Originally published on June 24th, 2014 by Victoria Colliver at SFGate.com.
Victoria is a San Francisco Chronicle staff writer. --- Natalie DiMarco's only obvious risk factor for getting lung cancer was having lungs. Natalie DiMarcoDiMarco had been experiencing respiratory problems for months in 2010, but her doctors just assumed the mother of two had allergies. By the time she learned she had lung cancer, the disease had spread into her lymph nodes and reached the membranes that surround the lungs. "I'm young, didn't have any history of smoking, and that's why a doctor didn't X-ray me from the beginning," said DiMarco, now 36, who lives in Penngrove with her husband, daughters, ages 5 and 6, and a teenage stepson. An estimated 4,600 to 6,900 people under 40 in the U.S. are diagnosed every year with lung cancer that has no apparent cause. The disease appears to be quite different from the lung cancer found in longtime smokers and, aside from initial research that indicates that young patients, like DiMarco, tend to share certain genetic changes, the source remains a mystery. A new study just getting under way hopes to find out more about these patients, what they have in common and, potentially, why they get lung cancer. If researchers can find a common thread, or several, it could lead to more effective treatment or point the way to new targeted therapies. The $300,000 Genomics of Young Lung Cancer Study is small - just 60 patients - but the lead researchers hope it will help find the answers they're looking for and even help others with lung cancer, particularly the 15 percent of the nearly 230,000 Americans diagnosed with lung cancer each year who have never smoked. Addario Lung Cancer Medical Institute, a partner organization of theBonnie J. Addario Lung Cancer Foundation in San Carlos, initiated and is paying for the study along with Genentech. Not much is known. Bonnie Addario, who was diagnosed with lung cancer in her mid-50s in 2003 and founded the organizations that bear her name, said much is unknown about this population of patients because it's never been systematically studied. "We're hoping to find something that may be in another cancer or another disease that could be part of their therapy," she said. Dr. Barbara Gitlitz, a lead researcher of the study and director of the lung, head and neck program at theUniversity of Southern California's Norris Comprehensive Cancer Center, said the disease should be thought about as its own entity. "We may discover that by looking at the genomics of these people, we may find driver mutations. We'll see patterns that might be specific to this population and we might see something new," she said. Time is of the essence, considering how devastating a lung cancer diagnosis is. Bonnie AddarioJust 15 percent of people diagnosed with lung cancer live longer than five years, in part because the disease is difficult to detect in its earlier stages and tends to be caught too late. That's particularly true among young people because no one's looking for it. "What we're hearing quite often is that they're athletes and they're very fit - the people you would least expect to have cancer, let alone lung cancer," Addario said. She added that the disease appears to be more common in young, nonsmoking women than in their male counterparts. Inspired by Cal athlete. Jill CostelloThe study was inspired by Jill Costello, a San Francisco native and varsity coxswain for UC Berkeley's women's crew, who died of lung cancer in 2010 at age 22, a year after she was diagnosed. Jill's Legacy, a subsidiary of Addario's foundation, was created in her honor to raise funds and awareness for lung cancer among young people. Researchers do know that young people and nonsmokers with non-small-cell lung cancer - the most common kind - typically have alterations in their genes that can affect how the disease is treated. The genetic mutation found most often - EGRF, for epidermal growth factor receptor - occurs in about 10 to 15 percent of non-small-cell lung cancer patients. But a host of other known mutations - ALK, ROS1, BRAF, HER2, MET, RET - have also been identified as contributing to lung cancer in young patients, said Dr. Geoffrey Oxnard, a lung cancer specialist at the Dana-Farber Cancer Institute in Boston, also a lead researcher of the study. Drugs have been developed in recent years to "target" those mutations, or go after those specific cells to thwart their growth. The first EGRF therapies, AstraZeneca's Iressa, or gefitinib, was approved by federal regulators in 2003 followed by Roche's Tarceva, or erlotinib, in 2005. But even these relatively new treatments don't cure the disease; at most they buy time - from several months to five years - before the cancer returns. Oxnard said he hopes the study - which will test for more than 200 mutations - will not only show a pattern of these genetic alterations but also spotlight the necessity for young and nonsmoking people to get genetically tested after diagnosis, which is not routinely done in all centers. "We know comprehensive genetic testing has the potential to make a difference in any cancer patient, but we think in these patients, it's really going to be transformative," Oxnard said. DiMarco, who hopes to participate in the study, said she learned her genetic subtype by seeking out specialists around the country. Almost by chance her biopsy was tested by a Boston surgeon for the ROS1 alteration, which in 2010 was just newly identified. The mutation makes DiMarco a candidate for a drug called crizotinib, sold under Pfizer's brand name Xalkori. DiMarco, who has undergone numerous rounds of chemotherapy and radiation, has not yet resorted to Xalkori because she and her doctors want to keep that in the arsenal to use only if and when it becomes necessary. So far her disease has been kept in check, and she's been off chemotherapy for 17 months while undergoing regular scanning. Lisa GoldmanAnother young patient, Lisa Goldman, a mother of two who lives in Mountain View, was diagnosed with lung cancer in January at age 40. The disease was found in both lungs and considered stage four. Like DiMarco, Goldman has tested positive for the ROS1 mutation and has also chosen to hold off on Xalkori after receiving other therapies in combination with traditional chemotherapies. "I have that in my back pocket to use next," she said, referring to thePfizer drug. Goldman, who may not be eligible for the study now that she's 41, said the stigma of lung cancer because of its connection to smoking causes her to hesitate about naming her disease and then assert she's never smoked. But she speaks out about having lung cancer because she says she has to. "People