An energetic school teacher and soccer mom from Cypress, California, she’d always been healthy, watching what she ate, working out regularly. “I was in the best shape of my life,” she asserted.
Then she started coughing. And she couldn’t stop.
The coughing fits disrupted her classes and left her gasping for air. Her stamina evaporated. She couldn’t climb stairs without help. Driving home from a shopping trip, the coughing forced her to pull over.
Ten months of wrong diagnoses left her exhausted and confused. Doctors said it was bronchitis. Pneumonia. Allergies. Acid reflux. They gave her antibiotics, cough syrup, antihistamines, steroids. The coughing kept coming back.
Then a prune-sized nodule appeared on her neck. More doctors, many scans, more questions. Thyroid problems? A paralyzed vocal cord?
Finally, almost accidentally, a CT scan looking for something else detected a 5-centimeter tumor on Paccione’s left lung. “Lung cancer was the last thing on my mind,” she said.
Further examination brought worse news. Paccione had Stage 4 nonsmall cell lung cancer with metastases to her bones, liver, lymph nodes and brain.
She was 35 years old.
She’d never smoked.
How could this happen?
It happens a lot.
“We’re seeing this very often,” said Ravi Salgia , M.D., Ph.D., City of Hope’s Arthur & Rosalie Kaplan Chair in Medical Oncology. “The population is changing for lung cancer, [reaching into] earlier age groups.” And because young people don’t routinely go for lung cancer screenings, it’s less likely their disease will be detected early.
Nor was Salgia surprised that Paccione didn’t smoke. Nearly 80% of patients diagnosed with lung cancer are not active smokers. (About 60% have quit; 15% never started). Long stereotyped as a smoker’s disease, lung cancer has many causes, including air pollution, asbestos, radon, heredity and genetic anomalies.
“Anybody with lungs can get lung cancer,” said Paccione.
While we’re dispelling misconceptions, here’s one more:
“We have to take away the old adage that a lung cancer diagnosis is the kiss of death,” Salgia insisted.
With over three decades in the trenches battling lung cancer — at Harvard, University of Chicago and since 2016 at City of Hope, where he also leads the physician team at City of Hope ǀ Newport Beach — Salgia has seen and helped bring about so many breakthroughs in so many areas that he now believes “we’re in the middle of a revolution,” and that for many patients — even some as seriously ill as Paccione — it’s no longer a matter of just prolonging life. Cures are within reach. “We’re seeing light at the end of the tunnel,” he said.
But it takes more than advances. It takes attitude, and Salgia speaks with pride about the patient-driven, total focus of his City of Hope team.
“We’re never content with just one treatment for a patient,” he said. “We always aggressively look for the next thing. We’re always asking, ‘What else, what else, what else?’”
He saw Paccione the day she called.
She was impressed, calling him “brilliant, innovative … always at least 10 steps ahead.”
But it was Salgia’s humanity that clinched the deal.
“He has this calming spirit about him,” she recalled. “He brought so much peace into the room.” She liked how he’d answer every question and “hugged every member of my family at every single appointment.
“He said to me, ‘I want you to go home and spend time with your family. I don’t want you to worry. Let me be the one to worry.’”
But ... Stage 4. Was he just being nice?
“We always try to offer hope,” Salgia said. “But never false hope.” He had a plan.
Two days later, they began. Because of how advanced the cancer was, Salgia ordered a nine-hour infusion of the powerful chemotherapy drug Taxol.
“It was surreal,” Paccione remembered, “to see someone with aluminum gloves, carrying the [chemo] bag, giving it to me but not wanting to touch it.”
The chemo caused toxicity problems and some neuropathy. But Salgia was already thinking ahead.
'Fast And Furious'
“We were working fast and furious,” he explained, “examining the genetics” for a possible targeted treatment.
“And we found a needle in a haystack.”
Paccione’s cancer tuned out to be a rare variety called ALK+, in which the ALK (anaplastic lymphoma kinase) gene undergoes a rearrangement, or “translocation,” and fuses with another gene, triggering cancer. Only about 5% of nonsmall cell lung cancers are ALK+.
In this case, the rarity was welcome. ALK inhibitors can disrupt that process and one of them, crizonitib (commercial name: Xalkori), was a drug Salgia had helped develop and shepherd through clinical trials.
He called Paccione immediately.
“He was so excited,” she said. “I could hear him smiling when he told me he had great news, that we had this treatment and I could take it in pill form!
“I think I was as shocked as I was the day I learned I had cancer!”
Salgia later switched Paccione to another ALK inhibitor, alectinib (marketed as Alecensa), which is better tolerated by many patients.
Within weeks, Paccione felt like a different person. The tumors began to disappear. Her energy returned. For the first time in years, she allowed herself to wonder if she’d ever achieve “NED” — no evidence of disease.
It had been a very tough three years. Paccione got her answer in late 2019, and here’s where she starts crying.
“When he [Salgia} told me I was in remission, it was the best feeling ever. Literally every day now I have to pinch myself, I feel so lucky.”
She’s grateful for her family’s support and gushes with praise for everyone at City of Hope (“You all have turned hope into my very own reality!”). She’s now giving back, volunteering, raising awareness and joining with Salgia to plead for more funding: Lung cancer kills more people than breast, colon and prostate cancer combined, but receives only a tenth of the research dollars.
That’s a shame, Salgia says, because even more breakthroughs — in immunotherapy, genetic research, better-targeted drugs, advances in surgery and radiation — are waiting. He thinks a cure could materialize by the time he retires. He wants it sooner.
“I want to be out of a job,” he said.
Paccione wants to encourage others in her situation to feel better about their prospects.
“There’s so much hope out there,” she said happily. “Life can change in an instant!”