Lung cancer survivor & Jill's Legacy advisory board member, Taylor Bell, was featured in the August 2013 issue of Cosmopolitan! Congratulations, Taylor!

You can read the Cosmopolitan article HERE.

This story originally published by Sam Goodwin on HGNG.com on 6/26/13.

The International Association for the Study of Lung Cancer (IASLC) finds that much more research needs to be done on treatment given to non-smoking women for lung cancer.

An estimated 516,000 women worldwide are affected by lung cancer and 100,000 of these women are from the United States. Up until now, women with lung cancer have been given the same treatment as men. However, numerous studies have highlighted different characteristics of lung cancer in women. Hence, there is a need for more research to be done on lung cancer treatment given to women, especially those who don't smoke, states the International Association for the Study of Lung Cancer (IASLC).

Researchers from the University of Toulouse III in France looked into the clinical, pathological and biological characteristics of lung cancer in 140 women.  They found that 63 participants had never smoked in their lives while 77 were either former or current smokers. Researchers compared the findings of both groups and found differential genetic alteration repartition in women according to their tobacco status.

Around 50.8 percent of women who had never smoked displayed an EGFR mutation while only 10.4 percent of current/former smokers showed the same mutation. However, 33.8% of current/former smokers showed K-Ras mutation while only 9.5 percent of women who had never smoked showed this form of mutation.  The researchers also observed a higher percentage of estrogen receptors (ER) α expression in patients who never smoked when compared with smokers.

This led researchers to conclude that lung cancer in women who have never smoked is more frequently associated with EGFR mutations and estrogen receptor (ER) over expression.

"These findings underline the possibility of treatment for women who have never smoked with drugs to target hormonal factors, genetic abnormalities, or both," the authors say.

The study is published in the July issue of the Journal of Thoracic Oncology.

Originally published at medpagetoday.com by Charles Bankhead, Staff Writer, MedPage Today on April 05, 2013.

Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, BSN, RN, Nurse Planner

All patients with advanced lung adenocarcinoma should undergo testing forEGFR and ALK mutations to determine their eligibility for targeted therapies, according to a jointly developed guideline from three organizations.

Patients should undergo EGFR testing at diagnosis of advanced disease or at recurrence or progression if they were not tested at earlier disease stages. ALKrearrangement testing is suggested by the International Association for the Study of Lung Cancer, the College of American Pathologists, and the Association for Molecular Pathology.

Patients should not be excluded from testing because of smoking status or clinical characteristics, the guideline authors said in an article published online in the Journal of Thoracic Oncology.

"It was recognized by each of these three organizations that there was a gap in knowledge, a gap in communication, and variance around the world in how this testing ought to be done," first author Neil I. Lindeman, MD, a pathologist at Brigham & Women's Hospital in Boston, said in video statement.

"We decided collectively ... that these three voices should come together in order to make a consensus guideline."

The consensus opinion of the guideline panel is that EGFR and ALK testing should be encouraged for patients with stage I, II, or III disease at diagnosis.

EGFR testing should have priority over all other genes, followed by ALK.

"Any oncologist should be able to provide this testing and should do this testing to give their patients optimal care," Gregory Riely, MD, a medical oncologist at Memorial Sloan-Kettering Cancer Center in New York city, said in the video.

"With a proper biomarker, I can tell patients that they have a 70% to 80% chance of responding to a treatment rather than saying that they have a 1 in 10 chance of responding to treatment," he added.

Other points made in the guideline include:

• Primary and metastatic lesions are equally suitable for testin
  
• Test results should be available within 10 working days and labs that cannot keep that turnaround schedule should take steps to keep the schedule -- either in-house or at a reference lab (consensus)
  
• KRAS testing should not be used as the sole determinant of a patient's eligibility for anti-EGFR therapy
  
• Specimens from patients with acquired resistance to EGFR inhibitors can be tested for the secondary EGFR T790M mutation with as few as 5% of specimen cells
  
• Reverse transcriptase polymerase chain reaction is not recommended as an alternative to fluorescence in situ hybridization assay for selecting patients for ALK inhibitor therapy
  
• In the setting of fully excised lung cancer specimens, EGFR and ALK testing is not recommended in lung cancers that lack any adenocarcinoma component, such as "pure" squamous cell carcinomas, "pure" small cell carcinomas, or large cell carcinomas lacking any immunohistochemistry (IHC) evidence of adenocarcinoma differentiation.
  

