What July 4th Means to a US Major General

Fireworks of various colors bursting against a black background

By Rick Sherlock, Lung Cancer Alliance Board Member and retired Major General, US Army

As a retired Soldier, I like to pause as we approach each July 4th holiday, think about what it means, and remember it as more than another wonderful day to spend with family and friends at a barbecue or watching fireworks.

General Rick Sherlock

General Rick Sherlock

We became a nation because of the strength of our founding fathers and the citizen soldiers that dreamed of and fought for our independence.  This year, on the 240th anniversary of our Declaration of Independence, we have the greatest military forces in the world.  They are an all-volunteer force who, along with our nation’s police, fire, and emergency medical services personnel, protects our nation, our Constitution, and our inalienable rights to life, liberty, and the pursuit of happiness.

Those Soldiers, Sailors, Airmen, Marines, Coast Guardsmen, and dedicated public servants continue to dedicate themselves to protecting the freedoms we may sometimes take for granted.

If you have an opportunity, please thank them for their continued service and for the blessings of Liberty we all enjoy.

Super Vic, Man of Steel

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Sara, Victor and their son, Gabriel

By Sara Elias

There are dates that hold in your memory for a lifetime; June 28th, 2008 … the day he proposed; September 26th, 2009 … the day we married; November 10th, 2012… the day our son was born. The years go by and while I can barely remember what I had for lunch yesterday, I can tell you minute for minute how things happened on those days. Where we were, what we said, how we felt; they were days of joy and memories I cherish. There are other dates in my life that have also had the same effect, I can give you a play by play of how things happened, not because of the joy that they brought but simply for the mark that they left that has forever changed my life. June 11th, 2013 … the day my husband was diagnosed with cancer.

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Gabriel and Victor

It was stage IV lung cancer. We got the news at 9:00am and by around noon we were in with an oncologist. We asked typical questions as we tried to wrap our brains around what was happening. It seemed unreal. We had just bought a new house three months before and our son was only seven months old. My husband, Victor, who was 40 years old at the time, was a scuba diver, he rode motorcycles and was active. Besides the cough he seemed healthy.

It was the summer that the new Superman movie was coming out… Man of Steel. Victor had been looking forward to it, and it quickly became our slogan for his fight, “Super Vic, the Man of Steel.” This was a man who swam in oceans with sharks and drove race cars. He was no ordinary man and it would be no ordinary fight.

Victor was diagnosed on a Tuesday and that Sunday was going to be his first Father’s Day. We had planned to have both of our families at our house to celebrate.  Everyone suggested that we cancel or have someone else host, that there was just too much going on for us to have so many people for a “celebration”. It was at that time that we made the decision to live our lives. To cherish every moment we have with our family and friends and not allow cancer to push us into a corner of isolation.

Team SuperVic at Lung Love Run/Walk Houston 2014

Team SuperVic at Lung Love Run/Walk Houston 2014

We continued this mind set throughout his journey and I encourage others to do the same. Slow down a bit, have lunch with your spouse, stay up late with your kids, call your best friend and smile at a stranger. Don’t wait for something to rock your reality to remind you how precious our lives are.

On May 27th, 2016 a new date was forever marked on my mental calendar. The day my husband’s battle ended; just two weeks shy of his three year diagnosis and three weeks before Father’s Day. And while this Father’s Day he will not be here with us physically, his spirit will be strong. Our family and friends will gather at our house to celebrate fatherhood. For all of the men who have played a role in our lives and for the ones that will be like a father to our son. Nothing can break the bond and love we have for our family and nothing shows more love than continuing to honor his spirit by living our lives to the fullest.

Lung Cancer Highlights from ASCO

This past weekend Chicago hosted the annual “Super Bowl” of cancer meetings, the ASCO (American Society of Clinical Oncology) Annual Meeting. Over 35,000 attendees learned about cutting-edge clinical cancer research for many different types of cancers. Here are the key lung cancer highlights you need to know.