need to know this happens. I'm not a fan of smoking, but nobody deserves to get cancer," she said. "Smoking is a contributor to breast cancer and heart disease and other disease, but people don't ask you if you caused this yourself." Goldman's latest scan showed her tumors had shrunk or remained stable, with the exception of one tiny new spot. But she tries to retain a sense of normalcy, particularly for her kids, ages 8 and 11. "How do you live with something like this hanging over your head?" she said. "You just can't live like every day is your last." Living in the present. DiMarco manages by incorporating Chinese medicine - acupuncture, massage, cupping therapy - into her life. As far as her young children know, their mom has some "bad cells in her body" that "made a spot in her lung" and that she has to take medications to get rid of it. While DiMarco knows she's been dealt a difficult hand, she tries to live in the present but look to the future about the potential treatment options. "It's all about what card you play that buys you the most time," DiMarco said. "If I understand what to do now ... I can sleep easier and not have to worry. But I need to have a plan. I need to know, what do we do next?" About lung cancer:
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Breyan Harris, a lifelong non-smoker who was recently diagnosed with lung cancer, posses at her home in Fair Oaks, Calif., Monday, June 16, 2014. Harris, 33, hopes to enroll in a new cancer drug test that starts Monday in hundred of hospitals around the country. Like a medical version of speed dating, doctors will sort through multiple potential drugs and match patients to the one most likely to succeed based on each person's unique tumor gene profile.(AP Photo/Rich Pedroncelli) By MARILYNN MARCHIONE
The Associated Press A bold new way to test cancer drugs started Monday in hundreds of hospitals around the U.S. In a medical version of speed dating, doctors will sort through multiple experimental drugs and match patients to the one most likely to succeed based on each person's unique tumor gene profile. It's a first-of-a-kind experiment that brings together five drug companies, the government, private foundations and advocacy groups. The idea came from the federal Food and Drug Administration, which has agreed to consider approving new medicines based on results from the study. Its goal is to speed new treatments to market and give seriously ill patients more chances to find something that will help. Instead of being tested for individual genes and trying to qualify for separate clinical trials testing single drugs, patients can enroll in this umbrella study, get full gene testing and have access to many options at once. The study, called Lung-MAP, is for advanced cases of a common, hard-to-treat form of lung cancer — squamous cell. Plans for similar studies for breast and colon cancer are in the works. "For patients, it gives them their best chance for treatment of a deadly disease," because everyone gets some type of therapy, said Ellen Sigal, chairwoman and founder of Friends of Cancer Research, a Washington-based research and advocacy group that helped plan and launch the study. "There's something for everyone, and we'll get answers faster" on whether experimental drugs work, she said. Cancer medicines increasingly target specific gene mutations that are carried by smaller groups of patients. But researchers sometimes have to screen hundreds of patients to find a few with the right mutation, making drug development inefficient, expensive and slow. One of the leaders of the Lung-MAP study — Dr. Roy Herbst, chief of medical oncology at the Yale Cancer Center — said he once screened 100 patients to find five that might be eligible for a study, and ultimately was able to enroll two. "It's just going to be impossible, in rare subgroups, for companies to find enough" people to try out a new medicine, said Dr. Richard Pazdur, cancer drugs chief at the FDA. He and others at the FDA suggested the Lung-MAP trial design to speed new treatments to market and "minimize the number of patients exposed to ineffective therapies," he said. Everyone in the study will be screened for mutations in more than 200 cancer-related genes, rather than a single mutation as in conventional studies. Then they will be assigned to one of five groups based on what these tumor biomarkers show. Each group will test a particular experimental medicine. Drugs can be added or subtracted from the study as it goes on, based on how each performs. The initial round of testing involves Amgen, Genentech, Pfizer, AstraZeneca PLC, and AstraZeneca's global biologics partner, MedImmune. Up to 1,000 patients a year can be enrolled in the study. It will cost about $150 million. The National Cancer Institute is paying $25 million, and the rest will come from foundations, charities and others in the public-private partnership. About 500 hospitals that are part of a large cancer treatment consortium around the country will take part, and some private groups want to join as well, Herbst said. "Nothing like this has ever been done before," where such comprehensive testing will be done to match patients to experimental drugs, he said. Breyan Harris, a 33-year-old nurse from Sacramento, hopes to enroll. She's a lifelong non-smoker who was diagnosed with lung cancer on June 3. "Since then I've pretty much been on the phone, seeing doctors, trying to figure out how do I get rid of this," she said. Harris expects to have one lung with a large tumor removed, "but if it comes back in my other lung I'm in real trouble," so finding a drug to attack any remaining, hidden cancer is crucial, she said. Online: Study sites and info: http://tinyurl.com/ovv4cnl and http://www.Lung-MAP.org Marilynn Marchione can be followed at http://twitter.com/MMarchioneAP Copyright 2014 The Associated Press Amanda Chen is a health researcher at Self Care Catalysts, a health research company based in Toronto and San Francisco. She is conducting a self-funded, proprietary research on the Cancer Patient Journey. She is looking for patients to participate in a 30-minute online survey. This survey will explore the journey of cancer patients as they cope with their illness, their treatment experience, decision making process, the role of their caregivers and supporters, and more. The insights drawn from this survey will be used to develop health solutions and programs that better meet patients’ needs. All participants will be compensated for their time. You can download the .PDF file below to learn more. You can also contact Amanda directly at amanda@selfcarecatalysts.com.
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