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Patient Advocacy in Support of James Bond's Fight to Conquer Multiple Myeloma

October 2016 Vol 2 No 5

The death-defying feats of James Bond were explored on an episode of the Lifetime network’s The Balancing Act. No, not that James Bond. Our James Bond didn’t hail from the UK’s Secret Service, but is an American who has been besieged by a foe as lethal as Dr. No or SMERSH–the rare blood cancer multiple myeloma. Kristy Villa, The Balancing Act’s co-host, interviewed Kathleen Bond, James’ wife, and Fatima Scipione, Senior Director of Patient Advocacy at Takeda Oncology, about the success story of Mr. Bond.

“Jim was diagnosed with terminal multiple myeloma in 1992,” said Mrs. Bond. “His prognosis was that he would live for 2 to 3 years. At that moment, we couldn’t imagine what we were hearing, so we made up our minds then and there that we would forgo a bucket list and give his cancer our best fight.”

Ms. Villa then introduced Ms. Scipione as representative of her Patient Advocacy team, which is focused on providing access to care for patients with multiple myeloma, educating patients and their families on their specific cancer and treatment, and is an active voice affecting public policy on behalf of patients with cancer. The Patient Advocacy team reaches more than 40,000 patients through live educational programs every year.

“Multiple myeloma is a rare blood cancer that affects white blood cells, and it comprises 1% of all cancers. Patients with multiple myeloma have to contend with excruciating bone pain and anemia, which presents as fatigue,” said Ms. Scipione.

Bike Ride to Hope

Mr. Bond himself was noticeably absent from the interview, because he was training for the Tenth Annual Pan Ohio Hope Ride, a 4-day, 328-mile bicycle tour de force around Ohio. The ride included 427 participants and raised nearly $1 million for the American Cancer Society’s Hope Lodges, which offers patients with cancer and their caregivers free room and board when their hope for an effective treatment resides in a distant city. There are 34 Hope Lodges around the United States.

“I founded the Pan Ohio Hope Ride, because it gave me an opportunity to help other people who were fighting cancer and their caregivers,” Mrs. Bond told Ms. Villa. “The bike ride helps me to get mad and to get even.”

Cancer Research Spells Hope

“We lost our mother, father, and sister to cancer, and I was diagnosed with an incurable blood cancer, multiple myeloma,” said Mr. Bond on Pan Ohio Hope Ride’s website. “We were told I would have 3 years at most. That was 24 years ago. Research by the American Cancer Society and Takeda Oncology led to an experimental drug…,which saved my life.”

Ms. Villa asked Mrs. Bond about her husband’s present health. “My husband’s cancer has been in remission for 6 years, and he’s doing great,” she responded. “He’s a firm believer in exercise, and that has certainly helped him get through all his years of treatment.”

From Wife to Caregiver

Ms. Villa then inquired about Mrs. Bond’s metamorphosis from a wife to a caregiver. “When he was initially diagnosed with multiple myeloma, I realized that I would have to really educate myself on the disease, so I would ask the right questions when talking to his physicians.

A caregiver also needs the support of family and friends, because it can be overwhelming at times. You need to give yourself permission to cry, and allow yourself to have bad days. But Jim and I tried not to have a bad day on the same day–sometimes we argued about who would have the bad day. We also established our 8 pm rule. After 8 pm in our house, we don’t talk about cancer. Cancer consumed enough of our lives, and we decided not to give it the entire evening.”

Patient 007

“James Bond is certainly an iconic character in popular culture and in an interesting synchronicity, Jim was the seventh patient in a…trial that was conducted by Takeda Oncology, so he was patient 007,” said Ms. Scipione. “At Takeda Oncology, the patients, like Jim, are at the center of everything we do. For us to bring better treatments forward, we need our patients to be our partners. We need to know what matters in their lives as they look at a diagnosis like multiple myeloma. There isn’t a day that goes by where our Patient Advocacy group doesn’t speak to the patients whom we serve. We’re very connected to the patients, which inspires us to go to work every day.”

On the Pan Ohio Hope Ride website, Mr. Bond wrote that cycling in the Pan Ohio Hope Ride 4 years ago assured his medical team he was strong enough to survive a fourth bone marrow transplant. He also noted that he’s been asked, “Is it hard for a person with cancer to cycle 328 miles?” And he invariably replies, “Yes, but dealing with cancer is harder.”

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