Marty Tenenbaum was working as a computer scientist and Internet entrepreneur in northern California in 1998 when he was diagnosed with metastatic melanoma, a type of malignant skin cancer that often spreads to other parts of the body.
At the time of his diagnosis 17 years ago, few survived long with the disease. Tenenbaum reached out to several local oncologists, each of whom gave him the same dire prognosis, but differing treatment recommendations.
Fighting for his life, the Internet-savvy Tenenbaum set out to determine which treatment would be most effective for his particular type of cancer. He discovered, however, that there was no centralized information system that could provide the specific answers he sought.
“It was frightening. There was no data. You say this, you say that, but which one is best for me?” Tenenbaum said.
Facing the deadliest form of skin cancer, Tenenbaum widened his treatment search to the entire country. Fortunately, colleagues pointed him toward an experimental treatment. He went for it, but the trial ultimately was deemed unsuccessful – for most of the participants. But not Marty. It worked for him and he says it is the reason he’s here today.
“I bet my life on a clinical trial that failed,” Tenenbaum said. The experience left him with a new way to look at cancer treatments and implanted a question in his head.
“Why did the trial only work for some?” he asked himself.
The lack of easily searchable, specific information on his type of cancer combined with his nagging “why me?” question inspired Tenenbaum to take action. He vowed to help others facing situations similar to his by delivering personalized medicine based on individual patients’ experiences.
“It’s a very personal mission,” Tenenbaum said.
The result of Tenenbaum’s quest for effective personalized medicine is the nonprofit network of patients, doctors and scientists known as Cancer Commons. The organization’s mission is to ensure that patients and physicians have the knowledge they need to make the best possible personalized treatment decisions while continuously updating that knowledge based on each patient’s response.
The project is ongoing for Tenenbaum and his staff, since the more information they gather from individual cancer patients, the more specific – and effective – their treatments can be.
“It’s what gets me up every morning. It’s huge,” he said.
‘GOOGLE MAPS’ OF CANCER
Cancer Commons helps patients evaluate the effectiveness of their current treatment plans; locate clinical trials recommended for not only their general type of cancer, but also their molecular subtype of cancer; and connect with relevant researchers.
“We’re building up this national network of collaborators and partners,” Tenenbaum said.
He hopes his network will help cut the cancer mortality rate in half within 10 years. This hope is not reliant upon medical innovations, but on the organization’s associated computer apps, which allow patients to filter through the confusing web of existing cancer research.
Tenenbaum said it takes years for new cancer research to reach patients because institutions, drug companies and academics often choose to withhold their data. He would like to change this.
MyCancerCommons, one of the nonprofit’s apps, is already live on its website, although it does not yet accept information on all types of cancer.
The organization is developing several other apps, including My Cancer Maps, which will guide patients step-by-step through the various personalized treatment pathways available.
“Think of it as the Google Maps of cancer,” Tenenbaum said.
Joshua LaBaer, a professor at Arizona State University’s Biodesign Institute and the director of the Virginia D. Piper Center for Personalized Diagnostics, agrees that scientists can learn from the results of each patient’s experience and use this knowledge to create better treatment experiences for future patients. He believes that a project like Cancer Commons could be the tool to achieve this, even if the goal is elusive.
“Everybody who is getting treated for cancer, whether they know it or not, is part of an experiment,” LaBaer said. “When we set about treating a patient, we’re of course treating them with the best of what we know today, but it’s not enough.”
ARIZONA BIOINDUSTRY POISED FOR GROWTH
LaBaer’s comments were delivered during a March 19 event sponsored by the Arizona BioIndustry Association, during which Tenenbaum also discussed his experiences with cancer, forming Cancer Commons and Arizona as a hub for biomedical research.
“Arizona is a hotbed of activity in personalized medicine, especially as it relates to cancer,” Tenenbaum said.
Tenenbaum wants to organize regional Cancer Common organizations in California’s Bay Area, Seattle, Boston and Phoenix, with the goal of connecting these smaller databases into a national network.
LaBaer said Arizona’s growing technological industry is well-suited for Cancer Commons’ growth. The number of Arizona bioindustry jobs increased by 22 percent from 2007 to 2012, according to the Arizona Bioindustry Association.
“It’s a state that has an open mind about collaborative approaches, and so I think it’s a perfect place, where something like Cancer Commons could have a home,” he said.
Joan Koerber-Walker, president and CEO of the Arizona Bioindustry Association, helped coordinate the event in partnership with the Dorothy Foundation and the Arizona State University Biodesign Institute. Walker agreed that Arizona’s collaborative atmosphere is ideally suited for Cancer Commons to take off.
“In order for a program like Cancer Commons to work, you have to have a highly collaborative atmosphere where doctors, patients, hospitals and researchers are all talking to each other,” Walker said. “Well that by definition, describes Arizona.”
Walker advocates for patients not only to receive access to the right information, but to get it at the right time.
“To have a regional and then ultimately national network that provides access to the information patients need in order to make their lives better, and more importantly, sustain their lives, that would be a very good thing,” she said.
Walker believes that Cancer Commons, in partnership with other organizations, will ultimately achieve its goal.
“That is the future of health care,” Walker said.