Dream Bigger than Your Fear

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Peter on his 2009 climb of Aconcagua.

By Peter Czanyo

If you asked me if I would be running a marathon at the age of 60 (let alone any age) I would laugh, thinking you might have been directing the question to someone else.

As I write this, I am in the “tapering” phase (or slowly reducing mileage) of training, a word, up until this point, completely unfamiliar to me in the context of sports. I am traveling from my hometown of Buenos Aires, Argentina to Chicago, Illinois for the Chicago Marathon this Sunday, October 9th.  What motivated me to run it, you ask?

In 2003, at the age of 47 I found myself in a position I could have never anticipated. I was at the doctors for a routine check-up and since I had a history of smoking they decided to do a chest x-ray. I went into the doctor that morning feeling so full of life – my family was happy and healthy, including my two daughters Sophia, age 8, and Carolina, age 14 – and left with lung cancer.

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Peter and his daughter on Lanin Volcano on the border of Argentina and Chile.

I have always loved being active and spending time outdoors in nature. After my diagnosis I started climbing mountains. That was my dream! The dream has to be bigger than the fear – in my case, the fear of cancer. I had the incredible experience of climbing Aconcagua, the highest mountain outside of Asia reaching over 6,000 meters, and that was the turning point where I knew I could change my life.

I ran daily to train for the climb. My goal of running a marathon was born then! I wanted to do something visible to help those battling lung cancer, those who may not have a voice; something that would get people talking about the disease. When I run this weekend I am wearing a shirt that says “Lung Cancer Patient: Running for My Life.” I am running for my life and the lives of all lung cancer patients.

One thing that I have realized throughout this process if there is so much we, as humans, are capable of, but we hold ourselves back because of fear. Fear is our greatest enemy; fear of the disease and fear that we are not strong enough to beat it. We are all susceptible to illness – no one is an exception – but when we are presented with this obstacle in life it is a reminder to listen to our bodies, treat them with care, make appropriate changes and follow your dreams.

Just like running a marathon, it may seem impossible, but with hard work and determination any one can do it. I am proof that if you can overcome fear, you can do anything.

 

A Patient’s Perspective on Liquid Biopsies

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Kim and her husband.

By Kim Jones

I would much prefer to have blood drawn, than a collapsed lung and eight days in the hospital.

I was 47 years old in April 2014 when I requested a chest x-ray due to my family history of lung cancer.  That x-ray led to a thoracic specialist and ultimately a CT guided needle biopsy of my lung tissue to determine if I did, in fact, have lung cancer. After about the 3rd pull of the needle from my lung, I felt a little funny and then… the lights went out.  Yep, I passed out from lack of oxygen resulting from one of my lungs collapsing.

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Kim doing what she loves most.

From the initial biopsy, my treatment team was able to determine I had stage IV non-small cell adenocarcinoma… but that’s it.  The tissue samples were sent away by my oncologist for further genetic testing to determine the best next steps for treatment.  Meanwhile, I spent the next eight days in the hospital trying to build up my lung strength which was made a lot more difficult by the lung cancer.

The test results came back to show I had the EGFR mutation which meant no chemotherapy!  Hallelujah!  The EGFR mutation enabled me to take a targeted therapy drug, Tarceva to try to combat these cells.  Everything my husband was reading said people had great success with Tarceva and were continuing to take it four, six, seven years with no new growth.  This was really good news!

After a successful 18 months on Tarceva my CT scan results revealed what I dreaded … the cancer growing in both lungs again.  So what now?  Another tissue biopsy?  Another stay in the hospital?  Another recovery period?

What I wouldn’t do to just start taking another drug without having a collapsed lung again. I was terrified at the thought of another needle biopsy and potential collapsed lung.  Well, it turns out there was a company that developed a liquid biopsy, from a simple blood test, to determine if a specific mutation my oncologist was hoping I had was present.  If I had this T790M mutation there were several trials available and another targeted therapy…and no tissue biopsy required!

The liquid biopsy was so easy, just a quick draw of blood from my arm. It was sent off to be evaluated and came back positive for T790M!  Hallelujah again!! I felt even luckier when my doctor told me that a drug that fought my particular mutation, Tagrisso, was just approved by the FDA.

What’s even more wonderful is that I had the opportunity to help other lung cancer patients by taking a trial drug specific for my mutation. After losing three close family members to lung cancer, I felt I needed to do something more for lung cancer patients, so I moved forward with a trial drug, which I’m still on today.

