EDITOR’S NOTE: Two years ago, Lindsey Motley, a local aspiring photographer, young mother and wife was stunned to learn she had colon cancer. The Greenville News has been profiling her heroic battle and and promote cancer awareness in an ongoing #prayersforlindsey series.
A clinical trial is a shot in the dark.
It might help fight the disease. Then again, it might not.
Lindsey Motley knew that when she signed on to a trial of an experimental drug for her colon cancer.
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After the first few treatments, it looked like the MGD007 was working, giving the young Greenville woman and her husband, Jay, a few precious weeks of hope that it might be the answer to their prayers.
But as Lindsey feared, her latest scans confirmed that the enemy was on the march once again, growing in her lungs, pelvis and liver.
She was forced to leave the trial and start searching for another.
“We’re trying to figure things out as far as what our next steps will be,” she said. “At this point, we feel pretty desperate.”
Just more than two years ago at the age of 26, Lindsey was hit with the staggering news that she had stage 3 colon cancer.
Seventeen weeks pregnant with her first child at the time, she endured chemotherapy, radiation and high-risk surgery to remove the tumor and a foot of her colon.
And for a while, things were looking up.
But in March 2014, tests showed the cancer was spreading, which ushered in months of more chemo, radiation and surgery, including an operation to remove half her liver.
When the cancer continued to grow, she set her hopes on the MGD007, an experimental drug being offered at Duke Cancer Center in Durham.
In recent weeks, though, as Lindsey’s pain intensified, she couldn’t shake the feeling that it wasn’t working. She found herself hunting for a new trial.
“We’re trying to find something new as soon as possible,” she said last month. “The hope is still there.”
‘Not just me’
A few weeks ago, a lead on a new treatment protocol fell through. Since most of these trials require participants to wait 28 days from their last treatment to join, and she’d recently had radiation to relieve the pain from the cancer in her bones, Lindsey wasn’t accepted.
“There are other patients just like me out there who want it just as bad as I do, so I have to keep that in mind,” she said with her characteristic stoicism. “It’s not just me going through this.”
More than 132,000 Americans will be diagnosed with colon cancer this year, according to the American Cancer Society. Nearly 50,000 will die from it.
How someone so young developed a form of cancer that typically strikes people 50 and older is a question the doctors can’t answer.
In the meantime, Lindsey and Jay are awaiting results of a study underway at Mount Sinai Cancer Center in New York. There, scientists are trying to create a fruit fly with Lindsey’s specific tumor so they can then determine to which drugs the cancer responds.
“They can’t just give me any drugs to see if they will work. We don’t have time for that,” she said. “If they have something that gives a response, we will have an opportunity to do that too.”
But it probably will be months before they know anything.
Another drug recently approved by the FDA also offers a glimmer of hope. It’s similar to a drug she’s already had so she worries that it may not be as effective for her.
“Ideally, we’re looking for a trial that is Drug A plus Drug B because one drug plus another is always a better option,” she said. “But we can’t be too picky either.”
Leap of faith
Between the tests and the treatments, Lindsey and Jay do all they can to live their lives.
They dote on their little girl, Lilla, who recently gave up her pacifier as she turned 2. They enjoy precious time with family and friends, and they take short trips to escape now and then.
“I did a girls’ trip to Orange Beach in Alabama. And I’ve been redoing the house room by room, which is fun for me,” she said.
“We also went to St. Barts for a week. It was like paradise,” she added. “And it was great to spend time just one-on-one with each other away from all the distractions.”
Lindsey has something else positive to focus on as well: a canopied boardwalk overlooking the Reedy River falls in a lovely wooded area of Cancer Survivors Park that will be called Lindsey’s Leap of Faith.
Her dad, Tom Bates, has launched a campaign to raise $250,000 to build it.
“I’m sort of a daddy on a mission,” he said. “Everybody in the family from Lindsey’s mother to her step-mother to her sister, aunts, uncles, in-laws and certainly friends and other relatives are all on board. There isn’t anybody who hasn’t said ‘I’m in.’
