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BY GUEST BLOGGER | MAY 1, 2012
To paraphrase Winston Churchill, "This is not the end, but it is certainly the beginning of the end." I firmly believe that 2012 could be remembered as the year that changes the course of lung cancer given the efforts under way by patient advocates and medical leaders to bring responsible, safe and effective early detection to the at risk public.
In addition, by bringing best practices in a continuum of care linking prevention, early detection and treatment, we will stimulate more research and new approaches to identifying those at risk, preventing and treating lung cancer, more effective smoking cessation protocols and a better understanding of other causes of lung cancer.
Last February Lung Cancer Alliance has launched first of a kind "The National Framework for Excellence in Lung Cancer Screening and Continuum of Care," guidance for both consumers at risk as well as sites offering care.
The National Framework presents in three parts. First, it advises the public on their rights--starting with the right to know if someone is at risk for lung cancer. Risk factors include smoking history; family history of lung cancer; environmental exposures to radon, secondhand smoke, asbestos and other known carcinogens; exposure to battlefield fuels; history of other lung diseases. If someone has one or more of these risk factors, they need to talk to their doctor about screening with a low dose CT scan.
Second, the National Framework lays out guiding principles of screening and the continuum of care for screening sites. LCA contacts each one to ascertain that they are a multi-disciplinary team and that they follow a coordinated continuum of care for screening, diagnosis and disease management that complies with comprehensive standards based on best published practices. Once identified, LCA lists these sites and alerts the public on www.screenforlungcancer.org.
Third, the National Framework establishes the Lung Cancer Screening Excellence Forum. This Forum will be comprised of leading medical and health professionals as well as industry and insurance representatives. The Forum is a mechanism for the discussion of how best to collect data on outcomes, analyze the data and build feedback improvements into the system of care. If tissue, blood, breath and urine samples are collected during the screening process, biomedical research into all types of lung cancer, precancerous conditions and improved treatments can be accelerated and better coordinated.
The time has come for lung cancer screening and its continuum of care to be embraced. It is a matter of life or death. If we move swiftly and responsibly we can reduce lung cancer mortality by half by 2020.
Laurie Fenton Ambrose
President & CEO
Lung Cancer Alliance
Lungcanceralliance.org
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BY KATHERINE LAGOMARSINO | FEBRUARY 14, 2012
I recently joined CURE as managing editor of books and special projects. While I have been in journalism for many years now, this is my first foray, as an editor, into the complex world of cancer. But as a daughter--well, that's a different story.
During one of my first staff meetings here, someone brought up the often-used analogies to describe the cancer experience: a battle, a journey, a roller coaster. But when I think of cancer, I always envision it as a marathon, admittedly, another well-worn metaphor. Perhaps that's because my father was an avid runner. He finished seven marathons in his lifetime, counted Chariots of Fire as one of his favorite movies (the theme song was one of his favorite songs), and he even founded a nine-mile running race in our hometown.
But in April 2000, my father's real marathon began when he was diagnosed with metastatic melanoma. The doctors figured it was from a large malignant mole he had removed from his leg 15 years prior, but that was only a guess. Melanoma can lie dormant for years before it resurfaces in places like lymph nodes, which is where my father's recurred. A small, seemingly innocuous lump on his groin.
My father was a doctor himself--an ophthalmologist--so he knew that his prognosis would not be good. And it wasn't; it was of the "get-your-affairs-in-order" variety. But, being a stubborn man, a first-generation Italian from Newark and the son of a steeplejack, Dr. Bill, as his patients called him, was just warming up. He had only begun preparing for what was going to be a grueling six-year run filled with fatigue, dehydration, pain and emotional exhaustion.