Small Cell Lung Cancer

Some of the most exciting news came from possible new treatment options on the horizon for small cell lung cancer (SCLC)! No major treatment advances have been seen in SCLC for the past 30 years, but we are hopeful that this will soon change.

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Rova-T study results showing that the drug is most effective for patients whose tumors have DLL3.

Rova – T: One of the highlighted presentations was the results of Phase I clinical trial on a new drug named rovalpituzumab tesirine (aka “Rova-T”).  This drug is an antibody-drug-conjugate which means that a targeted antibody takes a “warhead” or toxic compound right to the tumor cells.

The antibody in this case targets the DLL3 protein and the data clearly showed that the drug is most effective for patients whose tumors have DLL3 (see photo).  This is about 70% of people with SCLC.  Based on the promising data from this study, a nationwide Phase II clinical trial called TRINITY is now accepting patients whose cancer has grown after two rounds of prior therapy (click here for more information). All patients will have a test to confirm their cancer has DLL3 protein.  If it gets approved, this could be the first targeted therapy for small cell lung cancer.

Immunotherapy: We have been asked frequently on our Opdivo blog if immunotherapies are being used in SCLC.  There are a number of ongoing clinical trials and now there is some early data. A trial was presented that compared Opdivo (nivolumab) with two combinations of Opdivo and Yervoy (ipilimumab) together at different doses.  There is a reason to think a combination could work as Opdivo and Yervoy are currently approved together in metastatic melanoma.

Opdivo alone resulted in a 10% response and the combinations resulted in a 20% response, although there was more toxicity (side effects) when using both treatments at the same time. Similar to non-small cell lung cancer (NSCLC), the patients who responded well showed long-term responses. One of the dose combinations is being moved into larger, randomized trials. So consider this early days for immunotherapy in SCLC, but the speaker referred to it as “quite hopeful” for the future.

 

Non-Small Cell Lung Cancer

A lot of the work presented in NSCLC focused on new Targeted Therapies.

Over 35,000 attended the annual ASCO conference.

Over 35,000 attended the annual ASCO conference.

ALK: One of the most notable studies we saw compared the ALK inhibitor, Alecensa (alectinib) to Xalkori (crizitonib) for first-line treatment of cancers with an ALK mutation.  This trial was done in Japan and it has worldwide data that has not yet been presented.  However, in this trial of about 200, patients on Alecensa both survived longer and had fewer side effects than those on Xalkori.  So this drug may become the new standard of care for ALK+ patients.

It is important to note that Alecensa and a new drug called brigatinib can enter the brain to fight brain metastases.  Brigatinib is not as far along in development, but data presented in the same session showed it may also be an effective therapy for cancers with ALK mutations.

EGFR: Companies are developing new generations of therapies that inhibit EGFR better and/or can work after cancer comes back on EGFR therapy.  Early data was shown for two drugs that demonstrated some activity and success in different types of hard-to-treat metastases (leptomeningeal and brain).

Other mutations – BRAF and MET: There are also new drugs and drug combinations being studied for other mutations in lung cancer.  For patients whose cancer has a mutation in the BRAF gene (at a specific site called V600E that happens in 1-2% of NSCLC and is very common in melanoma), a combination of two drugs called Taflinar (dabrafinib) and Mekinist (trametinib) was studied. This combination is already used in metastatic melanoma. This is an early time point and a small study, but there was a 63% overall response rate showing that this is a promising combination in NSCLC too, although there was a high rate of side effects.

For patients with MET mutations (in a spot called exon 14, found in 3-4% of nonsquamous NSCLC and also in 20-30% of sarcomatoid carcinomas), early data (only 18 patients) showed that Xalkori (crizotinib; a known ALK inhibitor but it can also inhibit MET and ROS) may be a good option for these patients. For all of these drugs, studies are continuing to understand how to best treat patients with different types of genetic changes.

Interestingly, there were a few studies showing that molecular testing with liquid biopsies had a similar outcome to using tissue biopsy. This was shown both specifically for understanding resistance to EGFR-targeted therapies as well as more broadly for finding cancer mutations across tumor types.