The guideline addresses a variety of other issues related to testing techniques and processes, quality control, testing for secondary mutations and for other genes, and reporting results.

The broad recommendations for testing and the guideline's emphasis on urgency in obtaining test results reflect practices already in place at leading cancer centers, according to Edward Kim, MD, of Carolinas HealthCare System's Levine Cancer Institute in Charlotte, N.C.

"Testing should be based on type of patient (i.e. histology) and not clinical characteristics (i.e. smoking status or ethnicity)," said Kim, who was not involved in writing the guideline. "Both tests (EGFR and ALK) are recommended to be ordered at diagnosis, which is our current practice at Levine Cancer Institute.

"Although 'within 2 weeks' for results is recommended, I hope that the turnaround time can be shortened in the near future. Patients with lung cancer are anxious to begin therapy, and longer delays will preclude the use of these molecular agents in the front-line setting."

The guideline authors disclosed relationships with Novartis, Millennium, Arqule/Daiichi Sankyo, NanoString, Genzyme, Infinity, Sequenom, Remedica Medical Education, Abbott, Existence Genetics, CymoGen Dx, Applied Spectral Imaging, Parteq-Queen's Commercialization Office, Merck, Eli Lilly, Pfizer, OSI/Genentech/Roche, AstraZeneca, Boehringer Ingelheim, Amgen, GlaxoSmithKline, Bristol-Myers Squibb, and sanofi-aventis. Several authors disclosed royalties related to publications and fees received as expert witnesses.

Primary source: Journal of Thoracic Oncology

Source reference:  Lindeman NI et al. "Molecular testing guideline for selection of lung cancer patients for EGFR and ALK tyrosine kinase inhibitors: Guideline from the College of American Pathologists, International Association for the Study of Lung Cancer, and Association for Molecular Pathology" J Thorac Oncol 2013; DOI: 10.1097/JTO.0bO13ee318290868f.

Leading magazine downplays value of lung cancer screenings, to the detriment of advances in early detection research.

SAN CARLOS, Calif., March 20, 2013 /PRNewswire
-- 
The following statement was issued by Bonnie J. Addario regarding the March cover article in Consumer Reports: The cancer tests you need--and those you don't:

"I am appalled by the March 2013 Consumer Reports cover story (The cancer tests you need--and those you don't), because of the misleading and misguided message it sends to people who really need life-saving cancer screening tests, and how it discredits the value and importance of proper early detention cancer screening tests.

"The article's irresponsible reporting is best summed up in this statement on page 31: 'But most people shouldn't waste their time on screenings for bladder, lung, oral, ovarian, prostate, pancreatic, skin or testicular cancers.'

"Consumer Reports is one of the most trusted publications in America. Anyone, whether they know they are low or high risk, will read that statement and walk away believing early detection cancer screening tests are unnecessary. The six-page article mentions only twice that its ratings apply only to asymptomatic, low-risk population.

"Shame on Consumer Reports. We are talking about people's lives here.

"I myself am a lung cancer survivor. For more than a year I was misdiagnosed and not given an early detection screening test, even though I was in a high-risk category. When I was finally diagnosed I was stage 3B. Unlike so many others, I beat the odds. But my odds would have been better with an early detection cancer screening test. I founded the Bonnie J. Addario Lung Cancer Foundation seven years ago to advocate and raise money for better research, education, early detection and treatment. Because something must be done.

The stats are staggering.

• Lung cancer kills more people than the next five biggest cancers combined.
  
• Eighty percent of new lung cancer cases are former smokers or never smokers.
  
• Yet the five-year survival rate has been unchanged for more than 40 years. Only 15 percent of diagnosed patients live longer than five years.
  
• More funding and better research will lead to more effective early detection screening, which will save and prolong lives.
  

"Cancer screening and treatment are certainly at a crossroads, as the article states. This is made clear as well by recent legislation to direct more tobacco settlement money to early lung cancer detection programs. But the article's irresponsible representation of the value of screening tests, I fear, might damage the progress my lung cancer foundation has made over the past seven years - just as we are making great strides.

"People cannot readily see symptoms of lung cancer. Symptoms are deep in the lungs, unlike breast cancer, where lumps can be felt and are visible. When you are diagnosed with lung cancer it is often at stage four, when it's too late.

