Clinical research nurses: ‘Shepherds’ of the CAR T program

What's it like to work at the center of a true medical and scientific revolution – on the one hand tending to desperately ill patients, and on the other, helping advance a breakthrough treatment that's rewriting the book on cancer care?

It's hectic. It's nonstop. It's emotional, often overwhelming. But it’s also a place to witness miracles.

Such is the life of the clinical research nurses who staff City of Hope's CAR T cell program.

City of Hope is justly proud of its work with CAR T cells, which are immune cells taken from a cancer patient, re-engineered to seek out and destroy cancer, then re-introduced as a potent living drug.

Clinical research nurses play a critical role in maintaining the program's complex machinery and overall integrity. They are the quality control managers and information wranglers, ensuring that every protocol is rigorously followed, every appointment is kept, every lab request gets proper attention and every bit of data collected is routed where it needs to go.

“They are the glue that holds everything together,” said Stephen J. Forman, M.D., the Francis & Kathleen McNamara Distinguished Chair in Hematology and Hematopoietic Cell Transplantation and head of the Hematologic Malignancies and Stem Cell Transplantation Institute, who oversees the program as director of the T Cell Immunotherapy Laboratory and the T Cell Therapeutics Research Laboratory.

“Without them,” he added, “there is no program.”

Most important though, CRNs are the “shepherds” who make the CAR T process logical, understandable and as easy as possible for patients and trial participants.

“That's the special part of the job,” said Chona Gomez, B.M.T.C.N. She's been a nurse for 25 years and joined City of Hope in 2004. “To see patients wide-eyed, eager to learn, to take them through the process, put them at peace. My job is to make their lives easier.”

Easier said than done, especially with the nurses' large and growing workload.

“At any given time,” said Julie Kilpatrick, M.S.N, “I'm working with 13 to 20 patients, all at different trial phases. Typically, my patients come in three times a week, with as many as 10 lab tests needed at each visit.”

But it's precisely that interpersonal contact that attracted the much-traveled Kilpatrick, who lived in Florida, New Jersey, Kansas and Canada before settling in Southern California in 2012. Working primarily with brain cancer patients for whom all other options have failed, Kilpatrick knows how scared they are – and how reassuring she can be.

“As nurses, we just have a way with patients,” she said. “They let their guard down with us, we make them feel at ease and they respond.”

Sometimes that reassurance begins even before the first appointment. Though it's not officially part of her job, Kilpatrick frequently answers the department's call-in line, where people from all over the world reach out in search of answers after receiving their brain cancer diagnosis.

“They'll get on the phone,” she said, “the patients, or the relatives ... and they'll say, 'We're desperate!' It's so overwhelming for them. They're looking for some twinkle of hope. I can easily spend 45 minutes with them, trying to help.”

Kilpatrick's above-and-beyond helpfulness is shared by her colleagues.

 

“What (the nurses) have in common,” said Forman, “is a commitment to the patients and to what we are trying to do.”

Speak to them for just a few moments and you hear it in their voices: a total devotion to the people in their care. They choke up and halt mid-sentence when they remember different ordeals with different patients, as if they were talking about members of their own family.

“I had one patient who was too sick to get her CAR T treatment,” recalled Gomez. “She had two sons, and she was so ill we almost lost her,” she continued, holding back tears.

“But at the last minute her condition improved enough so we could go forward. I visited her two weeks after her treatment, and she was doing so well! She made it!

“We gave each other a huge hug!”

Michelle Mott, B.S.N., a self-proclaimed “lab geek” from Alvin, Texas, joined Forman's team in its earliest days.

 

“Some patients are very businesslike when they come in,” she said. “Others, though, I watch their eyes light up when they see me, and it's 'How are you? So good to see you!'”

Mott takes comfort in the incremental improvements she is able to provide.

“Maybe we helped extend someone's life so he could see his daughter's wedding, or a first grandchild. That's a big deal.”

An even bigger deal is the astounding potential of CAR T cell treatments, something the CRNs are witnessing firsthand. Repeatedly, they've watched in amazement as even the most aggressive cancers have diminished, even disappeared.

“It's phenomenal!” exclaimed Mott.

“When these cells work, they work really well,” she said. “To see someone's PET scan with tons of disease on it, and then 28 days later, it's gone ... that is so cool!”

 

Cool, but not yet complete. Though the brain cancer trials are making progress, the treatment does not always work.

“Cancers are sneaky survivalists,” cautioned Kilpatrick. “But T cells are very promising. We often see them working in small ways. It's not a cure yet, but when tumors shrink, or hold their size, that's real hope for glioblastoma patients.”

The nurses are a close-knit group. They celebrate their patients' victories, lean on each other for emotional support when things don't go so well and watch each other’s backs.

“The teamwork is amazing,” said Gomez. “It's such a cohesive group. We all know how emotional this work can be, so if I'm drowning, there's always someone to step in and help.”

Gomez's role is slightly different. She handles lymphoma patients receiving one of the two Food and Drug Administration-approved CAR T cell treatments as their standard care. Though it may be a slightly more optimistic environment than a clinical trial, it is still deeply challenging work, and Gomez was reluctant to take it on at first.

“I had to change my thinking,” she recalled. “I already had a very full load, working with transplant patients. Also, CAR T cells are given as a last resort, when everything else has failed. I wasn't accustomed to that kind of environment.

“But Dr. Forman said to me, 'You'll see miracles here.' So, I signed up. I'm so glad I did. I'm so encouraged by what I see. I look at the scans [of the patients who are doing well] and I'm simply in awe! I haven't seen anything else like it. It's opening up doors.”

All the nurses hope more doors will open soon for many more people.

“I want to see more cures, more treatments getting to market faster, more CAR T cells getting manufactured as quickly as possible,” said Kilpatrick.

Mott wants to see more people entering the clinical research field to make more breakthroughs possible.

“We need more kids entering the sciences,” she said, “because without them, we don't get any of this stuff. Remember, every one of today's routine, everyday drugs began as a clinical trial.”

“Working here has changed me,” reflected Gomez. “I don't worry about the small stuff at home anymore. And yes, it's hard when a very ill patient says, 'Please help me!' But just by being there, even if we just listen or share, it makes a difference.”

“And the best part,” she smiled, “is seeing them get better.”

 

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