Immunotherapy:  In general, due to the long-term benefits of Opdivo (nivolumab) and Keytruda (pembrolizumab) seen in a small percentage of NSCLC (15-20%), researchers are trying to figure out if combining these with other drugs can improve the number of people who respond.  These drugs are being combined with everything – other immunotherapies, targeted therapies, radiation, and chemo.  There were many studies but it is still early days for these combinations and it remains to be seen how to best combine these drugs to improve patient care.

From a patient perspective, there was also an interesting talk on how patient reports of the side effects they were experiencing on a mobile app allowed clinicians to identify recurrences sooner and at lower cost. This actually led to improved survival.  This study was done in France but the presenter said the software will be more widely available in 2017. Importantly for our community, this shows how significant your voice is in your treatment journey. Speaking up honestly about side-effects, how you are feeling and your concerns can make a major difference in your care.

If you have questions, please leave a comment below. You can also call our HelpLine at 1-800-298-2436 or email support@lungcanceralliance.org to discuss anything related to lung cancer. We are here to help!

Finding Hope Everyday

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Erik and Aloe at their engagement.

By Erik Hale

When you are 30 years old the last thing you imagine hearing is that you have lung cancer but, for me, that’s exactly what happened.

I was a preschool teacher at the time I was diagnosed. I remember getting the call from my doctor during lunch hour. I heard her say, “The tests came back positive for lung cancer,” and my brain basically shut off; I felt numb. At that moment, I wasn’t upset or angry, just shell-shocked. My reply was “Alright, so what should I do now?”

During Erik's treatment.

During Erik’s treatment.

Within a week I began treatment, which included a month of radiation, a couple of months of chemotherapy and finally a lobectomy to remove the lower half of my left lung. I started to learn what this disease meant for me; that my cancer was most likely terminal and I had approximately a 4% chance to live another five years. At 30 years old, what do you say when given that information? I wasn’t married, didn’t have kids and had never owned a home. Are these all milestones I would have to give up since I was diagnosed with a disease that came out of nowhere? I wanted answers and I wanted solutions, but I didn’t get much of either.

It’s a very odd and debilitating experience to have no control over your own destiny. All I could do was trust in my doctors, trust in the treatments, and, above all else, hope for the best. Hope was really what I needed. The statistics I was reading online, and hearing from my doctors, weighed heavily on my mind. When you see the likelihood of your own demise staring you in the face it can be maddening at times. My Uncle Marty, who is a physician, gave me wise advice that helped shift my perspective, “Don’t worry about the statistics because your chances are either 0 or 100 and that’s it.” It was exactly what I needed to hear at the time. What could I really do except grit my teeth and persevere? Everything else was in fate’s hands.

At their wedding!

At their wedding!

Hope is a strange thing. It comes in many forms. For me it came in the form of a wonderful surgeon who made sure I knew that, while my situation was dire, he was going to do everything in his power to make sure I survived. It came in the form of my co-workers, parents of my students, family and friends who raised money to help me pay medical bills and dropped meals off at my house every day of treatment. It came in the form of the Lung Cancer Alliance, advocating, and finding other survivors who understood how hard the struggle is. Most of all, it came in the form of Aloé, my girlfriend at the time who, when I came home to tell her the news of my diagnosis simply replied, “We’re getting married.” Rather than run, rather than breakdown, rather than give up, she was my rock, my support, my advocate, my dietician (to my dismay sometimes), and I truly don’t know if I would have been able to make it through without her.

As I write this, I’m now married, turning 34 next month, and my scans have been coming back clear with no detection of disease. My diagnosis and recovery changed me in many ways, specifically my perspective on life.

Let the small things roll off your back. Remind yourself that each day and every breath is truly a blessing. Surround yourself with your people, your community. Live passionately and fiercely go after your joie de vivre. And if you yourself have recently been diagnosed, or if you are experiencing any of life’s great challenges, seek hope in whatever form you can find it. It can show itself in many ways but you must leave your heart open to it and help it to find it’s way to you.