There were runner's highs, like when a limb perfusion appeared to work, followed by extreme lows, when the brain mets appeared. And then there were the second, third and fourth winds when promising new studies came out. On he went, plodding from surgery to chemo to radiation. From clinical trial to clinical trial. Along the course, family and friend had lined up to cheer him on, give him water and food or tend to his injuries. In June 2006, my father hit the wall. His melanoma could no longer be controlled. He was spent, and he wanted to enjoy the final leg of the race at a slow amble, absorbing the sights and sounds of the course and the gathering crowd. On November 11, 2006, he crossed the finish line at peace--surrounded by his biggest fans.
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BY ELIZABETH WHITTINGTON | FEBRUARY 7, 2012
As the nation prepared for Super Bowl Sunday, many were introduced to the story of Keasha Draft, the newlywed wife of retired NFL linebacker Chris Draft.
A beautiful love story, except that Keasha was diagnosed with lung cancer last year. She was 37 years old. Five weeks after their wedding, she passed away on Dec. 27. The ESPN video is below.
"She courageously faced lung cancer, showing us all with every breath that we all need to hold onto life and love with both hands for as long as we can." --The Chris Draft Family Foundation
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BY GUEST BLOGGER | NOVEMBER 28, 2011
There will be more than 220,000 people diagnosed with lung cancer in 2011. They will be our brothers, sisters, grandparents, co-workers, closest friends. They will be our parents.
Last year, my mom was diagnosed with stage 4 lung cancer. She's never smoked. That's a fact that I always feel obligated to share when talking about her diagnosis, but sincerely hope one day won't be such an entrenched part of the lung cancer conversation.
Our family was shocked by the diagnosis and even more appalled to learn that lung cancer is the No. 1 cancer killer among both men and women, accounting for more than 1 in 4 cancer deaths. Surely, we thought, a cancer this prevalent and virulent - one that kills 80 percent more women than breast cancer - must receive significant government funding and public support. We were wrong.
Women Paying a Fearsome Price
As a daughter, my thoughts quickly turned to the more than 105,000 women who are diagnosed with lung cancer each year. This is a disease that kills more women annually than breast, ovarian and uterine cancers combined. Over the last several decades, women have come powerfully and effectively together to organize, mobilize and build critical public awareness and support for the diseases that threaten them most, particularly heart disease and breast cancer. With lung cancer diagnoses among women up six-fold since 1930, I couldn't understand why women had not applied the same conviction, energy and savvy to lung cancer. Then I looked at the numbers.
Lung cancer is poised to take the lives of 71,000 women this year and up to now, there hasn't been much reason to be hopeful. The overall five-year survival rate lingers at 15 percent, where it has been for decades. While new treatments and funding have propelled the survival rates for breast cancer to 90 percent, lung cancer remains in an unfortunate area of catch up.
With so few survivors, it's difficult to build and sustain a movement. And for those lucky enough to survive this dreadful disease, a sense of community can be hard to come by.
Rebecca's Tale
For my friend Rebecca, who was diagnosed with lung cancer at age 28, living with a lung cancer diagnosis has been an isolating experience. "Like many Americans, I was clueless when it came to lung cancer," she says.
"Every October, for years, I would dutifully pin pink ribbons on my bags and participate in breast cancer walks in solidarity for women. But then when I was diagnosed with lung cancer, I learned that it kills far more people than any other cancer (breast, colon, ovarian, melanoma, brain and leukemia combined), and there were hardly any walks, ribbons or support groups out there. I felt alone."
Since my mom's diagnosis, I have spoken with so many women who echo Rebecca's feelings of isolation and loneliness. Lung cancer is a disease that has never received public attention or research dollars in proportion to its prevalence or virulence. Precious little is said or written about it. The result is that the most lethal cancer killer of all runs rampant.
Together, We Can Change This
Determined to turbo-charge the lung cancer discussion, my family recently launched a nationwide educational campaign – Leaders of the Lung Cancer Free World – intended to generate greater public awareness and understanding of lung cancer. With three non-profit partners – the CHEST Foundation of the American College of Chest Physicians, the National Lung Cancer Partnership and Uniting Against Lung Cancer – the Leaders campaign aims to focus public attention on this unrelenting killer that affects smokers and non-smokers alike. The campaign has four distinct target issues: women, political leadership, the smoking stigma and general public awareness.
