Top 5 for Lung Cancer in 2014

2014 Top 5 LC Milestones_image

This has been a groundbreaking year for lung cancer advancements, not only for our community, but the greater cancer community. Below are the top five milestones that have been reached for lung cancer in 2014.

  1. Centers for Medicare and Medicaid Services (CMS) Recommend Covering Lung Cancer Screening
    • The November 10th CMS draft decision is the last major piece in a long series of validations, including the United States Preventive Services Task Force (USPSTF) final recommendation for annual lung cancer screening for those at high risk, reaffirming the lifesaving benefits of screening. The final decision, which almost always reflects the draft recommendation, will be released on February 12, 2015.
  1. National Cancer Institute (NCI) Issued New Scientific Framework for Small Cell Lung Cancer
    • On July 1st NCI presented to Congress a scientific framework that lays out important steps needed to make advances in small cell lung cancer, one of the most lethal forms of the disease. The report was mandated by the Recalcitrant Cancer Research Act of 2013.
  1. Congressionally Directed Medical Research Program (CDMRP) Approved Another $10.5M for Lung Cancer Research
    • On December 13th, CDMRP approved an additional $10.5M towards the Lung Cancer Research Program, bringing the total federal research funding for lung cancer to $89.5M.
  1. Kentucky LEADS (Lung Cancer. Education. Awareness. Detection. Survivorship) Collaborative Launches
    • On November 12th the University of Kentucky, the University of Louisville and Lung Cancer Alliance partnered to lead the first of its kind project to reduce the burden of lung cancer in the state of Kentucky, which has more cases of lung cancer than any other state.
  1. Activation of groundbreaking clinical trial for Squamous Cell Lung Cancer, Lung Cancer Master Protocol (Lung-MAP) trial
    • On June 16th Lung-MAP, a multi-drug, multi-arm, biomarker-driven clinical trial for patients with advanced squamous cell lung cancer, was announced. This innovative approach to clinical testing is poised to usher in one of the most dramatic advancements in cancer research that we have seen in years.

We know 2015 is going to be an even bigger year so stay tuned!

Jennifer’s Story

Jennifer with her husband and son

Jennifer with her husband and son

By Brent Schweisberger

The phone rang on a Friday afternoon. “Hi, Jen.  What did they find out?”

“Dad, they told me I have cancer.”

Any parent’s response would be similar – I pulled over the car immediately, tried to make sense of what Jennifer was stammering through her tears, and in complete denial that lung cancer could strike a 30 year old never-smoker, faced this cruel disease head-on.

For three years now, our family has traveled on what Jennifer so aptly dubbed the “speeding cancer train.” We learned that when there is no knowledge, by definition all you have is fear.  As knowledge slowly begins to build, fear begins to dissipate.  As fear wanes, hope grows, and resolve becomes easier to justify. We know more about small cell neuroendocrine carcinoma of the lung than we ever wanted to learn.

It seemed so easy at first.  After the diagnostic tests, I was excited for Jennifer on her first day of chemo.  It was a watershed moment, when her cancer finally found an adversary.  That day, the healing would begin, and we found a glimmer of hope.  By the end of the first round of chemo, Jennifer reported a lessening of the pressure in her airways.  Could it be working that quickly?  Was cancer miraculously giving up after only one round?  Optimism grew.  Jennifer proclaimed she was going to kick cancer’s butt.

Brent and Jennifer

Brent and Jennifer

On a gray December day later that year, having endured four rounds of chemo and weeks of radiation, her radiologist called with the most recent scan result:  the mass had completely resolved.  It was over!  As she drove past a church, a lone bagpiper was playing a simple but familiar tune which tumbled onto the street:  it was Amazing Grace, indeed.  As her tears flowed, Jennifer knew it was a sign from her beloved Grandmother who had passed a few years before.  “It’s not your time yet, Jen.”

After some preventative treatments and scans, Jennifer cooked, gardened, worked, enjoyed her marriage, and embraced life.  Soon, she even had hair again.