A Note For Those Newly Diagnosed

By Dann Wonser

Sunday is National Cancer Survivors Day and I am proud to be a 10 year lung cancer survivor! The past 10 year have not been easy, but I have learned a lot. If you have been diagnosed recently, here are a few things that you might want to hear from someone who has been in your shoes.

  • Have hope. Cancer treatment is exploding right now. It’s just incredible how fast things are changing – for the better.
  • Finding out is the hardest part. The first days, or weeks, are overwhelming for everyone. You will get past this – we all do. Just remember that what you are going through right now is harder than everything else you will go through. Everything else combined. The reason? You don’t have any tools to deal with it yet. That will change.
Dann and his wife Genevieve.

Dann and his wife Genevieve.

  • Let people in. My life is much richer and more full of love now than it ever was. That only came from sharing my trials and vulnerabilities. I have no doubt that I am alive today because of the love of, and for, family and friends. People surprised me with their outpouring of caring and love.
  • Plan how you are going to share your diagnosis with others. I found that by emailing people I cared about before talking with them about it, it saved me from endlessly re-living those first moments after being diagnosed, after the cancer had grown, or spread, or didn’t shrink when I had high hopes. This gave friends and family time to compose themselves before they talked with me, and because of that, the conversations went much better. This way I could also set the tone that I hoped that they would reflect back to me. It works.
  • Throw the statistics out the window. If you’ve been diagnosed for longer than 12 hours, you have probably already done an internet search and tried to calculate your survival odds and/or your new life expectancy. Finding statistics that match your specific situation is nearly impossible. For example, the average age of diagnosis for lung cancer is 71. I was 49. Do you think treatment outcomes will be the same? General health, environmental factors, location/size/number of tumors etc. – there are too many variables to make the stats make any sense for an individual. Beyond that, your attitude and actions make a difference.  More importantly, whatever statistics you find are probably hopelessly out of date. New treatments are coming online too fast for the statistics to keep up.
  • A diagnosis is not a prognosis. I was at the Lung Cancer Alliance National Summit a few weeks ago with 65 lung cancer survivors and loved ones. Most of us attending have, or had, Stage IV lung cancer, and a dozen have been alive for at least five years. If that’s not enough, I am your living example. I was first diagnosed ten years ago. One woman I know has had five different cancers, and is still alive 23 years later. The same diagnosis yields different results for different people.
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At the National Lung Cancer Summit, Dann visited Senator Ron Wyden’s office, of his home state of Oregon, to discuss the importance of lung cancer.

  • Do your homework. Your survival chances are directly related to the quality of the treatment providers you work with. Is your oncologist a specialist in your specific type of cancer? As a general rule, the more people that your doctor and your treatment center have treated that have the same type of cancer as yours, the higher their success rate. Experience makes a difference. Who are the recognized experts in your type of cancer that are within a radius that you are willing to travel?
  • Get molecular testing. The most promising breakthroughs in cancer treatment are at the molecular level. This includes both targeted genetic treatments and immunotherapy. If your oncologist doesn’t think you need it, consider the possibility that your oncologist is out of step with the latest research. You may want a second opinion.
  • Re-think clinical trials. “Clinical trials” used to be considered the last gasp desperation approach to treatment. The reality is that, for lung cancer and many other types of cancer, this is where you will find the most promising, cutting-edge medicine, with the best results, and with the least side effects.
  • Exercise, sleep, and diet all make a difference. They impact your mood and your ability to cope. More importantly, you will recover from medication, radiation, and surgery better and faster if you are in the best shape you can be. Take care of yourself. Exercise, sleep, and diet. In that order. One man’s opinion.
  • Attitude matters. Treasure the moment. Live in gratitude for what you have right now. Choose hope. These things not only improve your quality of life, they also improve your chances of living a longer life.
  • Love yourself. Treat yourself like you matter. Because you do. This may be your last chance to act like it.

If you have questions about lung cancer or just need someone to talk to, we can help! Call us at 1-800-298-2436 or email support@lungcanceralliance.org.

