Smoker’s Disease No More, Lung Cancer Gets New Therapies

Pink makes Kaye Paterson see red. The official color of breast cancer, pink is deployed on ribbons, bracelets and even NFL uniforms to steer attention -- and research money -- to the disease. For Paterson, who has far deadlier lung cancer, so much pink can be hard to accept.

“I get mad pretty easily about the funding,” said Paterson, 34, who was diagnosed in 2011. “How come in November everything doesn’t turn white for lung cancer?”

The disease killed 1.6 million people globally in 2012, more than the next two most fatal cancers combined. Yet lung cancer lags behind other forms of cancer in research and awareness, largely because many people feel it’s self-inflicted: 80 percent get the disease from smoking.

Less money for research means the high fatality rate persists. So fewer patients live long enough to participate in studies, and fewer survivors are available to mobilize and lobby for more funding.

That may finally be changing as advocates seek to raise awareness of the disease among women and new treatments improve life expectancy for patients with specific genetic mutations -- as many as a third of lung cancer sufferers. On the horizon is a separate class of drugs that stimulate the immune system to fight the cancer.

Such long-awaited scientific successes are attracting new researchers and funding. Groups like the American Lung Association are paying greater attention to the disease, too, and previously reluctant corporate sponsors have started to join the fight.

“It’s not the sexy disease,” said Harold Wimmer, president of the American Lung Association. “We really haven’t put the spotlight on lung cancer.”

The U.S. National Institutes of Health allocated $885 million to lung cancer research from 2010 to 2013, less than a third of what was targeted for breast cancer.

Pink Ribbons

The Susan G. Komen Breast Cancer Foundation has spearheaded the fight against that disease, handing out pink ribbons since 1991 and last year raising $338 million from donors and dozens of corporate sponsors. Due in part to its efforts, 89 percent of breast cancer patients survive at least five years, up from 75 percent in 1980.

In contrast, lung cancer remains the deadliest kind of cancer and the five-year survival rate is about 18 percent, with only modest improvements in the last 20 years. For those in stage IV, which means it has spread to other organs, five-year survival is 1 percent.

The high fatality rate leads to what scientists call therapeutic nihilism: Doctors, convinced they can’t help patients, don’t prescribe treatment and instead recommend they prepare for death.

“Every oncologist has had lung cancer patients come in saying that their other doctor told them to go home and get their affairs in order,” said Joan Schiller, chief of medical oncology at the University of Texas Southwestern Medical Center in Dallas.

To draw donors, the Lung Association has taken a page from the breast cancer movement and is painting lung cancer as a women’s disease. Its Lung Force campaign, debuted in May, stresses that it’s the “No. 1 cancer killer of women,” and the association has hired female celebrities like Valerie Harper -- a survivor -- and the singer Jewel to boost awareness.

AIDS Stigma

From 1975 to 2010, lung cancer diagnosis doubled in American women, according to the National Cancer Institute. The increase is a result of growing rates of smoking among women in the 1960s. In the U.S., about 37 women in 100,000 will die from lung cancer, compared to 22 breast cancer deaths.

“We’re dealing with more women, more white-collar people, who are more willing to get out there,” Schiller said. “Twenty years ago, they would just accept it. It was their fault. These people now are more angry.”

As with AIDS, the stigma surrounding the disease may lessen as effective therapies are developed. When there was no treatment for HIV and AIDS, patients were shunned, said Wayne Steward, an associate psychology professor at University of California, San Francisco.

“Public perceptions changed radically with the advent of anti-retroviral” drugs two decades ago, Steward said. “As medications scale up, attitudes start to change.”

One reason lung cancer is so deadly is that it’s difficult to diagnose. It is most commonly detected in stage IV, when it’s hardest to treat, because unlike breast or skin cancer there’s no visible clue. Many symptoms, such as coughing and difficulty breathing, are part of life for smokers.

‘You Smoked?’

Kaye Paterson first noticed a persistent cough in 2007. She was 27, had never smoked, and was a former high school soccer and hockey player. She didn’t suspect cancer, and neither did her doctors, who first diagnosed her problem as acid reflux. Finally, in June 2011, a needle biopsy through her side revealed Paterson had stage IV non-small cell cancer -- a broad classification that covers about 85 percent of all cases -- in both lungs. It couldn’t be removed through surgery.

“I never in a hundred thousand million years thought it was cancer,” said Paterson, who lives outside Pittsburgh and works as a case manager for children with disabilities for Allegheny County, Pennsylvania. “I’m not 67-plus. I’m not a smoker. I didn’t grow up in a smoking home.”

As Paterson researched her disease, what she found scared her. She got second, third and fourth opinions, then began a difficult treatment regimen. She was prepared for the fatigue and nausea. She wasn’t prepared for the questions about smoking that come as soon as she mentions she has lung cancer.

“Everyone says, ‘I didn’t know you smoked,’” Paterson said. “Every single time.”