Fifteen months later, Jennifer and her husband presented us with fabulous news.  We were finally going to be grandparents!  We celebrated the coming arrival and planned all of the associated events.  But we didn’t plan for more cancer.

Months later, a lump appeared in Jennifer’s lower back and biopsy confirmed the neuroendocrine cancer had returned.  Scans showed it was also in her liver, and she was 22 weeks pregnant.  Now we had two lives directly impacted, and treatment was challenging.  After many consultations, chemo began anew, with a cohort of specialists monitoring every aspect.

By late in the pregnancy, the baby was no longer growing.  Chemo had impaired the placenta, and the decision was made to bring the baby early.  As I held our new grandson the first time, I recalled Jennifer’s arrival, our firstborn, and felt again the quiet way she forever altered my life that day.  Now we needed to get her healthy once more.

Chemo restarted, and radiation was needed for her liver.  For some time, things looked good.   But then, the new bomb:  “Dad, there’s no way to say this other than to just lay it out there.  I have a new tumor and it’s in my brain.”

It wasn’t a very pleasant ride home from work that afternoon.  I prepared to break the news to my wife.  A long hug and some tears later, we talked to Jennifer and resolved anew to beat this.  We knew the odds were longer, but Jen was still going to kick cancer’s butt.  If she says she is, we aren’t about to quit on her.

It’s a long journey, but we walk hand in hand with Jennifer, her two sisters, and their families. Her battle is not yet won, but our family stands steadfastly together in unquestioned support of our brave young woman.

Never Stop Creating

Jon and Robyn on their wedding day

Jon and Robyn on their wedding day

By Robyn Young

In 2013, my boyfriend of eight years was diagnosed with Stage IV lung cancer. He was 27 years old.

I didn’t believe it. I thought it was a lie. At first, because of his age, he was misdiagnosed with a different cancer. He underwent chemotherapy. It didn’t work. At our follow up scan, the one that was supposed to tell us he was 100% cancer free, we found out, instead, it was lung cancer.

Lung cancer is a terrible disease. What makes it worse is the stigma associated with it. Before our diagnosis, I believed only elderly people who had smoked for decades could get lung cancer. I was wrong. America is wrong in the way lung cancer is depicted. Young people, who have never smoked a cigarette, can get lung cancer too.

Since, we have met many young people, some around our age, some younger, who have the same disease. We are all fighting for our lives. I ask, no, I beg, you to join us.

Jon and I met in art school. He was a filmmaker and I, an actor. The perfect love story. We have been chasing our dreams of making movies ever since! We weren’t married when he was diagnosed, but that soon changed and we were united in marriage on the exact anniversary of our very first date.

Just because lung cancer is a part of our lives, doesn’t mean we have to stop creating. In fact, we create more now. Just this past summer, Jon wrote and directed a short film entitled Nirvana: a short film about cancer, based upon his experience. The film is a love story between the patient and caregiver, between life, death, and the possibilities that lie in the unknown. He is currently editing the film. In addition, we spend most of our time creating: developing new ideas, writing, filming, and more.

Nowadays, we don’t plan for the future, but strive to live in the moment. Because of new targeted therapy medications, created not too long ago, Jon is doing very well. For this, I am most grateful.

Lung cancer is severely under funded. In comparison to less deadly cancers, the statistics are unacceptable. Science and research have brought us to a very exciting time in medicine. Because of this, I ask for more awareness and funding for lung cancer. When this happens, the doctors can keep creating new drugs that will one day cure lung cancer. I believe it is possible in our lifetime. This cause is so important to so many. Please stop ignoring lung cancer. My young life depends on it because the person I love depends on it. Your life may depend on it too one day.