"The Consumer Reports article makes only one responsible and thoughtful statement: 'Weighing the risks and benefits of cancer screening is best done in the context of a patient-doctor relationship.'

"Consumer Reports should stay out of the health care advice business, and stick to writing about toasters and washing machines. I wouldn't approach my doctor about whether I should buy a Honda or a Ford. And likewise, people should not consult Consumer Reports to help them decide whether or not to have a potentially life-saving cancer screening test."

About the Bonnie J. Addario Lung Cancer Foundation 

The Bonnie J. Addario Lung Cancer Foundation is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. The Foundation works with a diverse group of physicians, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. BJALCF was established on March 6, 2006 as a 501c(3) non-profit organization and has raised more than $9 million for lung cancer research.

Attention North Georgians!  (...and East Tennesseans and Western North Carolinians....)  Help us fight lung cancer!  Join our team for "Breathe Deep Blue Ridge" at beautiful Mercier Orchards in Blue Ridge, GA!   

Click here to learn more.

Congratulations to The Joan Gaeta Lung Cancer Funds's Medical Advisor, Dancing for Joan's Honorary Chairman, Joan Gaeta's Pulmonologist, friend, and all-around great guy - Dr. Paul Scheinberg!

From The Atlanta Business Chronicle (Jan 25-31, 2013 Edition):

by Rich Barlow
Originally published by BU Today on 1/22/13 at bu.edu.

Avrum Spira’s aunt died of lung cancer almost 20 years ago. She was a nonsmoking exercise buff in her 40s who hadn’t been exposed to any known toxins; she worked in a government office, not a coal mine. “One of the healthiest people you could imagine, did everything right,” says Spira (ENG’02), who at the time was an internal medicine resident at the University of Toronto.

The one thing she didn’t do right wasn’t her fault: she’d been born to a nonsmoking mother who had died from the same illness. “I’m absolutely convinced she had a genetic predisposition” to lung cancer, says Spira, a School of Medicine professor and chief of computational biomedicine. That conviction set him on a quest for the genetic key to a medical mystery: why some people who have never smoked fall victim to this scourge of cigarette users.

Lung cancer kills more Americans than any other cancer, and twice as many women die from it than from breast cancer, although the latter gets greater public attention, says Spira. In 2008, the last year for which data was available, more than 208,000 Americans were diagnosed with lung cancer and almost 158,600 died from it. Spira says between 10 and 15 percent of these annual victims are nonsmokers (the percentage has been edging up slowly in recent years) with no apparent exposure to other toxins—a crucial caveat. “How do you know someone has been or has not been exposed to something in the environment?” he asks. Some potential toxins, like radon, are invisible, he notes, “so people who we’re seeing now, with higher rates of nonsmoking lung cancer—is it because they were exposed to radon 20 years ago?”

It’s true that worldwide, the rise in the incidence of lung cancer—from the eighth leading cause of death in 1990 to fifth in 2010—is mostly a function, perversely, of good news: as living standards have improved in the developing world, more people survive into adulthood, meaning a decline in childhood deaths from malnutrition and infectious diseases. That has brought an accompanying uptick in the number of people dying from diseases mostly found in wealthier countries, among them cancer. Moreover, air pollution in industrializing countries has resulted in more lung cancer in nonsmokers there, Spira says.

But in the United States, he says, doctors believe there’s a similar spurt in lung cancers in nonsmokers who’ve had no apparent contact with other toxins. The most extensive studies, incorporating detailed questionnaires and visits to peoples’ homes to see their environment, show that “there hasn’t been a clear association among nonsmokers who are getting lung cancer with exposures to other things.”

An ongoing, as-yet-unpublished study by a team that includes Spira is looking at tumor tissue and adjacent, noncancerous tissue from the lungs of 32 subjects with lung cancer: 8 smokers, 11 former smokers, and 13 who never smoked and had no apparent exposure to other toxins. The researchers ran the samples through a gene sequencer at MED, which “can give us unprecedented insight into the genomic changes leading to lung cancer” in nonsmokers, says Rebecca Kusko (MED’14), a graduate student spearheading the study in Spira’s lab.