Accusing victims for causing their disease largely stems from public service campaigns that demonized smoking, starting in the 1970s. Because of the stigma, doctors may be less compassionate, and patients can blame themselves and don’t aggressively seek treatment. Studies show that lung cancer sufferers have higher levels of depression and less social support than other cancer patients.

‘Your Fault’

Judith Colman, 73, is a former smoker from Tewksbury, Massachusetts, first diagnosed with lung cancer in 1988. Though she quit smoking immediately after her diagnosis, Colman was plagued by guilt. She says she was heartened when an oncologist who, after learning she was raised in a Boston neighborhood surrounded by factories, said air pollution might have been the cause.

Colman couldn’t find a support group for lung cancer survivors, so she instead attended breast cancer groups. Frictions soon arose.

“One girl said ‘Our breast cancer wasn’t our fault; your lung cancer was your fault,’” she said. “I was speechless.”

The prognosis for lung cancer patients has improved in the past decade because of advances in genetic testing, which have resulted in medicines that target anomalies in specific cells. Among the first discoveries was that mutations in a protein called EGFR were present in as many as a third of non-small cell lung cancers.

Ten years ago, drugs were introduced that slowed tumor progression by blocking the growth signals that EGFR transmits to cancer cells. For patients with EGFR mutations, the new drugs -- Tarceva, from Roche Holding AG, and Iressa, from AstraZeneca Plc -- have had a dramatic effect, said Konstantin Dragnev, a professor of medicine at Dartmouth College who specializes in the disease.

The drugs “changed how we think about lung cancer,” Dragnev said. Gains in life expectancy are no longer coming in increments of “one or two months. We’re talking about improvement measured in one or two years.”

$140,000 a Year

Missy Peterson, 47, a part-time kindergarten teacher in Huntington Beach, California, was diagnosed with stage IV lung cancer in 2009, after she had lost her voice and suffered intense chest pains. Her prognosis was grim: the cancer had spread to her brain, and was inoperable.

“I had never heard of anyone surviving lung cancer,” she said. “My husband was distraught. I just took it on.”

Radiation, chemotherapy and Avastin -- a drug that blocks blood supply to tumors -- kept the disease at bay for two years. But in 2010 it spread again, this time to her hip. Finally, a biopsy in 2012 revealed she had a mutation that affects about 4 percent of lung cancer patients. Her oncologist prescribed crizotinib, a drug developed by Pfizer Inc. and sold as Xalkori.

“That’s the one that works,” she said. Today, after 30 months of treatment, “there’s no evidence of cancer. It’s amazing.”

The drug caused shimmering spots and streaks in her vision, and it’s expensive: about $200 a pill, or more than $140,000 a year. After struggling to find coverage, Peterson now receives Xalkori for free from Pfizer.

Peterson is upset that her diagnosis took so long. If the mutation had been discovered earlier, her treatment might have started with Xalkori. That would have allowed her to avoid the radiation, which left with her with significant heart problems.

The hospital “didn’t have genomic testing -- that was incredibly frustrating that it existed and we didn’t know about it,” she said.

The new drugs, though, still aren’t an option for most patients. The majority of lung cancers have mutations that fall into tiny subsets of less than 2 percent of the total, a consequence of the many carcinogens in tobacco. Drugs haven’t been developed to fight them.

For patients like Kaye Paterson, whose cancer doesn’t have a tailored drug, treatment sometimes comes down to simple trial and error.

After an unsuccessful experiment with Tarceva, Paterson’s oncologists at the University of Pittsburgh Medical Center began to see results with a combination of chemotherapy and Avastin. She eventually went through 36 cycles of the treatment over two-and-a-half years. To receive the drug intravenously, a port was surgically installed in her chest that directly connected to a blood vessel.

Then in April, her cough reappeared and she began to tire easily. A scan revealed a new tumor. The growths in her chest can ache or jolt her with pain.

Jabbing Finger

“It feels like someone is jabbing their finger in your ribs,” Paterson said. “When it comes, it’s very quickly, and makes me jerk.”

To ease the discomfort, she relies on Vicodin pain pills, and heating pads for up to eight hours a day, often while watching her beloved Pittsburgh Penguins hockey team.

Her work has accommodated her illness, and as a state employee she’s eligible for disability insurance, though she racked up more than $10,000 in co-pays before she qualified for the state aid.

After the failure of chemotherapy, Paterson went without treatment until late November, when she entered a clinical trial combining two immune therapy treatments: pembrolizumab, sold as Keytruda by Merck & Co., and ipilimumab, sold as Yervoy by Bristol-Myers Squibb Co.

Both drugs target proteins that inhibit T-cells, the white blood cells that attack infection and disease. So far the drugs have only been approved for late-stage metastatic melanoma.

Researchers now believe it and other immune therapy drugs can treat a wide range of cancers. The hope is that they can train the body’s T-cells to ward off the cancer permanently.

While Paterson waits to see the results of the latest treatment regimen, she’s spending time with her friends and family -- and trying not to think about the future.

“If I focus on that, I won’t be able to enjoy the stuff I do have and the time I have with the people I care about,” she said. “I know what the outcome is likely going to be.”

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