“She has touched a lot of lives in this battle she’s had,” he added. “It’s a labor of love.”
Lindsey’s dad was asked by the Cancer Survivors Park Alliance to join its capital campaign committee. Bates, who lost his mother to ovarian cancer when he was 10 and his father to lymphoma when he was 32, was all for it.
“We’re all touched by cancer directly or indirectly. I’ve experienced it as a child with a parent suffering from cancer and now as a parent with a child,” he said. “This was an opportunity to help the park and honor Lindsey and her courageous battle.”
“Tom is living this journey with Lindsey,” said Kay Roper, executive director of the alliance. “He met me at the Lindsey’s Leap of Faith area and got tears in his eyes, and he said, ‘I want to claim this for Lindsey.’”
A place to reflect
Lindsey can’t wait for her Leap of Faith to open next spring.
“It will be a great spot for us to hang out and find some peace,” she said. “And it will be a great place for survivors, whether they be the actual patient or family members, to have a place that is meditative or peaceful. A place that you can reflect or be sad or be happy. It will be a great space dedicated to that.”
The park, in downtown Greenville bordering Falls Park off Cleveland Street, will feature gardens with benches, a gathering space, a survivor bell with a healing tone, sculpture, a waterfall and an education center, Roper said.
The land was donated by the Natural Land Trust and Renewable Water Resources. Once fully completed in early 2017, the city of Greenville will maintain it.
About $5 million has been raised toward the $7.5 million project so far, she said.
Because it will be there forever, it will inspire and comfort future generations, Bates said.
“Even when we’re all gone, Lilla’s children’s children will be able to go,” he said. “And that would be wonderful.”
Lindsey also is the latest cancer warrior to be profiled in the Alliance’s Sunday Survivor Series, which features local residents’ stories of survival, Roper said.
“Our organization is about touching all survivors, to raise awareness of survivorship,” she said. “Cancer shows no mercy or preference. It touches every race, age. It has no boundaries. These people are all survivors.
“Lindsey and Jay and Lilla just absolutely epitomize that survivor story.”
In the meantime, Lindsey’s looking for ways to boost her immune system through an organic diet, supplements, and meditation.
“We’re looking into all types of things because we want my body to be able to fight as best as it can,” she said. “We just want to be able to buy time until that next thing comes out. Hopefully, it will be around the corner.”
Just last week, a trial of a new drug called Regorafenib With PF-03446962, also called the REGAL study, became available at Duke and Lindsey was accepted. She had her first dose on Wednesday.
Though excited to be starting a new trial, she was anxious as well. About potential side effects, the pain, her family and, of course, the success of the treatment.
Like the other trials, it’s another shot in the dark.
Colon cancer is the third most common cancer in the United States and the second leading cause of cancer death in men and women combined. It affects men and women of all racial and ethnic groups, and is most often found in people age 50 years or older.
Your risk of getting colorectal cancer increases as you get older. More than 90 percent of cases occur in people who are 50 years old or older. Other risk factors include having:
▪ Inflammatory bowel disease, Crohn’s disease, or ulcerative colitis
▪ A personal or family history of colorectal cancer or colorectal polyps
▪ Lifestyle factors that might contribute to an increased risk of colorectal cancer include:
▪ Lack of regular physical activity
▪ Low fruit and vegetable intake
▪ A low-fiber and high-fat diet
▪ Overweight and obesity
▪ Alcohol consumption
▪ Tobacco use
The Colon Club: colonclub.com
Colon Cancer Alliance: ccalliance.org
The American Cancer Society: www.cancer.org
ACS colon cancer page: www.cancer.org/cancer/colonandrectumcancer/index
National Cancer Institute: www.cancer.gov/types/colorectal
NCI Cancer Research Blog: www.cancer.gov/news-events/cancer-currents-blog
U.S. Centers for Disease Control and Prevention colon cancer page: www.cdc.gov/cancer/colorectal/index.htm