There are many ways to get involved. You can sign a petition encouraging the President and Congress to declare lung cancer a national health crisis, donate to one of three partner organizations, ask your representatives to support the Lung Cancer Mortality Reduction Act, follow the campaign on Facebook and Twitter or take a pledge to stop smoking.
Anyway you slice it, lung cancer is a national health crisis requiring our attention. Over the next five years, more than 1,000,000 Americans will be diagnosed with lung cancer. They will be our mothers, fathers, sisters, grandparents, coworkers, closest friends. Together, we can help save many of them.
Arielle Densen is a co-founder of Leaders of the Lung Cancer Free World, a lung cancer advocacy group, and created the James Sivartsen Prize in Pediatric Cancer Research at the Hebrew University in Jerusalem. For the past six years, Arielle has served as a wish granter for the Make-A-Wish Foundation.
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BY ELIZABETH WHITTINGTON | NOVEMBER 17, 2011
Today is the American Cancer Society's Great American Smokeout - a day smokers can circle on their calendars as the day they quit smoking.
While smoking has been most recognizably linked to lung cancer, quitting can also reduce your risk of bladder, head and neck, pancreatic and esophageal cancers - to name a few. And it's never too late to quit.
On my flight back from meeting with the American Cancer Society this week, I sat next to a man who mentioned that his father was recently diagnosed with lung cancer. He mentioned his father had been a smoker, but had quit and started treatment. It's never too late to quit. There have been several studies showing patients who quit smoking during treatment have a better response than those who continue to smoke.
Thankfully there are resources out there to help you to quit - and to help those you love to quit, including:
Centers for Disease Control and Prevention
For those who continue to struggle with tobacco addiction, I thought it might be nice to hear from someone who has been there - President Obama. "The fact is, quitting smoking is hard. Believe me, I know."
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BY GUEST BLOGGER | NOVEMBER 16, 2011
A few years ago, I saw Monty Python's Spamalot, the stage musical version of the 1975 comedy film Monty Python and the Holy Grail. At the souvenir stand, I could not resist the T-shirt with the words, "I'm not dead yet." I wore it a few times, and eventually it worked its way to the bottom of the pile in the closet and was forgotten. Little did I realize then just how much that phrase would come to mean this year.
In March, I went for a routine checkup and, as a longtime smoker, I agreed with the doctor that a chest X-ray should be done. Long story short, I was diagnosed with stage 2B non-small cell lung cancer in April. Actually, I was diagnosed with lung cancer; staging was done at the cancer center I went to 10 days later.
I chose to dive into learning all I could about lung cancer during those 10 days between appointments. It is amazing how little hope there is on the Internet. I soon came to realize that the one phrase that seemed to be missing from all of the articles I read was "if found early."
"If found early" is a phrase that is pounded into our heads in all of the cancer awareness commercials.
That same lack of hope started to appear on the faces of family and friends as I broke the news to them. Each of them had a personal link to a sad story about lung cancer. They all came up with a "if you need anything" or "my prayers are with you." Very few said anything like "you can beat this" during that first conversation. Thank goodness I have a longtime friend who not only beat lung cancer, but he did so nearly 10 years ago! This knowledge, along with his constant encouragement, gave me the strength to scream, "I'm not dead yet!" every time I read an article or saw someone trying to hide a tear when they saw me. OK, I didn't really scream it at people, but I did point to the phrase on that T-shirt.
I wore that shirt two or three times per week as I went through two rounds of two chemo meds, 28 days of radiation and the weeks between the end of treatment and surgery. I lost a lot of hair and got dark circles under my eyes. I was very tired most days. Instead of letting myself get worked up while waiting for all the pre-op tests, I took a trip to Maine and Canada to do and see things I had never experienced before.
