Thriving, thanks to research-backed advances
in Ewing sarcoma care
Nick during treatment; Nick at graduation with a Doctorate in Physical Therapy
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Almost 20 years after his treatment, Nick Wilson, his parents, and his oncologist look back on a groundbreaking COG research study he took part in that led to a change in the standard of care for Ewing sarcoma, a rare and aggressive form of bone and soft-tissue cancer.
PHOTOS COURTESY OF NICK WILSON
Part way through sixth grade, some serious pain in Nick Wilson’s lower back started slowing him down. At first, his family doctor didn’t think it was anything to worry about and prescribed exercise. But the pain kept coming and going and getting worse. It became hard to sleep at night, or walk, or even stand for more than a few minutes at a time.
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When he finally went in for an MRI, the Wilsons got a phone call with a cryptic update. The results didn’t look good, but the clinic couldn’t say more—only to come pick up a packet of paperwork and a disc of images to take to Seattle Children’s Hospital, where they had already made Nick an appointment for the next day.
“When I picked up the envelope, it wasn’t sealed, so I pulled over on my way home and read through the paperwork,” Nick’s mother, Barb Wilson, recalls. “I spent the next day wishing I could unsee the words ‘sarcoma or lymphoma’.”
After more tests the next day, Nick listened hard but hardly heard a thing in the meeting where a doctor he had barely met explained that a baseball-sized knot of malignant cells called a Ewing sarcoma was growing on a bone at the base of his spine: the S2 sacral vertebra. He would need several months of chemotherapy to shrink the tumor, as well as surgery to remove any remnants of it, and radiation for good measure.
Still dazed as he and his parents left Seattle Children’s and headed out to lunch, Nick wasn’t sure if he fully understood what was happening.
“So, they’re saying I have cancer?” he asked. “What’s going on?”
When he finally went in for an MRI, the Wilsons got a phone call with a cryptic update. The results didn’t look good, but the clinic couldn’t say more—only to come pick up a packet of paperwork and a disc of images to take to Seattle Children’s Hospital, where they had already made Nick an appointment for the next day.
“When I picked up the envelope, it wasn’t sealed, so I pulled over on my way home and read through the paperwork,” Nick’s mother, Barb Wilson, recalls. “I spent the next day wishing I could unsee the words ‘sarcoma or lymphoma’.”
After more tests the next day, Nick listened hard but hardly heard a thing in the meeting where a doctor he had barely met explained that a baseball-sized knot of malignant cells called a Ewing sarcoma was growing on a bone at the base of his spine: the S2 sacral vertebra. He would need several months of chemotherapy to shrink the tumor, as well as surgery to remove any remnants of it, and radiation for good measure.
Still dazed as he and his parents left Seattle Children’s and headed out to lunch, Nick wasn’t sure if he fully understood what was happening.
“So, they’re saying I have cancer?” he asked. “What’s going on?”
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Seeking lower recurrence rates for Ewing sarcoma
Ewing sarcoma is a rare bone or soft-tissue cancer that primarily occurs in children, teens, and young adults. It’s one of the most common forms of bone cancer in people under 18. It’s also rare, affecting just 250 or so children a year and accounting for about 2 percent of all childhood cancers. In the early 2000s, the standard of care for Ewing sarcoma called for chemotherapy every three weeks, but Nick had the option to join a Children’s Oncology Group (COG) clinical trial and potentially get chemo every two weeks instead. |
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The goal: to see if “interval-compressed” or every two week chemotherapy would reduce the risk of recurrence, which was about 40 percent, says Doug Hawkins, MD, Nick’s oncologist, who oversaw this and other COG studies involving Seattle Children’s patients.
Researchers knew that shorter intervals between treatments had improved outcome for certain types of cancer in adults, but did not know if it would work for Ewing sarcoma.
“This was the first time where we had really tried to look at this compression of treatment in pediatric cancer,” Dr. Hawkins explained.
Researchers knew that shorter intervals between treatments had improved outcome for certain types of cancer in adults, but did not know if it would work for Ewing sarcoma.
“This was the first time where we had really tried to look at this compression of treatment in pediatric cancer,” Dr. Hawkins explained.
Nick shaving his dad's head to match his own.
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The Wilsons had a big decision to make. And not much time. Nick would need to start chemotherapy quickly.
Overwhelmed by the cancer diagnosis alone, Nick’s parents had some reservations about enrolling in a clinical trial. Dr. Hawkins made sure they knew their son would get excellent care regardless of which course of treatment they chose. For Nick, it felt like a no-brainer. “The 12-year-old me was like, ‘I will get through it faster if I go every two weeks instead of every three. That’s less of my life I have to be doing this.” |
From kid to pediatric cancer research participant
Nick went in for his first of 14 chemotherapy infusions in mid-May 2005. Each treatment, two weeks apart, would require a hospital stay of two to five days, alternating between two drug combinations.