Another Reason to Give Blood: Liquid Biopsies

purple top tubeBy Jennifer King, PhD, Director of Science and Research for Lung Cancer Alliance

The Food and Drug Administration (FDA) just approved the first blood-based test to detect lung cancer mutations (gene changes).  This is the first approval in what has been an exploding field of research that many are calling “liquid biopsies”.  The reason for studying liquid biopsies is pretty obvious to most lung cancer patients.  Getting a normal biopsy (where tissue is taken from the tumor to see if there is cancer) can be an invasive procedure.  Many people don’t want more than one biopsy but doctors and scientists need more information to understand how to best treat the cancer at different times during therapy.

In addition, sometimes not enough tissue is able to be collected to do all the appropriate tests.  If the tests could be done by simply taking blood, urine, sputum or even breath samples, it would make testing much easier for patients.

This technology will not replace a tissue biopsy to diagnose a cancer and determine what type (non-small cell or small cell) or stage your cancer is.  However, it may help with treatment decisions, particularly when deciding whether to take Targeted Therapies for your lung cancer.  For example, the newly approved test detects certain changes in a gene called EGFR (Epidermal Growth Factor Receptor) and can determine whether the patient is a good candidate for the drug Tarceva (erlotinib).

There are many different companies developing liquid biopsy tests in many different ways. The most common type of test uses blood from a patient and looks at pieces of DNA that have been released into the blood by the cancer cells.  (This is similar to blood-based prenatal testing where they can look at both the baby’s DNA and the mother’s DNA in the mother’s blood.)

The technology tends to work best in advanced disease (where there is more cancer) and metastatic disease (when it is already spreading through the body) because there is more cancer DNA in the blood.   Because of this, right now liquid biopsies are mostly being used for treating and “monitoring” advanced disease and re-testing after cancers recur.  For example, tests are also being developed for patients who have already been taking EGFR targeted therapies but then have a recurrence. In this case, the liquid biopsy would detect new gene changes that may make the patient a good candidate for a different EGFR targeted therapy.

It is important to note that laboratory tests such as these are not required to be FDA approved to be used in a clinic or physician’s office.  However, FDA approval indicates that the test has been thoroughly reviewed to be safe and provide useful treatment information.

In the future, as the technology improves and more clinical trials are done to prove that the tests work, we expect to see more liquid biopsies being used for drug selection at the time of diagnosis. For example, a doctor could give a blood test that would test for mutations in EGFR, ALK and other genes when not enough biopsy tissue is available.

With Lung Cancer Alliance’s focus on early detection of lung cancer, we are also encouraging and participating in research to develop and test these technologies as a way to detect cancer earlier, when it is more treatable.

For now, this EGFR blood-based test has been FDA approved and can be used to recommend Tarceva as a first-line therapy.  In addition, many research institutions are offering additional liquid biopsy tests to patients with late-stage disease to help guide their treatment. Here are some important things to discuss with your treatment team:

  • Is one of these tests a good option for me?
  • What test is being used and why?
  • What gene changes will the test detect?
  • What do the test results mean for my treatment?

 

(Disclosure: Jennifer is on a clinical trial advisory panel for a company in this space and receives travel reimbursement to attend meetings.  She has no role, scientific or financial, in the test referenced above.)

New Lung Cancer Legislation!

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I am so proud and excited to share with you incredible news for our community. Last week, during our 8th National Summit, we were able to support the introduction of the Women and Lung Cancer Research and Preventive Services Act of 2016 in both the Senate and House!

Help get more support for this legislation by asking your Members of Congress to sign on today!

We know that lung cancer impacts women differently than men from age at diagnosis to smoking history to survival rates. With your help, we have been able to educate Members of Congress to the need for a new, coordinated research strategy to address this difference, with a focus on the increasing numbers of never smoking women being diagnosed.

This new legislation calls for the Secretaries of Health and Human Services, Department of Defense and the Veterans Administration to develop a comprehensive and innovative strategy and report back to Congress within six months.

Consistent with all other legislation related to lung cancer that Lung Cancer Alliance has secured, this bill will also be bicameral and bipartisan. That is, the bill will be introduced in both the House and the Senate with the support of members of both parties.