To learn more about Nirvana: a short film about cancer CLICK HERE: https://www.facebook.com/pages/Nirvana-a-short-film-about-cancer/598777076879059

To DONATE to lung cancer research CLICK HERE: http://www.lungcanceralliance.org/ways-to-give/

Keeping Time

by Karen Tollefson

The Time Keeper for Karin Tollefson's Blog 2014

The Time Keeper

This painting hung in our favorite southern California gallery and it drew both my husband and me to it each time we visited. Soon it became a favorite part of our collection.  The Time Keeper, as it was titled, was nothing more than a special piece of art hanging on the walls, until one day the irony of trying to “keep time” finally caught up with us.

A cancer diagnosis will do that to you; change your point of view.  Time is not something to be kept; it can’t be stopped, preserved or reclaimed.  When you are told you have cancer, time becomes a privilege, and with my family being handed two cancer diagnoses within a few short years, this painting became a poignant reminder that every moment matters.

When my mother was told she had lung cancer, it was as if time stood still and was racing all at once.  There was an urgency to act, start therapy, fight for her life, but all we could do was “hurry up and wait.”

Life as my mother knew it was gone in an instant, but it took time for her journey as a cancer patient to commence.  It was three months from when I first suggested her persistent cough might be more than allergies to when her treatment would begin.  It felt like a lifetime and it felt like no time at all.  Now, it strikes me that one month about lung cancer means something entirely different to a person living with cancer.

This month’s recognition is an important milestone, raising awareness, creating advocacy and generating momentum.   Lung cancer is gaining much-needed attention. For me, having lost a husband to leukemia and a mother to lung cancer, I am proud to speak out for those who can no longer advocate for themselves.

Long before I was ever personally touched by a cancer journey, my career was in oncology research and development. And now, with the lines of my private and professional life irrevocably crossed, my career has become all too personal.  I am reminded daily of the urgency for what we do and although continuous innovation has resulted in dramatic improvements in patient care, we still have far to go.  Oncology research is not a simple endeavor and by its very nature, cancer research has proven to be a cumulative process, with each advance building on that of a previous discovery.  It takes time.

As November’s spotlight on lung cancer comes to a close we should acknowledge the progress made in understanding the underlying biology of the disease and recent treatment advances.  Still, lung cancer remains the leading cause of cancer related mortality in the world and we have far to go to develop innovative treatments, improve early detection and eliminate stigma. We must keep the urgency- people living with lung cancer need us, far beyond November.  After all, there is a lot of living that can occur in a month when you have the gift of time.

I Am the Face of Lung Cancer

By: Deena Cook, lung cancer survivor and advocate

In the fall of 2011 my husband had an appointment with our PCP and asked me to come along because I had been coughing for 10 days or so and he thought I should see the doctor. That appointment led to a chest x-ray then CT scans and PET scans.

In July 2012, after monitoring several nodules for months, it was decided to remove and biopsy the larger nodule that had changed in appearance. I went into surgery not knowing if I had cancer. I came out without a lower left lobe and a diagnosis of stage one adenocarcinoma. I recovered well, went back to work six weeks later and was told to come back in six months for a check-up. No follow-up treatment was required! Piece of cake! My husband and I were excited about our upcoming retirement at the end of the year and we anxiously awaited the arrival of our 7th grandbaby.  Life was wonderful!

Deena, her husband Roger and their seven grandchildren in July, 2013

Our retirement in January of 2013 was celebrated with my six month CT scan showing that a nodule in my upper left lobe had changed. The biopsy showed cancer again. My second surgery took place in April, nine months after my first surgery and four days after our newest granddaughter was baptized.

My second tumor was also stage one adenocarcinoma. A second primary tumor. The official term for my lung cancer diagnosis is Synchronous Multi-primary Lung Cancer.

My second lung cancer diagnosis woke me up. I started to research this disease and became proactive in my care. I am among only 15% of lung cancer patients who are diagnosed when the cancer is localized. It was found incidentally. From all that I have now learned about lung cancer, I KNOW how lucky I am.

I wanted to make sure that others wouldn’t have to be lucky to be diagnosed at early stage for lung cancer. I have become a Lung Cancer Activist.

It took time to get over the stigma associated with lung cancer. I take responsibility for “being cool” and smoking when I went off to college, but I quit in 1988. I did what our government told me to do, but I still have lung cancer.