Treatment took a punishing toll, with grueling side effects: severe lethargy and headaches, gastrointestinal infections and mouth sores so painful, it became hard to swallow. He lost so much weight, he had to get a nasogastric (NG) feeding tube inserted through his nose and threaded into his stomach. It was the only way he could get nutrients and fluids for months.
Nick’s tumor responded well to chemotherapy. After about four months, it had shrunk enough for it to be surgically removed. Chemo continued as he healed, and again during four weeks of radiation, once every weekday. In all, his treatment lasted about nine months. It would have taken almost a year if he had gotten treatment every three weeks.
Nick went in for his first of 14 chemotherapy infusions in mid-May 2005. Each treatment, two weeks apart, would require a hospital stay of two to five days, alternating between two drug combinations.
Treatment took a punishing toll, with grueling side effects: severe lethargy and headaches, gastrointestinal infections and mouth sores so painful, it became hard to swallow. He lost so much weight, he had to get a nasogastric (NG) feeding tube inserted through his nose and threaded into his stomach. It was the only way he could get nutrients and fluids for months.
Nick’s tumor responded well to chemotherapy. After about four months, it had shrunk enough for it to be surgically removed. Chemo continued as he healed, and again during four weeks of radiation, once every weekday. In all, his treatment lasted about nine months. It would have taken almost a year if he had gotten treatment every three weeks.
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Shorter intervals, higher long-term survival odds
Not long after Nick wrapped up treatment in February 2006, promising data started coming in from the first wave of patients, who had enrolled in the spring of 2001. With treatment every two weeks instead of three, fewer children were experiencing a recurrence. “Ten years after diagnosis … the people who got chemotherapy every two weeks, like Nick, had a 70 percent chance of not having a recurrence vs. the people who got the standard treatment interval; they had a 61 percent chance of not having a recurrence,” Dr. Hawkins says. |
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The study led to a change in the international standard of treatment for Ewing sarcoma, which is now chemotherapy every two weeks.
Not all studies produce results that lead so directly to better treatments, but they still play an important role in the progress researchers make toward discovering new ways to treat cancer. In the years after the interval-compression study, for example, COG researchers tested a new drug in hopes of better targeting Ewing sarcoma. While the drug did not improve outcomes, it did help researchers learn more about distinct genetic subtypes of what they used to think was a single type of cancer.
“They all look like Ewing sarcoma under the microscope but behave differently based on some differences in the underlying genetics,” Dr. Hawkins explained. “The more we learn about new subtypes of cancer like these, the closer we get to developing treatment plans that target cancers more precisely.”
“They all look like Ewing sarcoma under the microscope but behave differently based on some differences in the underlying genetics,” Dr. Hawkins explained. “The more we learn about new subtypes of cancer like these, the closer we get to developing treatment plans that target cancers more precisely.”
“Classic” Ewing sarcoma vs. genetically different subtypes
Nick’s cancer is now characterized as “classic Ewing sarcoma,” the more treatable type with the most common rearrangement of chromosomes. Others with different genetic mutations are more resistant to chemotherapy.
“We don’t have a way of modifying their therapy yet … but there are targeted treatments in development” based on the precise chromosomal rearrangements,” Dr. Hawkins says.
Investing in research like this on specific variations of cancer is one of COG’s leading priorities. Once scientists know that different subtypes of cancer respond differently, they learn more about how and why that’s true.
Government funding for this kind of research is limited. That’s where gifts from COG Foundation donors make a big difference. Over the last few decades, donors have supported several studies revealing new information about the biology of certain cancers and the promise of targeted genetic therapies.
Investing in research like this on specific variations of cancer is one of COG’s leading priorities. Once scientists know that different subtypes of cancer respond differently, they learn more about how and why that’s true.
Government funding for this kind of research is limited. That’s where gifts from COG Foundation donors make a big difference. Over the last few decades, donors have supported several studies revealing new information about the biology of certain cancers and the promise of targeted genetic therapies.
Nick and his parents celebrate his Doctorate in Physical Therapy.
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Paying it forward by helping others heal
Now 31, Nick has never had a recurrence. After he finished treatment, it took a lot of physical therapy to rebuild his strength and balance. He wasn’t a big fan at the time, but later developed a deep appreciation for the crucial role physical therapy played in his overall recovery. He’s paying that forward every day now, working as a physical therapist and relishing the role he gets to play with each patient’s unique road to recovery. |
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“Surviving cancer has given me a sense of empathy for people who are going through chronic or life-threatening illnesses,” Nick says. “In a lot of ways, I know what it’s like to be in their shoes. And it feels really meaningful to be able to help them heal.” Nick started cycling about 10 years ago — a lot. He’s ridden the 206-mile Seattle-to-Portland Bicycle Classic five times — three times with his dad. His latest feat: the RAMROD, 154 miles around Mount Rainier, climbing 10,000 feet in elevation over two mountain passes. Each finish line he crosses deepens his gratitude for every challenge he's overcome. |
Nick & his dad at the finish of the Seattle-to-Portland Bicycle Classic in 2015.
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