastic leukemia (ALL) in his junior year of high school, Nick received immunotherapy through chimeric antigen receptor (CAR) T-cell clinical trials at Children’s Hospital of Philadelphia. While his fight against ALL – the most common form of childhood leukemia – hasn’t been easy, Nick has kept a level head and positive outlook throughout.
On Sunday, Sept. 24, Nick represented thousands of young people diagnosed with cancer as a 2017 Patient Ambassador at the CHOP Parkway Run and Walk, a fun-filled event that raised over $1.1 million for cancer research and care at CHOP. Nominated as an Ambassador by the doctors and nurses who treat him at CHOP, Nick stood on stage in front of thousands, taking on the important role because he wanted to “help make the event more personal” and give back to CHOP. Even after the Parkway Run and Walk, however, Nick continues to help put a personal face to oncology research and support scientific discoveries by sharing his story – one that he hopes will inspire other patients and families.
From Baking to Biomedicine
“From the beginning, I always asked the doctors, ‘How does this work?’ or ‘Why do we do this?’ to make it all a learning experience,” said Nick, when describing his experience in the CHOP cancer immunotherapy trial.
It’s clear that making do with difficult situations is something he’s quite good at. After his initial ALL diagnosis, Nick began rounds of chemotherapy at the CHOP Buerger Center and began to take prednisone, a steroid drug taken during chemo that can make people hungry more often than normal. While at home, Nick stayed active by starting to bake and cook, hobbies born out of prednisone’s side effects. He graduated from baking simple breads to trying his hand at sourdough, finding the way that the micro-organisms in the flour multiply (a “living breathing ingredient” he explains) very cool.
“It was helpful to have a distraction for most of the time, because I found that when I didn’t, I would sometimes have moments where I would melt down, because the situation was frustrating,” Nick said. “Cancer is a part of who you are. And you can’t change that, but don’t let it define you. Don’t let it shape what you’re going to do, or not do. Don’t pass up any opportunities.”
By November of 2016, the chemo still hadn’t knocked down Nick’s cancer to remission. Earlier that year, one of Nick’s doctors, Charles Bailey, MD, attending physician in the Cancer Center at CHOP, had suggested Nick have his T-cells collected through a process called apheresis as a safeguard, just in case immunotherapy indeed became an option. Nick and his family began a conversation about CAR-T cell therapy.
Through discussions with Dr. Bailey, Stephan Grupp, MD, director of the Cancer Immunotherapy Program, and other doctors at CHOP, Nick learned the science and specifics of how CAR-T cell therapy worked. As it turns out, his education on the engineered T-cells would contribute to his decision to choose biomedical engineering as his major at the University of Delaware.
“After a week of chemo to make room for the engineered T- cells, I received a small infusion of T-cells followed by a larger one,” Nick explained.
He had a fever for about 10 days, but no other side effects. After staying at CHOP for the infusions, he would come in for monthly follow-ups to receive IV immunoglobulin, which provides patients with the antibodies they lose during treatment – but need to ward off infections.
“The way that the immunotherapy works, the T-cells go after all of my B-cells, whether they are the leukemic version or a regular healthy cell. However, the B-cells also make antibodies – and antibodies are pretty important,” Nick said.
While the engineered T-cells did drive Nick’s leukemia into remission, after a few months, they weren’t able to stick around in his body, and their effects decreased. After taking the summer to decide, Nick chose to participate in another CAR-T cell trial at CHOP later this year – one that will evaluate the use of humanized CART19 cells (or huCART19 cells) in patients with relapsed or refractory CD19+ leukemia and lymphoma who were treated with a B-cell directed engineered cell therapy product before. The hope is to extend the time the cells stick around and help more patients avoid the risks of bone marrow transplant.
Moving Forward and Making Plans
Though his treatment journey will continue, Nick has some advice to share with other young patients who might have just received their ALL diagnosis and feel hesitant about coming to CHOP.
“If you’re afraid – whether you’re coming to CHOP for treatment or some sort of research – whether it’s a trial or just testing – the staff of CHOP wants to help you,” Nick said. “And if you’re helping with research, you’re helping other people.”
During his chemo treatments, Nick stayed on top of his high school classes by attending lectures via FaceTime when he couldn’t physically make it to class, and he graduated as valedictorian of his senior cohort. While at home, he kept busy by constructing model railroads for as long as his hands could stay steady despite the side effects from the chemo. He also experimented with baking using healthier ingredients like whole wheat flour and took long drives along the scenic back roads near his town.
“My first thought was, ‘Why me?’” Nick said. “But going forward from that, I have gotten to ‘What now?’ Because if you’re afraid of the whole situation, you have to remember you’re going through it now for a short period of time so that in the end, you can have a long life with memorable experiences, and build those model trains somewhere in the future.”
Cancer might be a part of Nick’s life, but he’s taking control of it in a brave and inspiring way: He has his eye on a career in healthcare. Of all the sciences, biology ranks as his favorite. His dream job, however, isn’t to be a physician. Nick plans to pursue cancer research while at the University of Delaware.
“I’d rather be working in the lab doing research and making discoveries,” said Nick, a true “research hero,” in every sense of the word.
Go to the CHOP Clinical Trial Finder to learn more about participating in clinical trials.
Read more about CHOP’s Cancer Immunotherapy program here.