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“Dan is actually a wonderful example of what you can achieve


CindyA

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“Dan is actually a wonderful example of what you can achieve with what’s called personalized medicine,” Dr. Camidge said.

Portraits of the most blissful year of Dan Powell’s life rest on the mantel and hang on the walls of his living room.

On top of the world at 35, Powell married the girl of his dreams, became a father and bought the white Colonial with refinished hardwoods on a quiet street near the base of Paris Mountain.

He loved his job — or really, jobs — as Greenville County air-quality director and city planner for Fountain Inn. He wrote grants that brought in millions of dollars to revitalize Fountain Inn, build safe trails and start clean-air programs.

Words scripted on another living room wall — “With God all things are possible.” — give a glimpse into the year that followed.

Powell — a health-conscious, fit, nonsmoker — was diagnosed with Stage 4 lung cancer on Jan. 23.

He was told he had nine to 12 months to live. Then doctors discovered a new drug that could save, or at least prolong, his life.

But it was costly, $9,600 a month. By then Powell was on a fixed income, and insurance wouldn’t cover everything.

So when he needed help most, the man who made a career writing grants for others scrawled one more grant request on a sheet of notebook paper. This time, he hoped a grant would save his own life.

And in efficiency never seen in government grants, he was approved the next day.

The journey begins

It started with shortness of breath on an early December afternoon, as Powell walked along a path that Fountain Inn planned to turn into a walking trail.

He’d worked for years to bring money to the close-knit community to expand its trails and improve its downtown so more visitors would discover the city he helped revitalize.

Breathing difficulties were nothing new to Powell. He had wrestled with childhood asthma, and he knew how to manage the disease.

In fact, his asthma led him to an interest in air quality. As director of Keep Greenville County Beautiful, city planner for Fountain Inn and director of special projects for Greenville County’s planning department, he sought to keep Greenville’s air clean to help others breathe easier.

He helped bring the Breathe Better Air at School anti-idling program to Greenville County Schools. He wrote a grant to build sidewalks and trails through Safe Routes to School, and another to establish the southern tip of the Greenville Health System Swamp Rabbit Trail through Fountain Inn.

Powell lives to help others. He does it constantly, reflexively, sometimes overextending himself in the process.

He thought his breathing problems might be stress-related due to long hours and big changes. It had been a monumental eight months since he married Rebecca, moved into their new home and began the process to adopt her 6-year-old son, Davis.

He had passed his annual physical with flying colors in November, but his breathing problems persisted, and he came down with back-to-back colds, developed minor heartburn, a slight stubborn cough and began to tire quickly. He thought he might have pneumonia.

The idea of pneumonia alarmed him since his grandfather had died from it. So he made another appointment.

This time the doctor ordered a chest X-ray, which did show an infection. He went to a pulmonologist who took a bronchial scope on Martin Luther King Jr. Day.

The results came back that Thursday in January.

“It seems like forever, and we’re waiting on the doctor to show up,” he said. “He walks in the room. He sits down on the stool and he puts his hand on my knee, his head’s down, and he says, ‘You’ve got Stage 4 lung cancer.’ ”

Powell turned pale, needed air, just needed space. He stepped into the hall, dizzy, he nearly collapsed, sat down. Nurses brought water.

Then, he gathered himself.

“I got back up and walked into the office and said, ‘I want to go to the hospital.’ ”

No, not next week, he told his doctor. “I said, ‘Now.’ ”

Hours later, he met his oncologist and lay in a hospital bed, surrounded by family and friends.

Images showed cancer pockets that “looked like a Christmas tree,” Powell said. Cells had spread to both lungs, his blood, lymph nodes and bones.

Doctors said they could treat it, but there was no cure. His cancer was too widespread for surgery.

On the same day he was diagnosed, Powell started chemotherapy.

A moment of change

It’s natural to question while you toss and turn in a hospital room as buzzers beep and nurses check in, and that night, Powell couldn’t sleep.

His mind raced. He knew lung cancer had been tied to air pollution, and now he believed his cancer could be a result. After all, he’d grown up near a coal plant and already had asthma.

Last October, the World Health Organization declared air pollution to be a carcinogen and its link to lung cancer and possibly bladder cancer was unmistakable.

Powell, the air quality champion, couldn’t believe he now had lung cancer.

His turmoil reached an apex that morning, and he still chokes up when he recalls the moment his outlook changed.

A custodian came into the room, and while cleaning up, she asked if he was all right. No, he said.

He explained his cancer, and she told him he was young and not to believe the odds.

“I’ve seen people walk out of here with Stage 4 lung cancer and have amazing results,” she told him.

“She literally got down on her hands and knees … and she held my hands and said, ‘It’s going to be all right,’ ” Powell said. “She prayed with me and said, you’re going to be healed. God wants to keep you around.”

Her words sunk in.

Then the planner, the analyzer, took over. Powell asked for a second opinion and another oncologist to give him better news.