In August I had extensive surgery to remove the lobe of the lung the tumor was in, as well as a few ribs and parts of some vertebrae that the tumor had been touching. While I spent a week in the hospital recovering, when I could get online, my status updates always included the phrase, "I'm not dead yet." My surgeons told me that the surgery went well and they would see me in two weeks. Recovery was very long and painful, but that phrase became my mantra, and I kept chugging along.
I'm not dead yet! And I don't plan to be for a very long time! At my post-op appointments I was told that I had a "complete pathologic response," which means that the cancer had been completely killed even before the surgery. Here I was, less than five months later, being told I was cancer-free.
Lung cancer is not a death sentence. I know this, because: I'm not dead yet!
Mary Tracy-Dolobowsky is a mother, wife, biker, nature/wildlife photographer, two-time cancer slayer (melanoma & lung) and lung cancer awareness blabber-mouth.
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BY ELIZABETH WHITTINGTON | SEPTEMBER 1, 2011
Late Friday, Aug. 26, the FDA announced it had granted accelerated approval of crizotinib for patients with advanced non-small cell lung cancer (NSCLC) who test positive for a specific gene mutation.
Crizotinib, which was given the brand name Xalkori, has made news since results of a clinical study showed that it delayed tumor progression in patients with NSCLC who had a mutation in the ALK gene. The approval was based on two studies that showed a response rate (shrinkage or stabilization of the tumor) of 50 percent and 61 percent, respectively. Overall survival is still being evaluated, and a phase 3 trial is ongoing for Xalkori to receive full approval from the FDA.
The mutated ALK (anaplastic lymphoma kinase) gene was first identified in lymphoma in 2004, then in lung cancer in 2007. The mutation actually occurs when parts of chromosome 2 breaks off and reattaches at a different location on a chromosome - fusing the ALK gene to the EML4 gene. In 2009, a review in the Journal of Thoracic Oncology showed the mutation to be a cause of about 4 percent of NSCLC cases. In less than a decade, researchers have identified a mutation, developed a drug to target it, tested the drug and succeeded in getting it approved.
Although it only applies to a small population of lung cancers, the total number of patients who could benefit from Xalkori is estimated to be around 5,000 to 11,000 patients a year.
"It's a good day for lung cancer patients, especially those with an EML4-ALK (mutation)," said Paul Bunn, MD, professor of medicine and the James Dudley chair in cancer research at the University of Colorado in Denver at a press briefing held on Aug. 30, who predicted that the recent approval marks a paradigm shift in the care and management of patients with lung cancer.
Also approved is a companion diagnostic test called Vysis ALK Break Apart FISH Probe Kit that will identify patients who have the abnormal gene. While the mutation is more commonly seen in nonsmokers, there are no set clinical factors that identify patients who may have the mutation. "We feel that it is appropriate to test all lung cancer patients," Bunn said.
The test will also prevent patients who would not respond to Xalkori from taking a drug that would not be beneficial – saving them time to try other therapies. Xalkori is a pill taken twice a day. Based on the approval, Xalkori is taken by itself, but there are studies looking at its effectiveness when combined with other drugs, including Tarceva (erlotinib), another targeted agent used in lung cancer. Side effects of Xalkori taken alone include diarrhea, vomiting, edema, constipation and vision disorders. It has also been associated with life-threatening pneumonitis (1.6 percent).
The cost of Xalkori is estimated to be $9,600 a month, and the test will likely cost $1,500. Pfizer, the drug's maker, has launched First Resource, a program to help patients pay for the medication (877-744-5675; xalkori.com).
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BY DEBU TRIPATHY | AUGUST 28, 2011
With all the news of cancer drug shortages and the FDA's controversial decision to withdraw approval of Avastin (bevacizumab) for breast cancer, we are also getting some positive developments.
Just recently (on Aug. 26), the FDA granted accelerated approval to Xalkori (crizotinib), the newest member of an emerging generation of "niche" drugs. These are drugs that work in very defined subsets of patients, based on certain biological characteristics.
