Hand-made posters greeted Barb Wells when she returned to her Lawrence home after an emotional road trip to a Texas cancer hospital.
“You are the best Mom ever,” said one created by her 7-year-old daughter, Keira. “Keep on fighting,” said the other, by her then-10-year-old son, Vaughn.
Wells had fretted all the way home about how she might need to leave her family, perhaps for months, to battle stage 4 breast cancer through a clinical drug trial in Houston. Seeing her kids’ messages reinforced how difficult that would be.
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“It was really hard,” the 42-year-old Kansas native recalled. “Fighting meant Houston, and it meant being away from them.”
Her rescue came, in part, through another pivotal moment during that November road trip, the moment when a backseat passenger conducting research on a laptop discovered something important.
Within days, that research and more launched Wells on a much shorter road trip — to Kansas City and the St. Luke’s Koontz Center for Advanced Breast Cancer.
The Koontz Center had opened only weeks earlier, billed as among the most comprehensive programs of its kind nationwide and the first in Kansas City dedicated to women whose breast cancer had spread to other parts of their bodies.
And the center was enrolling patients in the same clinical trial that staff at the M.D. Anderson Cancer Center in Houston had pitched as perfect for Wells.
Wells soon met her new Koontz Center oncologist, embraced a revamped diet, learned other immune system supports and launched into a medical treatment plan that included radiation, chemotherapy — and joining that clinical trial.
“It was the first breath of hope, I should say, that we had had in several weeks,” Wells said. “They are definitely there to support you in any step of the journey there is.”
Koontz Center officials chart each patient’s response to drugs, diet, exercise and other factors to see how each item can help patients live longer and better lives while battling a cancer for which there currently is no cure.
“With all the advocacy around breast cancer, it’s hard to imagine that this is an underserved population, but it is,” said Timothy Pluard, medical director of the St. Luke’s Cancer Institute and the Koontz Center.
U.S. doctors diagnose 50,000 women each year with metastatic breast cancer — more than leukemia, Hodgkin’s disease and head and neck cancer combined, he said. Yet only about 10 percent of breast cancer research focuses on the late-stage disease, he said.
Pluard envisions a day when such patients become more like today’s patients with HIV, a disease that once routinely turned fatal, before new medicines arrived.
When Pluard started his career 20 years ago, women diagnosed with stage 4 breast cancer were expected to live about 18 months, he said.
“Now we are expecting them to live, on average, about four to five years, and it varies by the type of breast cancer. The next thing is, can we harness genomics and the immune system to try and extend that?
“Ideally, we find a cure. But it is complicated.”
A stubborn disease
Barb Wells was just 39 when she learned in July 2014 that she had stage 2 breast cancer.
Tests soon determined it was the estrogen-receptor type and that Wells was BRCA1 positive, meaning she had inherited the cancer gene, likely from her dad’s mother, who died of breast cancer in the late 1960s.
That meant Wells needed an aggressive treatment approach.
After she finished 16 rounds of chemotherapy, she had surgeons remove both breasts. Then, to be safe, she had a hysterectomy. Two reconstructive surgeries rounded out a hefty 2015 hospital schedule that didn’t conclude until year’s end.
The family celebrated her cancer victory with a trip to Jamaica. They walked on a waterfall, rode on a catamaran and released baby turtles into the ocean. A family portrait crafted on the beach made its way home to a cherished spot above their fireplace mantel.
Keira, who now is finishing second grade, and Vaughn, who is nearly done with fifth grade, enjoyed the trip so much they still can recount in detail what they did each day.
But that celebration fizzled all too soon.
Last July, Barb Wells noticed pain in her back. She shrugged it off at first, blaming stress and then a tumble she had taken. But instead of going away, the pain worsened.
Her oncologist approved a bone scan, “just to get the crazy thought out of my head that it was cancer,” Wells said. “I did the bone scan, and it wasn’t a crazy thought.”
More tests followed. They confirmed in October that her breast cancer had spread to her spine and liver.
Somehow, despite all the aggressive treatment, those nasty cancer cells still floated inside her.
Breaking new ground
The same month Wells received her stage 4 diagnosis, the Koontz Center opened at St. Luke’s campus near the Country Club Plaza.
The center embraced what its leaders call a unique dual approach to care.
