Ten years of Miles for Myeloma

September 18, 2014

Ten years ago, multiple myeloma was a vastly different disease than it is now.

Make no mistake: There's still no cure. But treatment and management of this rare and little-known form of blood cancer have seen significant advances, resulting in improvement to patients’ life expectancy and quality of life.

Rafat Abonour and his fellow riders catch their breath after the 2013 cycling event. | Photo By IU Simon Cancer Center

Part of that improvement can be attributed to the work of Rafat Abonour, M.D., and the volunteers who created the popular fundraiser known as Miles for Myeloma. Since it was first held in 2005, Miles for Myeloma has raised more than $2.4 million to be used by Dr. Abonour and other researchers at the Indiana University Melvin and Bren Simon Cancer Center in Indianapolis.

Dr. Abonour, an oncologist, works tirelessly to find a cure for myeloma, which affects about 20,000 people every year, but he also happens to enjoy running and cycling. A decade ago, he and some of his patients were looking for a way to boost funding for myeloma research at the IU Simon Cancer Center.

Initially, they floated the idea of having a standard 5K run/walk, “but there are tons of those," Abonour said. "I thought it would be better to go around to different communities and spread the word” about myeloma.

He also wanted to reciprocate all the miles his patients traveled across the state of Indiana for their appointments with him, so he set off on a two-day odyssey that took him from Carmel to Marion via bicycle, then from Marion to Fort Wayne on foot. His fundraising goal was a modest $25,000; he brought in a total of $130,000 and was recognized in Sports Illustrated for his efforts.

Amber Senseny, senior associate director of development at the IU Simon Cancer Center, has been involved in Miles for Myeloma since its inception. She said the impact of Dr. Abonour’s efforts -- both in the lab and on Hoosier highways and byways -- transcends fundraising.

“He recognized that these patients have no community,” she said. “If you get diagnosed with breast cancer, you have tons of people to talk to. But (with myeloma), they’re scared; they have no one to talk to.

"It hurts Dr. Abonour’s heart to see what his patients endure. The treatments are difficult and arduous. Miles for Myeloma is a way for him to say, ‘I am with you because I believe in a better future for all of us.’”

Ten years and more than 1,700 miles later, Dr. Abonour is once again ready to hit the road. This time, he’ll be cycling only. Miles for Myeloma has steadily grown in participation to the point where support vehicles and police escorts are needed. This  provides a great way for patients who are physically unable to run or cycle to help out.

Myron Gill, 74, of Pittsboro, Ind., was diagnosed with multiple myeloma in 1999 and has been on the Miles for Myeloma organizing committee since its inaugural event in 2005. This year, he’ll be driving a SAG (support and gear) vehicle along the route, which takes riders from Indianapolis to Spencer, Ind., on Oct. 3, Spencer  to Terre Haute on Oct. 4, and then Terre Haute back to Indianapolis on Oct. 5.

“We follow the riders or go in front of them if there’s traffic,” Gill said. “We sit in the vehicle and make sure everybody is doing OK. If somebody falls behind we will pick them up.”

The cause or causes of multiple myeloma are unknown, but people who contract the disorder are typically over age 65. Other risk factors include being male, African American and related to someone already affected by myeloma. The disease is akin to leukemia and lymphoma in that it originates in a person’s bone marrow and then can spread throughout the body, weakening bones and potentially damaging vital organs and compromising the immune system. However, Dr. Abonour said, myeloma’s complexity and tendency to attack multiple body sites make it particularly tricky.

“What’s perplexing is that it’s not really one disease,” he said. “What we are trying to figure out is how to have a definition of the different subtypes. Some are easier to treat and sometimes can be cured. And our goal is to identify those patients and treat them differently. By doing so we can come up with an algorithm.

“When I started working on multiple myeloma, we had one or two drugs with which to treat it; now we have six and should have a couple more by the end of the year. So I’m not as pessimistic as I used to be. This is a cancer that is rare, but we can find a cure.”

Dr. Abonour, left, and Steve Watson. | Photo By IU Simon Cancer Center

You won’t find a lick of pessimism in Pam Taylor, 67, of Carmel. Another charter member of the Miles for Myeloma organizing committee, Taylor was diagnosed with multiple myeloma about 12 years ago and has been a patient of Abonour nearly the entire time since then.

“He’s one of a kind,” she said of Dr. Abonour. “I’ve been in the medical field for many years, and I’ve known many oncologists, and the majority were reluctant to have personal relationships with patients. I can understand that because it is very difficult emotionally. (Dr. Abonour) is different. He’s very open. He’s the most empathetic physician I’ve ever met. He listens to the patients; he likes them to take an active role in their treatment. I’ve never felt like a number with Dr. Abonour. I’ve always felt like a valued person, and a friend, which I really, really appreciate.”

During the administration of former Gov. Mitch Daniels, Taylor advocated for Dr. Abonour to receive the Sagamore of the Wabash award, one of the highest civilian honors an Indiana resident can receive. His commitment to finding a cure, she wrote in a letter to Daniels, “is unwavering. He has vowed that he will be on the road every year to get to the finish line we all dream of.”

Dr. Abonour was recognized as a Sagamore of the Wabash on Feb. 19, 2010, in a special ceremony in which Taylor read excerpts of letters from his patients extolling his virtues.

“I can’t say enough good things about Dr. Abonour,” Taylor said. “We trust him with my treatment implicitly. Not many people have doctors they can rely on like that. I feel very blessed.”

Warsaw resident Steve Watson, 65, has lived with myeloma for more than a decade, and like Taylor and Gill, he’s been involved with Miles for Myeloma since the outset. Echoing Senseny’s analysis, he said Dr. Abonour, the cancer center staff and their team of volunteers have created a powerful sense of community among people affected by this mysterious ailment. He said it’s evident in the fact that people who’ve lost loved ones to myeloma continue to show up, year after year, at the post-ride dinner and symposium.

“I don’t know how to put it other than the dinner is very special,” Watson said. “You see widows who have lost their spouse, but you also see hope in Abonour explaining new research and what’s on the horizon. You see all the effort toward putting him out of business, and that’s what so special about it.”