25-Year Multiple Myeloma Survivor Rides for HopeApr 18, 2017
Multiple myeloma survivor Jim Bond is easy to spot among the hundreds of bicyclists in the Pan Ohio Hope Ride, which takes place every July and raises money for the American Cancer Society. Amid the summer heat, Bond is the one in tights, long sleeves, gloves, neck shield, and hat brim. He also wears sunscreen with the highest SPF he can find.
“On hot, 90 degree days, wearing tights and sleeves gets warm, but I can’t take a chance,” says Bond. “I’m the one rider who really looks forward to a cloudy day!”
Treatments for multiple myeloma and secondary leukemia, including stem cell transplants and full body radiation, have increased Bond’s risk for skin cancer. So far, he’s had about a dozen basal and squamous skin cancer lesions removed.
‘A long slog’
Bond found out about his multiple myeloma in 1992 after he had an annual medical exam mandated by his employer. It’s a type of cancer that starts in the bone marrow.
Even though the only symptom Bond felt was a slight back ache, tests showed he had collapsed vertebrae, broken ribs, and lesions in his skull, all as a result of the cancer. His doctor told him that his myeloma wasn’t curable, and that he’d likely live another 3 years at most. He was 42.
The news spurred Jim and his wife, Kathleen into action. They did research and consulted with specialists. Bond received drug treatment and underwent 3 stem cell transplants, including one using stem cells from his sister, Becki. He was in and out of remission for the next 10 years. “It’s been a long slog, and I’m really fortunate and blessed to be still alive,” says Bond.
Second opinions and clinical trials
In 2002, Bond became very sick again. He had a high fever, couldn’t eat, and his kidneys began to shut down. His doctor said no available treatment could help him. Once again, Jim and Kathleen sought a second opinion. “Some people say they don’t want to offend their local doctor by going to another one. I say, ‘That’s ridiculous – it’s your life!’” said Bond.
His second doctor told him about a clinical trial in Boston – about 600 miles away – that would accept him. It was for the drug bortezomib, which was only available in clinical trials at the time. Within 2 weeks of taking the drug, Bond’s condition had improved dramatically, and at the end of the 9-month trial he was declared to be in complete remission. (The drug was approved by the FDA the following year with the brand name of Velcade, and it is now part of the standard treatment for many myeloma patients.)
Bond says he’s grateful for the clinical trial, the drug company, and also for the American Cancer Society. He later learned that 3 scientists, Aaron Ciechanover, Avram Hershko, and Irwin Rose, shared a Nobel Prize for a discovery that led to development of the drug. All were funded early in their career by the American Cancer Society.
The experience turned Bond into an advocate for clinical trials. “I am a huge believer in clinical trials, but there are some misunderstandings and some real obstacles that prevent eligible patients from participating,” says Bond. He says many people are afraid they’ll get a placebo instead of treatment. But he says that’s a misconception because in the vast majority of cancer trials, all patients get at least the “standard of care” treatment, even if they don’t get the experimental treatment. Many studies even allow patients to “cross over” to the experimental treatment if the standard treatment doesn’t work for them.
A real obstacle, however, is finances. Jim was able to afford his extended stay in Boston. But not everyone can. After his experience, he and Kathleen decided to try to help remove this barrier and help more people get the care they need. They especially wanted to raise money for the American Cancer Society Hope Lodge program, which provides patients and their caregivers with a free place to stay while participating in clinical trials or getting other cancer treatment away from home.
Kathleen and the Pan Ohio Hope Ride
Long before Jim was diagnosed with cancer, Kathleen volunteered for the American Cancer Society, going door to door collecting donations. Later, she helped raise funds for the Hope Lodge facility in Cleveland, and over the years held leadership positions for ACS at the state and national levels. She’s been recognized many times over for her service, most recently with the American Cancer Society National Volunteer Leadership Award.
After the Bonds returned to Ohio from Boston, Kathleen wanted to do something big. She developed the idea of a bicycle tour fundraiser and worked with a local bicyclist, Dennis Hoffer, to plan the event. The first Pan Ohio Hope Ride took place in 2007 with 50 cyclists. This year more than 300 participants have already signed up. The ride has raised more than $6 million since it began, and Kathleen hopes it will surpass $7 million this year.
In 2007, Bond was determined to support the new event, but he had a problem. Not only had he never been on an extended ride, he didn’t even own a bicycle. But he threw himself into the project and began training with Hoffer. With some extra encouragement from his son, he rode all 4 days of that first ride, and has done so every year since. This July will be his 11th ride.
‘The Pan Ohio Hope Ride saved my life.’
In 2012, Bond had just completed a ride when a routine blood check showed something was off. Further tests showed he had developed leukemia as a result of treatments he’d received in the 90s for his multiple myeloma. He’d need another transplant, his 4th, with stem cells from a matching donor. But doctors said his sister’s cells wouldn’t work a second time. He’d need to find another donor.
Bond found a match through the international bone marrow registry, Be The Match. His donor was a woman in Germany. But he still had one big problem. A committee had to approve the transplant, and a few of the doctors didn’t think Bond could survive a 4th one. However, when they learned he had just completed a 4-day ride across Ohio, they changed their minds. “They said, ‘He must have the strength, both mentally and physically – we’ll take a chance on him,’” according to Bond.
The transplant was successful, and Bond again went into remission. “The Pan Ohio Hope ride saved my life,” he said.
‘What’s your secret?’
Because Bond has long outlived his original prognosis with multiple myeloma, he says people often ask him, “What’s your secret?”
“We do all we can do,” says Jim. “Kathleen handles the research and we stay informed. We set goals and make plans – we don’t let cancer keep us from planning things. And I am committed to getting some form of exercise every single day. Even in the hospital, I force myself to be active.”
He adds, “I’ve been lucky, and Kathleen and I have done all we could to give luck a chance.”
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