I am committed to fighting the stigma; to insisting that our government fund lung cancer research proportionate with its public health impact; and to mandating that a portion of the billions of dollars collected each year from tobacco taxes be used for lung cancer research and patient healthcare.

I am the face of Lung Cancer and intend to stay that way for a long time! By the grace of God, a loving husband and a diligent PCP, we just celebrated another stable CT Scan! Wooo Hooo!

 

I’m No Great Hero

By: Karen Rak

My older sister was diagnosed with lung cancer in July of 2005.  She died less than four months later.  She had quit a four-pack-a-day smoking habit some 25 years earlier.  A woman of athletic ability and lots of energy, she had lived for five years in Afghanistan, regularly trekking in the high Himals, even while smoking.

Karen, just five days after her surgery!

Karen, just five days after her surgery!

So in January of 2006 I had my first low-dose computerized tomography chest scan. I qualified because of family history and smoking history (I had quit a longstanding two-pack-a-day habit in 1992.  I think it was that awful cough that convinced me).

As it turned out, I had several nodules in both lungs, so the 2006 CT scan became the baseline. I was scanned once a year from then on, to track any change in the nodules.  There’s nothing to the scan, by the way.

In 2010, my newly-hired primary physician refused to issue a prescription for that year’s CT scan because of the radiation in the machine, notwithstanding that the one chest scan contained similar amounts of radiation as mammograms (a successful method for detecting breast cancer early, when it can be cured).  “It’s dangerous,” my doctor said, “and I won’t be a party to it.”

So my gynecologist wrote the “low-dose chest CT without contrast” prescription.

In 2012, the scan exposed changes in one of my nodules.  It was followed up by a needle biopsy, then a minimally invasive, video-assisted wedge resection of the offending nodule. It was adenocarcinoma. Slow-growing cancer.

I was pronounced cured and discharged 48 hours later and was climbing Blue Hill Mountain in Maine 72 hours after that.

My family and friends were extravagant in their shouts of joy and relief and congratulations on “getting through it” and “you old trooper” and the like.  I have to tell you, it was not that big a deal.  Even the pain was minimal and didn’t last long.

The truth is, I’m no great hero, and this wasn’t hell. Early screening for lots of other cancers is standard, because it works; because early screening leads to a cure.

For more information about your risk and where to go to get screened visit: www.atriskforlungcancer.org.

One Magic Pill and 24 Months Later

by: Michael McCarty, lung cancer survivor and advocate

Michael M

Michael in a meeting on the Hill, September 2014

It was a hot day in early August, 2012 and I was out running and ran into some friends on the road and decided to join them.   I knew for the last several months that my running pace was off and my workouts were less than to be desired but I kept thinking I was simply lacking motivation after running a half-marathon earlier in the summer.

As the four of us started off, I called on my body to push itself and set a healthy pace but my body had no answer and its silent stubbornness left me frustrated.  And after falling behind from the group, I stopped running and started walking.  My friends were kind and tried to reassure me that the heat was the cause.  However, I knew better.  And less than a week later, I felt a lymph node to start to pop out on the right side just above my clavicle.

After x-rays, CTs, several doctors’ visits (the doctors knowing I wasn’t a smoker and in good shape could only believe that I had some type of pulmonary infection) and a referral to a pulmonary specialist who couldn’t see me for another eight weeks, I was able to get a general surgeon to do a biopsy on the lymph node.

I will never forget the day he called me into his office to tell me I had lung cancer and it was advanced.  My wife and I left the doctor’s office and we sat down in the first chairs we saw and I then pointed to the survival rate I had written down on a piece of paper and I started to cry.  And for the next month, I was lost in a fog of anxiety, fear and anger as to why this was happening to me – a 43 year old runner, a lifelong non-smoker, a husband and a father of three.   Prayer seemed to be my only comfort.