Find a list of co-sponsors here.

A big thank you to all of you for taking action on this important issue. Please send your emails to Congress today!

Best,

Laurie Fenton Ambrose
President & CEO, Lung Cancer Alliance

What a Week at #LCSummit16!

What an incredible week spent with some amazing lung cancer survivors and advocates in Washington, DC at the 8th Annual Lung Cancer Summit. Here are the top 7 highlights from the event.

  1. To kick off the event on Sunday night, we were fortunate enough to have a special musical performance from lung cancer survivor, Ginger Tam (vocals) and her cousin, Schulyer Slack (cello). Ginger has performed at past Shine a Light events and uses her music to raise awareness for the cause.

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    Ginger and Schulyer kick-off the Summit with a musical performance.

  1. On Monday, we heard from our keynote survivor speaker, Dawn Horner. Dawn just finished running a half marathon, even after her diagnosis. She has taken her lung cancer experiences and is turning them into something positive by giving back through Lung Love Run/Walk Portland.
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Dawn Horner sharing her lung cancer story.

  1. For the first time, we awarded the Michael G. Oxley Advocacy Scholarship Fund and Leadership Award to our very own Sheila Ross! The award embodies all that the late Honorable Michael G. Oxley, former Chairman of the Board of Lung Cancer Alliance, represented in his long and accomplished public service career – leadership, fairness, integrity, purpose, compassion, and service to others. There is no one more fit for the award than Sheila, a two time lung cancer survivor and the ultimate lung cancer advocate, having served with Lung Cancer Alliance as Special Counsel for 15 years.
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The late Honorable Michael G. Oxley’s wife and son present the Advocacy Scholarship Fund and Leadership Award to Sheila Ross.

  1. On Tuesday, 65 survivors and loved ones from 26 states met with over 100 congressional representatives to discuss the importance of lung cancer. It was a BIG day to say the least!
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While trying to stay dry, advocates snap a quick photo before storming the Hill.

  1. Dinner following our Hill Day was full of laughs and tears, with survivors and loved ones sharing highlights from their day. Awards were also presented to Ken Wheatley, for his leadership over the past five years as California Chapter Co-Director, and Shelly Engfer-Triebenbach for her ongoing efforts and dedication to the cause.
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Shelly and Ken receive the 2016 Leadership and Volunteer Awards.

  1. We finished the Summit with a Congressional Briefing on Capitol Hill discussing the devastating facts surrounding women and lung cancer. We heard from some very impressive leaders in the medical community making great strides for lung cancer and women.
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Congressman Rick Nolan, Co-Chair of the Lung Cancer Caucus with speakers at the Women & Lung Cancer Congressional Briefing.

  1. The best part about the Summit was that everyone got involved, even those who were not able to attend in person. Through Facebook and Twitter conversations, the event expanding beyond Washington DC. Keep up the buzz! It is a great way to share your story, raise awareness and educate.

Don’t forget, there are lots of ways to stay connected and involved in the lung cancer movement all year long. Click here to learn how!

A Lasting Legacy

By Nancy Labinger

Diane posing for the camera.

Diane posing for the camera.

When I ran into Diane a few years ago, we talked about the old days, everything from friends to fashion to politics. Our sidewalk rendezvous became dinner.

Once we started talking we never stopped.

We became the best of friends.  I learned that although for Diane the fact that she never married or had children was a disappointment, her life was very full of friends.  Loads and loads of dedicated, loving dear friends.  Wherever she went there were strong connections. The saying “friends are the family we create for ourselves” says it all.   Friends became her family.

She adored Roxie her Yorkie, all things fashion, movies, pilates, art and travel. She loved historical fiction and was particularly interested in the Holocaust. She was a devout Rolling Stones fan and never missed a concert in town.  She had a smile that lit up the room. With her twinkling brown eyes, she was undeniably beautiful.   She was forever posing for the camera, for the glam shots.  And as you can see, the camera loved her.