Enter Dr. Fahd Quddus, who wouldn’t give him a life-expectancy timeline, but gave hope that his cancer might be linked to a specific mutation in his genes that the medical world had just discovered in 2007.

The test results would take a month. Chemo continued.

Finding his way

Bound to a cane, a walker or a wheelchair, his brown hair gone from chemo and his already thin frame 25 pounds lighter, Powell waited.

The news came as snow enveloped Greenville on a mid-February afternoon.

Powell had ALK-positive (anaplastic lymphoma kinase) non-small-cell lung cancer, which is found in only 4 percent of lung cancer patients, said Dr. Ross Camidge, an oncologist at the University of Colorado Cancer Center and a leading researcher in lung cancer treatments for patients with specific gene mutations.

When the ALK gene mutation was discovered in 2007, a drug already in clinical trial was discovered to be an ALK inhibitor, Camidge said.

Camidge is one of the group of researchers who discovered the drug, called Xalkori, which blocks cancer cells from spreading and can lead to remission.

Before Xalkori, lung cancer patients faced the same basic cancer treatments, he said. But now patients can be screened for the ALK gene and then treated individually, he said.

Camidge called it a perfect storm of individualized care, giving specific treatments to groups of people who were likely to benefit from it the most.

There’s a debate brewing about whether the cost to research, test and bring drugs like these to market is worth the price, since the drug only works on specialized types of cancer found in just 4 percent of lung cancer patients.

To those with cancer, it’s not much of a debate. Powell needed to find a way to pay the $115,000 cost per year to buy it. Though he had insurance, it wouldn’t cover everything.

Too weak to sit at a computer to fill out the request for assistance, Powell hand-wrote his request to the national nonprofit Good Days from Chronic Disease Fund, which provides assistance with ongoing medical costs to patients in need.

He found out the next day he was approved.

A beautiful image

With belt cinched tight and short-sleeved dress shirt hanging loose from his frame, Powell sunk into an oversized armchair that enveloped him in his fan-cooled living room.

He shook the rectangular white Xalkori container filled with 250 milligram miracles.

“This medicine right here is what’s saving my life,” Powell said.

Quddus told Powell the medicine could contain the cancer, at least for a time, but it’s not billed as a cure.

Powell wanted a cure. Another opinion. He called Pfizer, which makes the drug. He traveled to Yale Medical Center to speak with another leading lung cancer researcher. He connected with a mentor and four-year lung cancer survivor at a support group called Lungevity. You’re on track, they all said. Trust the medicine. Let it work.

Two weeks later, he had another CT scan. Quddus called him back to his office to look at the images. Two nurses sat in the room, both in tears.

“I was like, what’s going on? And they were just wiping tears away, and he was in big smiles and he said, ‘Look at this.’ ”

“When you looked at the two scans of my lungs, there was like a two-thirds reduction in tumors, from going all over the place to almost gone.”

His cancer was in remission. He left the office and drove straight to a car dealership to buy a Nissan Leaf fully electric car.

Sharing his story

Now two months have passed. Powell celebrated his 36th birthday with a cake in the hospital, and celebrated again when scans showed the cancer gone from all but his lungs, and the cells in his lungs are tiny.

He talks about watching his son graduate from college. He hopes to qualify for a new drug, Zykadia, which was approved two weeks ago and is stronger than his current drug.

“Dan is actually a wonderful example of what you can achieve with what’s called personalized medicine,” Camidge said. “If you know what’s driving somebody’s cancer, and you give a drug targeted to that abnormality that’s driving their cancer, then the kind of response that Dan’s got is actually typical.”

The cancer could return, Camidge said.

“You create an environment that is effectively suppressing the cancer very successfully, but like any environment, the cancer will adapt to it,” Camidge said. “At some point in the future, parts of his cancer will figure a way around it and start to grow.”

As inhibitor drugs prolong lives, researchers scramble to build the next generation of drugs and race to find a cure, Camidge said.

Powell wants to share his story. He’s recorded YouTube videos, he spoke at a Moonlight 5K race and traveled to Washington, D.C., to a Lungevity national conference.

In June, Good Days from CDF will come to record his story to share with other patients seeking help with medication payments, said Peggy Foley, Good Days’ senior director of marketing.

“The connection between the possibility of the environment, we don’t know, playing a role in him getting this disease, and the fact that he’s been so vocal in wanting to address it … we just think it was a really good story to increase awareness,” Foley said.

Powell has thrown himself into new endeavors. He’s trying to expand the number of electric vehicle charging stations in Greenville. He’s raising awareness for lung cancer research.

He will serve as grand marshal for the Relay for Life on Friday at J.L. Mann High School.

For Powell, it’s a matter of life or death.

“This buys me time,” he said, picking up the miracle pillbox again. “Some people go a year. Some people go six years, but I need to know what’s next after this.”

Contact reporter Nathaniel Cary at 864-298-4272 or follow @nathanielcary on Twitter.

http://www.greenvilleonline.com/story/n ... r/9375813/

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