I was originally diagnosed as Stage IIIB (adenocarcinoma of the lung which quickly became deemed Stage IV).  As to no surprise, I was deemed inoperable but was able to get into a trial at MD Anderson.  After 11 doses of chemo and 38 trips to the proton center, I received the glorious news that I was NED.  This lasted for about 11 months until I went into the hospital with double pneumonia.

There I discovered I had pleural effusion, pericardial effusion, nine (9) cm mass in the right upper lobe, nodules on the left lung, cancerous tumor on the spine, cancerous lesions in the eyes, many lymph nodes lighting up throughout my chest, and two lymph nodes pushing against my esophagus preventing me from eating.

Even though I made it home, I was in tremendous pain, on oxygen 24/7 and during a short month’s time I lost 40 pounds.   My local oncologist gave me months to live as the cancer was spreading and spreading quickly.  However, I was tested for the second time for the ALK mutation.  This time, I unequivocally tested positive for the ALK fusion.

I was placed on XALKORI (crizotinib) and within a week, my pain was gone, I was off oxygen, and felt well enough to get into the gym (although only for a very light workout).  Within weeks, my family and I were vacationing in the Keys giving God praise for what we call the “Magic Pill”.  My first PET scan showed no evidence of my disease and my last scan confirmed that I remain NED.

My doctors cautioned me that I am not in remission but merely suppression.  Call it what you wish, I have been given time, precious time, and during this time, now two years and counting, I want to help organizations like Lung Cancer Alliance to develop awareness about lung cancer and ensure that lung cancer receives equitable funding for research.  Through research more drugs, like crizotinib, can be developed and hopefully not just providing survivors like me suppression but real life sustaining remission.

So get involved and set yourself free by helping others fight and beat this horrible disease. We too can build an army of survivors.

Raise Awareness from your Couch!

keep-calm-and-take-action-14

November is Lung Cancer Awareness Month and this is the time of year when our community comes together in the most united way to make some noise for lung cancer! Most of the activities involve events of some kind, be it a Lung Love Walk or a Shine a Light on Lung Cancer. We encourage you to sign up for one in your community.

However, if events aren’t for you or you don’t have time to attend, you can still make a difference…from your couch. Literally!

  • Use Your Social Media to Educate Your Friends and Family – Facebook, Twitter, LinkedIn, Instagram are wonderful platforms to get messages out to the public. We have some sample Facebook and Twitter posts that you can use throughout the month or just share some of ours!
  • Send a Letter to Your Local Newspaper – Write a letter to the editor and submit it to your local newspaper. Newspapers love to receive feedback and insight from readers within the community. This platform gives you an opportunity to tell your story, share some vital statistics on lung cancer or highlight the fact that it is Lung Cancer Awareness month. Here is a template letter to get you started!
  • Join Our Community  – Stay connected to the lung cancer advocacy community by signing up for our Weekly Breather, an email newsletter. You will receive relevant news, insights and calls-to-action to guide efforts in your local community.
  • Go Shopping  – Thanks to our partners, you can now raise awareness in style! When you buy a lung cancer awareness item, a percentage of your purchase will go to helping us provide lung cancer patients and their families with free support, education and referral services. These are great gifts for loved ones or just treat yourself!
  • Help Us Help Others – Make a donation! Monetary support is the backbone of our advocacy efforts. Give what you can and invite three friends to do the same. You can donate by texting SHINE to 27722 or visit our website to donate online.

The bottom line, there are no hard and fast rules about getting the word out about lung cancer. No matter what method you choose, you are making a difference.

by Chris Davis, Media Relations Manager

Can We Talk? About Lung Cancer?

Our passionate advocate, Sheila Ross

by: Sheila Ross, 14 year survivor and advocate for Lung Cancer Alliance

A memorial showing of a 2010 documentary on Joan Rivers was aired by American Masters on September 23, nineteen days after her death.  During a sequence in which she is urging her daughter, Melissa, to stop smoking, Joan says: “I went to a pulmonary guy today…he said…more women are dying of lung cancer than breast cancer and nobody is discussing it…”

Not “nobody,” Joan. Some people are. More each year, but still not enough.  Why aren’t they?