In the last couple of years, I accompanied Diane to her doctors’ appointments.  She was for the most part, upbeat and optimistic.   She talked often about silver linings. Silver linings and cancer.  Imagine that.  Her silver lining was that there was a targeted chemotherapy for her specific type of cancer.

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Diane next to her survivor banner at an awareness event.

She had a joie de vie and was full of life. In the ten years since her diagnosis, there were a lot of ups and downs. But this new drug gave her a quality of life that allowed her in her last 14 months to travel twice to Europe and to Palm Beach.

Throughout her time as a lung cancer survivor, Diane felt lucky. She wanted to help others diagnosed and give back. Turn her incredible luck and love of life into something positive.

She decided to leave her legacy in many ways, one of which was an estate gift to Lung Cancer Alliance. She believed in their mission and connected with the staff, meeting with the President in her beloved Chanel boutique on Michigan Avenue one May day.

Diane lost her battle with lung cancer a few years ago. I am not only incredibly lucky to have known her, but honored to call her my friend; to be considered a part of her family. Diane’s optimism, positivity and beauty will live on through stories, laughs and memories.

We are grateful to Diane for including Lung Cancer Alliance in her estate. Through her legacy, we can continue to help those living with and at risk for lung cancer. Learn more about how you can include Lung Cancer Alliance in your estate planning.

Family Comes First

Shelly and her family

Shelly and her family

By Shelly Engfer-Triebenbach

This Mother’s Day is a very special day for me. It reminds me of how fortunate I am to not only be a mother to my two beautiful children but also to be able to offer them the best version of myself.

I was diagnosed with stage IV adenocarcinoma on June 11, 2013. At that time, my daughter Kadyn was 10 years old and my son Chase was seven. Because I had six blood clots on my lungs, I was kept in the hospital for a full week while they ran a barrage of tests leading up to my diagnosis.  My kids could tell something wasn’t right. I was and remain very open and honest with them about my disease, answering any questions they have.

After finding out I have the ALK mutation, I started on Crizotinib, nine months later after progression I enrolled in a clinical trial for Brigatinib.  I have been stable on Brigatinib for 16 months.

My lung cancer affected Kadyn and Chase in different ways and at different times in the process. Chase was really bothered when my hair fell out about two weeks after starting chemotherapy. ‘When will it grow back?’ and ‘Are you going to wear a wig?’ were very common questions from him. He didn’t and still doesn’t comprehend the seriousness of my disease.

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Shelly, Kadyn and Chase

My daughter didn’t fully understand the diagnosis at first, but she knew that it was serious because of all the changes.  One major change was my job.   I am a vocal music teacher by trade. When I started chemotherapy treatment I decided to not teach in fear of catching something from the students since my immune system was already compromised.

Kadyn dealt with my diagnosis by taking action and learning about lung cancer. Now in 7th grade, she expanded her knowledge of lung cancer in a presentation she did for FCCLA (Family, Career, Community Leaders of America) titled ‘Got Lungs?’  She focused on the unbelievable facts about this awful disease and the disparity of funding.  Her main focus was ‘all you need are lungs to get lung cancer.’  She received an almost perfect score on both a regional and state level! I am so proud of her for having the courage to share her story publicly.

This past fall I went back teaching part time.  Not only did I miss the students, but I also missed the professional community and collegial friendships.  I feel so blessed to be feeling well enough to be back in the classroom part-time.

Lung cancer has definitely changed my life, some for the worse (obviously) and some for the better.  I have different priorities in my life now.  I no longer take time and events for granted.

Before diagnosis I frequently would be double booked with my professional obligations and my kids’ activities.  No more!  My family comes first.  Reflecting on everything that has happened, it is sad that it took getting this horrific disease for me to get my priorities straight.

As a mother you are always thinking of your children first – their well-being, happiness and feelings. I was determined to stay strong and never give up for them. Witnessing their courage throughout the process gave me a strength I didn’t realize I processed.

For this Mother’s Day, my advice to anyone (especially the moms) surviving lung cancer is always be your own advocate, put family first and if you cannot find strength in yourself, do it for those who love you. I have my children to thank for reminding me of these important things and for keeping me present in this moment.