In the case of Xalkori, this is confined to the approximately 3 to 9 percent of patients with non-small cell lung cancer (NSCLC) who carry a chromosomal translocation that results in overexpression of the ALK protein (anaplastic lymphoma kinase). In fact, the approval of this drug is accompanied by the approval of a gene-based test to detect this translocation in tumor tissue. This approval comes on the heels of the approval of Zelboraf (vemurafenib) just eight days earlier for advanced melanoma, and again, only for the subset who harbor a mutation in the BRAF gene, and also approved with a diagnostic kit called the cobas 4800 BRAF V600 Mutation Test. In this case, the mutation is more common, seen in about half of all melanomas.
The big question is whether these two approvals herald the new age of personalized drugs. The now old story of Herceptin that many regard as one of the first targeted therapies, was spread out over 17 years from discovery of the gene to drug approval (or 11 years if you go from the discovery of HER2 amplification in breast cancer).
The new generation of drugs is being developed in a just a few years based on our exponentially growing body of data on mutations carried in cancers and new clinical trial designs that rapidly test drugs and verify biomarkers that predict response. Moreover, they seem to be quite effective with a higher percentage of patients responding, but not to the point that permanent cures are expected.
One can only hope that we are truly in the new era – and there are several indicators that this is the case. The Cancer Genome Atlas (TCGA) program is one of several worldwide that is collaboratively sequencing tumor genomes. Drug companies are investing more effort into biomarker analyses and integrating them earlier in the clinical trial process. Healthcare reform is demanding that drugs have a larger impact and that they not be used indiscriminately. Finally, the public's expectations are rising – they want more information about their cancers and access to clinical trials.
While it is possible that the initial wave of "low-hanging fruit" of "druggable" gene targets will soon be exhausted, it is more likely that we will have more targets and drugs than we can test. The bottleneck will really be in the patient clinical trials and how quickly and widely they can be deployed and fully enrolled. There will still be negative trials and other disappointments, but perhaps we are entering a new era where the bar of success is being raised.
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BY LINDSAY RAY | AUGUST 3, 2011
How do you make cancer funny? I guess the better question is how do you make cancer funny and then convince thousands of people to go see a movie about it? Last night I, along with our intrepid intern Taylor Walker, got to see an advanced screening of 50/50, which is a dramedy about a young man's cancer journey after he's been diagnosed with a rare form of spinal cancer and given even odds for his chances of survival; it stars Joseph Gordon-Levitt and Seth Rogen.
Now, I will admit that I was predisposed to like the movie because I'm fond of the actors, but I genuinely enjoyed the film. It was funnier and more touching than I thought it would be, and yes, I teared up a little and laughed a lot. And as an added bonus, CURE is featured in one of the scenes at the doctor's office. You can try and spot our Spring 2008 issue in the film; it's a bit like trying to spot Alfred Hitchcock in one of his famous cameos in his movies.
(NOTE: I specifically left out many details, so anyone who wants to see it can still enjoy the full experience.)
50/50 might start out like any other raunchy comedy you'd expect to find Rogen playing a wisecracking buddy in, but the movie quickly shifts focus to Adam (Gordon-Levitt) and how he and those around him handle his cancer diagnosis and treatment. And although I've never had cancer, I have had friends and family (all of them young adults) diagnosed with cancer and have gained some knowledge about the specific issues young cancer patients face through my work at CURE. Gordon-Levitt's portrayal of Adam seems like an individual journey as well as one of the everyman as he encounters these issues. The familiar situations that pop up following Adam's diagnosis--uncomfortable social situations, an overbearing mother who wants to move in, medical marijuana--are all played for broad comedy while still being grounded in realism.