What will happen when this trial drug stops working?  I don’t know.  But, I’m sure hoping the FDA will approve the efficacy of liquid biopsies and save patients and insurance companies millions of dollars in hospital stays from collapsed lungs. If you are battling lung cancer, be sure to ask your treatment team about liquid biopsies and if it is right for you.

 

Last week, the Food and Drug Administration (FDA) approved the blood test for T790M. To learn about this and other liquid biopsies click here. For questions about liquid biopsies and anything lung cancer related, please call 1-800-298-2436 or email support@lungcanceralliance.org

So Much to Live For

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Deva and her grandkids.

By Deva Lambert

Being a grandmother has been the best thing that has happened to my life. In my wildest imagination I never knew it could be this rewarding. Especially since it was almost taken away from me…

In 2007, I was diagnosed with early stage lung cancer and had my right lower lobe removed. At that time it was not recommended I undergo chemo or radiation.

Then, four years later, on May 24, 2011 a CT scan determined the cancer had returned. I really thought they were going to go in and remove the rest of the lung but once in surgery it was discovered that the cancer had invaded the entire chest wall. Surgically, there was just nothing they could do.

The cancer was now stage IV.  So after taking six weeks to recover from surgery I started radiation every day for a week. Then it was off to chemo. I was not given very good odds–just three to 18 months!

But wait just a minute, I’m 53 years old and I have a wonderful husband, children, family, friends AND grandchildren. I had lived my life waiting for grandchildren and I wasn’t going out now. There was just too much I was going to miss. So I battled on.

And, after more than five years and well over 100 rounds of chemotherapy, radiation, a brain surgery for metastases I am still battling and am currently on Opdivo, a new immunotherapy.

It wasn’t always easy. There was a time years ago when I thought I would never get through chemo and all the treatments but I can tell you it was worth every minute. I am now five years into stage IV and going through treatment has given me the opportunity to experience so much joy. I have been able to spend a very significant amount of time with my family, especially those grandbabies.

We have been to Hawaii, the river, Disneyland, the beach, Catalina and most recently to the Island of Mustique. I have seen them participate in sports events, graduations, proms, winter formals, medallion balls; watched them go off to college and the list goes on and on.

As a grandmother I get to pass on my values, share family history, laugh, teach and stand back with great pride as I watch each one flourish and come into their own.

As a mother all of this was my responsibility. Now, it is my reward. As scary as stage IV lung cancer can be I have to say it really brings the family together. We all know we are not here forever, but the diagnosis is like getting your “train ticket”.  The family knows my time is limited and it’s time to unite like never before.

In closing I have to say LCA is an organization that is going to help make my story, the story of many. Lung cancer is a tough disease. It takes the lives of SO MANY but as we all fight together, we will continue to make strides that enable individuals to get the early diagnosis that is necessary to enable longevity.

So, my message to any diagnosed grandparents out there or anyone who may be just sitting back scared. Stand up and fight, go laugh, go have fun, go live. Those grandbabies are truly your reward for all those years as mom!

 

Meet Our Newest Staffers

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Kevin (right) and Jamal (left) joined the LCA staff this summer.

When we have a new staff member come on board our Lung Cancer Alliance family (LCA), we like to find out what brought them here. Our two newest staff are Jamal Bankhead, MPH and Kevin Schaeffer.

Jamal, our Data and Evaluation Manager, handles data collection and monitoring for our Screening Centers of Excellence and treatment centers. Kevin, our Development and Operations Coordinator, assisting in donor relations and development and making sure things run smoothly around the office.

Read below to find out what Jamal and Kevin are all about.

Why work in the field of lung cancer?
Jamal: I chose lung cancer because it’s a huge public health area that many need to be educated about. Being that lung cancer is the number one cause of cancer death in both men and women in the United States and worldwide, there’s a lot of work that needs to be to change this. I chose Lung Cancer Alliance because I want to be a part of an organization that’s putting in the work to help fight lung cancer.
Kevin: I have always been interested in the health care field. I started out going to school for pharmacy and always enjoyed classes like anatomy, plus my girlfriend is now a Physician Assistant so medicine is a big part of our day-to-day life. I’ve also always had a passion for non-profit work, so being able to combine those joys and work for an organization that is on the front line of incredible advancements in lung cancer support and research is just what I was looking for.