Based on the National Cancer Institute’s most recently updated estimates, as of 1/1/11 there were about 2.9 million women then alive who had been diagnosed at some point in their lives with breast cancer. That’s 13 times more than the 219,000 women then alive who have been diagnosed at some point with lung cancer.

These 220,000 cannot do it alone. Many of them are too sick or depressed to even try.

About 160,000 people a year die of lung cancer –  70,000 of them women – nearly twice as many as breast cancer. So lung cancer has touched millions of families and friends. Why aren’t they speaking out?

Why doesn’t the 2.9 million strong breast cancer community show more empathy about the biggest cancer killer of women? Why didn’t Joan speak out when she learned the truth? She said it “scared the bejeezus out of me.” Us too.

This October, while pink overshadows the statistics and companies profit from “pinkness,” why don’t we in the lung cancer community try to get answers to those questions instead of just- as Joan would say – “b—ing.”

So, can we talk?

 

 

A Tale of Two Cancers

Pat and Mike Harrell

Pat and Mike Harrell

By: Pat Harrell, lung cancer advocate and breast cancer survivor

When my husband, Mike, retired from the Navy in 2005 after 22 years of service we figured we would settle into civilian life the way countless military families have done over the years.  Little did we know that cancer would impact our lives so soon after making this transition.

After a flu-like illness prompted several doctor visits, Mike was diagnosed with Stage IV lung cancer at the age of 46. A CT scan revealed the cancer had spread from his lungs to his brain. To add to an already difficult situation, a year later, I was diagnosed with breast cancer.

A happy couple and two cancer diagnoses. That’s where the similarities end.

Fortunately, my breast cancer was caught early and I had a mastectomy. The cancer had not spread to my lymph nodes and I did not have to undergo any chemotherapy treatments. They tell me that my cancer has a low risk of recurrence. The resources given to breast cancer survivors are unparalleled. I always felt like I knew where I could find support when I was dealing with my illness.

Mike’s journey was very different. As a non-smoker, he had to deal with the stigma that often comes with having lung cancer. During one of our first meetings with his oncologist, Mike was asked, “When did you quit smoking?” I was stunned. Even a cancer doctor assumed that his diagnosis was the result of years of smoking. My mother, a long-time smoker, also passed away from lung cancer in 2004 so I was familiar with the disease, but the tone of people who spoke to my husband led me to think that they faulted him for his diagnosis even though lung cancer can happen to anyone regardless of their smoking habits. 20 percent of people diagnosed are individuals who have never smoked.

Pat on Capitol Hill with LCA President & CEO for the 6th Annual Summit

Pat on Capitol Hill with LCA President & CEO for the 6th Annual Summit this September

Thankfully, early into his diagnosis when answers and support were in short supply, Mike heard about the Phone Buddy program with Lung Cancer Alliance. He was paired up with someone who had survived his initial diagnoses for over 5 years giving Mike hope that he, too, could fight this disease. He even wondered aloud if he could “be one of the 2% who survive.” After a period of time, Mike also became a Phone Buddy and began helping others while he was enduring his own treatments which included a full brain radiation treatment among many other physically demanding therapies.

Last March, Mike lost his battle with lung cancer after 5 years. I truly believe he gained a sense of purpose by being helped in those early days through the Phone Buddy program and later volunteering to call others dealing with lung cancer. Through my experience, I have recognized how critical hope is in the cancer journey. No matter what cancer a person has, everyone deserves hope and support.  I’m grateful for the last few years we had together and even more thankful that he ended up finding the support to deal with his own diagnosis.

I realize now that support is the great equalizer in any cancer fight. No matter the outcome, people benefit from having someone on their side. Thankfully, Mike and I both gained that even though we had different paths after our initial diagnoses. Inspired by his efforts, I have continued his commitment to the lung cancer community through advocacy work to make people, whether at home or in our nation’s capital, more aware of the needs of lung cancer patients.  More must be done, but we are definitely on the right track.