And the movie never loses its irreverent edge while exploring some of the more complex issues, such as dating after a diagnosis and mortality. The balancing act between humor and drama is deftly handled by the cast and the writer, Will Reiser, who based the script on his own experience with cancer. In between the gross-out jokes and situational humor you can feel Adam's sense of fortitude and alienation and anger.
The young adult cancer community, including Planet Cancer and I'm Too Young for This! (i[2]y), seem to be excited for the movie because it doesn't give cancer the whitewashed Hollywood-treatment but rather hones in on real situations young adults face, such as feeling isolated or being the only one in the chemo room under the age of 50.
As someone who has loved ones who've had cancer, what I particularly related to in the film was Adam's relationships with those around him. While the story is very much about Adam, the ripple effects of his diagnosis affect the other people in his life in sometimes unexpected ways. It's a great reminder that everyone can be touched by cancer in some way and that even the most well-meaning of loved ones might not know all the right things to say or do. Just like Adam is a "newbie" to cancer, so are his friends and family.
So how did the filmmakers make cancer funny? They didn't shy away from the ugly side of cancer or handle it with kid gloves or pretend that it isn't a serious illness. Instead, they treated cancer like they would any other part of life; they uncovered the dark humor in the situation and infused it with warmth and understanding. So it's more than just a funny movie about a guy hoping to live after cancer. It's about all the aspect of a man's life--the good, the bad, the ugly--as he faces a life-changing situation.
Are you planning to see the movie? If so, what are you hoping to see in it?
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BY ELIZABETH WHITTINGTON | MAY 26, 2011
This past weekend, Lena and I went to the inaugural Free to Breathe 5K in Dallas. The event boasted more than 800 participants (and more than 600 runners/walkers), which is not too shabby for a first-year event.
Free to Breathe is a lung cancer organization that hosts these events all over the country. Recently, it has also joined with the National Lung Cancer Partnership.
The event held a special place in my heart because my great aunt, Sister Elise Todd, who I was named after, died of lung cancer a few years back. I was working for CURE when she was diagnosed and knew the prognosis would be bad. She went through her treatment and called herself a survivor until her recurrence a few years later. The disease took her in 2008.
As you looked through the crowd on Saturday, you could spot the survivors. But unlike other cancer runs I've participated in, there weren't a lot of survivor t-shirts being worn. No crowds of pink or blue; I think I counted about four green shirts. One was Charles, who spoke to the crowd at the beginning of the race. He told of being diagnosed with prostate cancer, and on an incidental scan, they caught his lung cancer early. He told us he was a non-smoker.
It seems that many survivors feel compelled to share whether they were a non-smoker or not because we have done such a good job promoting smoking cessation and the link between tobacco and lung cancer. Unfortunately, this has also created a stigma and a sense of guilt or blame for the patient.
At the race, I had overheard someone mentioning that a lung cancer survivor instead tells people she's had breast cancer to avoid the stigma of lung cancer. Thankfully at events such as Free to Breathe and other lung cancer-centric meetings, survivors have a voice and can proudly say they've beaten the disease.
I won't tell you whether Sister Elise was a smoker or not, because it doesn't matter. She was a lung cancer patient, and she didn't deserve lung cancer. No one does.
Lung cancer is one of the most common cancers and one of the most deadliest, but it lacks the research and funding of other cancers--one of the problems organizations such as Free to Breath is trying to correct. And we are making progress. A new treatment for a subtype of lung cancer, primarily found in non-smokers, was submitted to the FDA for approval just this month.
We're tackling lung cancer, probably more than any other cancer, with a three-pronged approach: prevention, screening and treatment, and rates of lung cancer in the U.S. are decreasing. So, with these inroads, although minor, let's hold our tongues when we want to ask: Smoking or non?
What limits our success for lung cancer is not the lack of ideas--we have plenty of ideas-- it's the lack of funding. To get funding, you need awareness and you need events like this." –Joan Schiller, president and founder of the National Lung Cancer Partnership, Deputy Director Simmons Comprehensive Cancer Center at University of Texas Southwestern
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