With the sequencer, “we study the normal cells from each person as a control,” says Spira, “and then what happens in their tumor right next door, and say, what’s changed?” Preliminary results suggest that in the smokers, “a huge number of cancer pathways are activated,” as genes controlling cell growth in the tumors turned on. But those pathways weren’t necessarily activated in the nonsmokers, who showed different gene changes between their healthy lung tissue and their tumorous tissue. The researchers’ hypothesis is that the nonsmokers had a genetic predisposition, a pathway, to cancer that was activated by something in their environment.

That trigger, Spira theorizes, may be a viral infection (cervical, liver, and head and neck cancers are all caused by viruses, he says). The researchers are now sequencing the tumor tissue of the nonsmokers to try and find any viral genes. “Even if there’s one viral gene per million human genes, we might pick it up, we believe,” he says. The work will take a year or two.

Potential therapies—which are many more years away, he warns—might include screening people with the genetic predisposition and then giving those with the predisposition regular lung scans to catch cancers early. Another possibility would be drugs that could turn off uncontrolled growth in cancerous cells. (Spira got attention in 2010 for research suggesting that the natural compound myo-inositol could turn off incipient lung cancer in smokers.)

Those who walk Commonwealth Avenue and have to dodge fumes from smokers on break may wonder about secondhand smoke. Research is mixed, but Spira, who researches the amount of smoke necessary to change gene expression and possibly lead to lung cancer, believes that it takes a big dose—perhaps exposure over months or years.

Almost half a century after the surgeon general first warned of smoking’s dangers, Spira says that even Hollywood is catching on that not all cancer victims heedlessly bring the disease on themselves. In 2011, he was a presenter at the Prism Awards, given for accurate portrayals of illness in entertainment media. He handed an award to an actress whose character on the soap opera The Bold and the Beautiful had lung cancer.

The character was a nonsmoker.

WASHINGTON, Dec. 21, 2012 /PRNewswire-USNewswire/ -- Today, the Senate gave its final approval to legislation containing the Recalcitrant Cancer Research Act that gives priority status to lung and pancreatic cancers for the development of a master plan of action that the National Cancer Institute must send to Congress and make publicly available within 18 months. 

The President is expected to sign the bill, the Defense Authorization Act for Fiscal Year 2013, which contains the cancer legislation. 

"This is a holiday gift for all the lung cancer advocates around the country who came to Washington in person, or called and emailed their representatives to make lung cancer a priority for federal research," said Laurie Fenton Ambrose, Lung Cancer Alliance President & CEO.

The Senate action today concludes the long congressional journey of the Lung Cancer Mortality Reduction Act that started in 2006 with a resolution introduced by then Senators Hillary Clinton, Chuck Hagel and Mike DeWine.

The bill now has to be enrolled and officially signed by the President before becoming law. 

Originally published at espnW.com on Dec 11, 2012 by Sarah Spain

A couple of Saturdays ago, while you were watching college football or out buying a Christmas tree, 24-year-old Kelcey Harrison was running the last 20 miles of a 3,500-mile "jog" from Times Square to her hometown of San Francisco.

Harrison, who graduated from Harvard, where she played soccer, is young, healthy and motivated. By the time she completed The Great Lung Run, she had logged 30 miles nearly every day for four months straight.

Harrison ran because she can. And because her lifelong friend Jill Costello -- who was also once young and healthy and motivated -- cannot.

On June 6, 2009, Costello, then a junior at Cal and a member of the crew team, was diagnosed with lung cancer. The disease was already at stage 4 and had spread; she was given about a year to live. Costello spent that year finishing school, earning Pac-10 Athlete of the Year honors, acting as vice president of the Panhellenic Council and doing tireless work for lung cancer charities -- all while undergoing chemotherapy.

In May 2010, doctors told Costello she could not be cured; all they could do was try to make her last few weeks more comfortable. In those last weeks she walked across the stage at graduation (with a 4.0 GPA) and helped Cal to a second-place finish at the NCAA crew championships.

"Jill was really strong," Harrison said. "She was really confident that she was gonna be the one to beat stage 4 lung cancer. She was very convincing in her argument; even at the very end we really believed she was going to be the miracle."

Costello died June 24, 2010.

No. 1 Cancer Killer

A young, vibrant nonsmoker, Costello was the last person anyone would expect to get lung cancer. But 20 percent of the more than 20,000 women diagnosed with the disease each year have never smoked. Lung cancer is the No. 1 cancer killer in the United States, taking more lives than colon, breast and prostate cancer combined.

