From anguish to hope
"I consider myself fortunate to have the life that I do, the family that I've had, and so many wonderful friends," says Nancy O'Hagan, who was diagnosed with carcinoid cancer in 2000 and was told she didn't have long to live.
That's hardly news to Nancy O'Hagan, a 35-year-old Harvard graduate from Cambridge, Mass., who learned six years ago that she has carcinoid cancer. Since then, she has dedicated herself to finding help and hope for others with this disease, named in 1907 by the German pathologist Siegfried Oberndorfer for being "carcinoma-like."
O'Hagan had experienced fatigue, flushing, and abdominal pain for years, but doctors attributed her symptoms to stress and overwork as a corporate tax attorney. "I would get extremely hot, and my face would turn as red as a tomato," she recalls. "Then I'd look at my thighs and saw that the flushing was a full-body thing. As a lawyer meeting with clients, it was very debilitating."
One day, en route to her job at a prestigious Boston law firm, O'Hagan collapsed on the train and was taken by taxi to Massachusetts General Hospital. The flushing episodes turned out to be carcinoid syndrome, an uncommon side effect caused by tumors releasing large amounts of hormones into her bloodstream. Physicians warned her she might not have long to live.
Shunning self-pity, O'Hagan began educating herself about carcinoid and enrolled in some clinical trials to slow progression of the disease, which had spread to her liver and bones. She also underwent two embolization procedures to block blood flow to her liver and help contain her metastasis.
There seemed to be little hope for remission, however, and O'Hagan believes a bleak prognosis from doctors outside Boston offering second opinions contributed to her mother's suicide shortly before Mother's Day in 2001. "I think she had very little hope that I would get better or last as long as I have," says O'Hagan. Compelled by her late mother's anguish, O'Hagan and her husband, Patrick, launched the Caring for Carcinoid Foundation in December 2004 to help increase understanding of neuroendocrine cancers. The nonprofit medical research foundation awards grants to scientists performing cuttingedge, genetically based research, among them Kulke, Shivdasani, and others at leading cancer centers. It has awarded more than $2 million since its founding.
"There is very little public funding for these diseases because of their rarity," the slight, stylish O'Hagan reflected last spring. "So we're investing all our donations in fostering scientific collaboration and basic research, and accelerating drug development."
Caring for Carcinoid is one of several sources of private funding for the Shivdasani-Kulke partnership, enabling them to build the tumor/specimen collection and translational laboratory, as well as to carry out gene-chip analyses of neuroendocrine tumors. Among the others are philanthropists Dr. Raymond and Beverly Sackler of Greenwich, Conn., who have supported medical and educational institutions around the world and who, with their sons, have in recent years targeted research funding to carcinoid and related neuroendocrine cancers. The Sacklers have sponsored a yearly scientific meeting in the field and invited O'Hagan and another advocate for this work, Stephen Kaufer, who lost his wife to neuroendocrine cancer in 2005. Before Caroline Kaufer's death at age 42, the couple gave $1.05 million to expand Kulke's clinical investigations at Dana-Farber.
"After my wife's diagnosis, funding neuroendocrine research became our top priority," says Kaufer, co-founder of TripAdvisor, an online travel information and planning resource based in Needham, Mass. "We were shocked to find out how little was being done for this cancer."
Such funding is critical for advancing research into a rare illness that doesn't pose a public health threat or stimulate much interest among pharmaceutical companies, Shivdasani notes. "The seed money is vital," he says. "There's no way to get the big National Institutes of Health-sized grants without having some preliminary results. But that's the culture of the federal grant system: You don't get funded for an idea. You get funded for continuing an already-productive line of reasoning. So this support is not only vital, it's imperative."
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