First, it offered the latest in clinical trials, medical research and treatment options, all of which its staff tracks to determine what works, at what treatment stage it works best, and how side effects can be minimized.
In addition, the center provides supportive therapies to improve quality of life and help a woman’s immune system. Specialists in nutrition, exercise, yoga, acupuncture, mental health and spiritual health are on staff.
Though studies have looked at exercise’s impact on patients with early-stage breast cancer, very little has been done to study scientifically its impact on late-stage patients, said Pluard, whom St. Luke’s recruited away from Washington University in St. Louis three years ago to lead its cancer efforts.
“Heretofore our focus has solely been on killing that cancer cell, but we know that probably the most effective way to kill it is to have your own immune system do it,” he said.
“So things like exercise we know impact the immune system. We know that your diet and the bacterial composition of your gut … actually impacts your immune system and your response to some of these immune therapies. So we can’t look just at the tumor, although we do that, but we also have to look at the host.”
When a new patient arrives at the Koontz Center, she meets with her oncologist first then other members of her care team. Afterward, team members compare insights and recommendations designed for the patient’s specific cancer and overall health situation.
The oncologist then explains the recommendations to the patient. Relatives or significant others unable to attend the consultation in person can participate through a video hookup that allows them to see tests, such as scans, being discussed.
The center provides a DVD recording of the session for the patient to watch later. Often still reeling from the diagnosis, patients usually retain only about 10 percent of what the doctor says in such meetings, Pluard said.
“If you are facing the prospect of life or death, your stress level is so high that your ability to remember” is hindered, he said.
Staff will study whether the DVDs help patients comprehend and follow their treatment plans.
After learning her cancer had metastasized, Barb Wells researched treatment options. Family members helped.
M.D. Anderson quickly set up a consultation in Houston. Wells’ brother, Kyle Underwood, flew to Texas from his Colorado home to help his sister and her husband, A.R. Wells, ask questions and explore options.
The last person they met with during a packed day mentioned a website where they could check out clinical trials.
On the 12-hour drive back to Kansas, Underwood sat in the back seat researching the complicated, jargon-heavy site. It appeared that other cancer centers were conducting trials that looked similar to the one at M.D. Anderson.
“There’s one in Kansas City!” he announced.
The website didn’t give the cancer center’s name.
A.R. Wells pulled over at the next rest stop, where the group spent nearly an hour comparing their M.D. Anderson documents to the website language. It gave them hope, but they weren’t sure what they were reading. Barb Wells contacted her oncologist back in Kansas to see if he could help solve the riddle.
They arrived home the day before Thanksgiving, which meant a long weekend of worrying and still not knowing.
The next Monday morning, Wells’ oncologist called, told her about the Koontz Center and put her in touch with Pluard. The next day, she was in his office.
Because one-third of participants in the drug trial receive a placebo, Wells doesn’t know if she actually is taking the new drug, veliparib. It is designed to work with chemotherapy to genetically change the structure of her specific breast cancer cells to keep them from multiplying. She has experienced the drug’s one side effect, so it appears likely she’s on it.
Meanwhile, radiation has tackled her back pain. Chemotherapy is taming her liver tumors, which have shrunk about 90 percent. And the family’s new plant-based diet is keeping her strong enough that she still can work her job as a cable television advertising sales manager.
She moans about having to give up cheese and steaks. But she’s happy that the whole family has embraced salads, flax seeds, goji berries, other fruits, veggies, smoothies and healthy spices like turmeric, which is the main spice in curry and has been called “the most powerful herb on the planet at fighting and potentially reversing disease.”
Best of all, instead of being sequestered hundreds of miles away for treatment in Houston, Wells gets to spend quality time with her husband, attend their children’s sporting and dance events, and participate in daily “how are you doing” chats with everyone, including her mother, who lives next door and has attended nearly all her medical appointments.
“It means everything in the world to have her here,” said her mother, Sharon Underwood.
“It’s way easier to fight not being alone,” said A.R. Wells, the chief operating officer for Nuts and Bolts Hardware.
All are grateful that Barb Wells’ younger brother’s love of research helped steer them to St. Luke’s.
“I want to make sure I am here for my family,” Wells said. “I have a lot of life left to live, so I am not going down that easy.”