Despite the staggering stats, there are no pink ribbons worn or mustaches grown in the name of lung cancer. There is, instead, a stigma that the disease is self-inflicted; an illness brought on by a life of smoking. Research and funding is limited and the five-year survival rate for lung cancer is 15.5 percent; it hasn't budged in 40 years. More than half of all people with lung cancer die within a year of being diagnosed.

Costello hung on for 18 extra days.

So Harrison runs to raise money and awareness about the disease that took her friend's life. The Great Lung Run has raised more than $150,000 for Jill's Legacy, an advisory board to the Bonnie J. Addario Lung Cancer Foundation, the charity Costello worked closely with in the months before her death.

Darby Anderson, the director of Jill's Legacy, said at first she didn't think Harrison would follow through with her plan to run across the country.

"I thought she was nuts," said Anderson, who was a sorority sister and close friend of Costello's. "I told her to call me back when she had an actual plan and then we would take her project from there. … [That] April I saw her in D.C. when I was there for our Jog for Jill Georgetown and she had a website, route, places to stay and was ready to actually make this happen. I was blown away."

Harrison was up early every morning to jog her 30 miles, taking a day off every 10 days or so to let her body rest. She took a break to walk every once in a while, but never stopped moving until the 30 miles were finished.

"It's just like getting up and going to work," Harrison said. "Sure there are days where it wasn't the first thing I wanted to be doing but that was my routine and my job at the time, so just gotta get up and do it."

Harrison's not sure how, but after 3,500 miles, she feels OK.

"I don't have an answer as to why I'm holding up so well," Harrison said. "It's a mystery to me just like everyone else. … People said they think I have the right motivation and someone special looking over me."

Harrison ran solo for the first six weeks of her trip, pushing her belongings in a jogging stroller and staying with hosts who would pick her up at the end of each run and drop her off the next morning where she left off. Eventually one of her friends from Jill's Legacy joined her on the road in a donated car, driving her to and from hotels along the way.

(The donated car, by the way, was a gold Chrysler 300 with 22-inch rims. When their first donated car lost its power steering the girls ended up at Oscar's Auto Salvage in New Mexico, hoping to sell it and rent one for the remainder of the trip. Instead, Henry, the shop's owner, offered his own tricked-out car for the final months of the trip.)

Just another day at the office

Running more than a marathon every day for four months sounds nearly impossible, but Harrison said from the start that if Costello could accomplish as much as she did in her last year of life, all while being ravaged by chemo, then a simple jog across the country was nothing.

"I spent a week with her on the road and she'd finish up her run and it was like she had just finished a day at work," Anderson said. "We would hang out, head to dinner, chit-chat and do completely normal things, except that she had just run 30 miles that day. … Kelcey has more courage and inspiration than anyone I have ever met and I am so grateful to have been able to just be a small part of this huge adventure."

The last part of The Great Lung Run was across the Golden Gate Bridge to Crissy Field. The Cal crew team, Harrison and Costello's high school crew team and other friends and family joined in for the final miles.

The official completion of Harrison's run took place last Thursday -- a celebratory cocktail party at St. Ignatius College Prep, the high school she and Costello attended. Harrison had been honoring Costello's memory with each step of her journey, but returning to a place where they grew up was difficult.

"It's not hard to think about Jill all the time because she sort of turns into this image, a legend" Harrison said. "What's hard is when you find those moments to step back and remember Jill your friend. Jill who did Halloween costumes with me for 16 years of our lives. That's where it's tough.

"It's become bigger than her, which sometimes is sad because you feel like you're forgetting a little bit of your friend, but in her last year of life that's really what she was aiming for. All of us at Jill's Legacy are really proud of what we're accomplishing but also really sad about [the reason] we're all involved in this."

Harrison will wake up this week with no miles to run, no path to follow. She's no longer interested in attending law school, but isn't quite sure what she wants to do instead.

"I'll take a little time to relax and then try to figure out what's next," she said. "I'm looking out for jobs, but I'll always be tied to our foundation and the cause of lung cancer. We'll always have jogs, bar events, restaurant things; anything to get more young people involved in lung cancer awareness. That will continue forever."