What element of the cause are you most passionate about?
Jamal: Helping to increase understanding of lung cancer through research.
Kevin: Helping the lung cancer community reach the levels of funding and research it deserves.

Were there facts about lung cancer that surprised you?
Jamal: I was surprised to learn how few people were diagnosed with the disease at an early stage.
Kevin:  Like most who are uninformed about the disease, I was surprised to learn the breakdown of those affected, especially the recent upwards trend of younger patients with no connection to smoking.

What impact do you hope to have on the lung cancer community?
Jamal: I am excited to present the data that will help educate our community to make the best personalized decision in treatment and management of their disease.
Kevin: I can’t wait to see how LCA grows in the next few years and how many lives we will be able to change because of it!

 

 

Learn more about Kevin, Jamal and all the staff at LCA!

 

Cautiously Optimistic

Isabel Vincenty

Isabel (far right) with her daughter and husband.

By Isabel Vincenty

It’s been just over a year since the most devastating news of my life.

We were on the eve of a Hawaiian vacation when I felt a pain in my hip. I hoped that quick trip to the orthopedist for a cortisone shot would have me ready for my upcoming hikes and activities.

After a stint of back and forth X-rays, biopsies, and multiple doctor’s visits, we were finally informed of the diagnosis. It turned out that the pain in my hip was being caused by a tumor – one of three to be exact. Three alien infestations in my body that all pointed to Stage IV Metastatic Lung Cancer.

The devastation of hearing those words and trying to comprehend what they meant is indescribable. Overwhelmed by the news, I remember having an out of body experience as the oncologist explained the diagnosis and grim prognosis to me and my family.

It had to be a mistake. I’d never smoked a day in my life and up to that day (and continuing to today), have never had any symptoms that would have been indicative of something so damaging taking hold of my body. I, along with so many others, considered lung cancer to be a self inflicted illness, caused only by years of inhaling poison.

In my scramble for answers, I lived with a few weeks of mortifying internet dives expecting the worst, while I waited (very impatiently) for my doctor to continue to run tests. We finally received our first sign of optimistic news and a concrete direction for treatment. Through genetic testing, it was revealed that my cancer was caused by the EFGR gene mutation, which allowed for a much more targeted therapy specific to this mutation.

One year after being told I had a two year life expectancy, I find myself among the positive side of the Tarceva statistics. All of the satellite tumors in my bones have disappeared and the primary hub in my lung has continued to reduce in size as a result of Tarceva. My last trip to the oncologist revealed, through a PET scan, that he was ready to start radiation to eliminate what’s left of the initial lung tumor with hopes of NED (no evidence of disease) status after the treatment. I have started very intense radiation and am so hopeful for a successful outcome.

To this day, I remain cautiously optimistic. I chose not to think of myself as a cancer patient and have not let many in my life be privy to the news. I have found solace in the stories that I’ve read here, and hope that my own experience can bring education and encouragement to others seeking answers.

 

If you have questions or need support along your lung cancer journey, call us at 1-800-298-2436 or email support@lungcanceralliance.org.  

Riding for a Cure

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Barbara and a friend on a “bike run.”

By Barbara Tullio

In October 2012 I was in a car accident. While being treated for my injuries, I found out I had stage 3B adenocarcinoma lung cancer.

Despite my doctor telling me to head home and get my affairs in order, I’ve been in treatment for almost four years now. Two years ago, the cancer spread to my brain, but I keep fighting!

I actually called the girl that caused the accident and thanked her for saving my life.

I feel so blessed by the people I have met and the incredible healthcare team I have worked with.

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Barbara doing what she loves most.

One thing that brings me great joy is riding my motorcycle. I am part of a motorcycle club that is full of other folks that love to ride as much as I do. At one of our meetings we decided to organize a ride, or what we call “a bike run,” to raise money for lung cancer research.

I want to do everything I can to help push us closer to a cure for this disease. I feel fortunate to have found Lung Cancer Alliance, who is helping me to do just that.

On September 25th in Philadelphia, PA I will ride my motorcycle, with my support team by my side, in the hope that our efforts will help those battling this disease and that future generations will not have to face what I have.

If you are interested in hosting a fundraiser in your town, we can help! Just contact us at events@lungcanceralliance.org.

I Thought I Was Invincible

 

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Roberta and her dog, Gracie.

By Roberta Willet

I have been a registered nurse for 30 years.  In those 30 years, I was exposed to every disease under the sun and never got sick.  I really thought I was invincible.

Four years ago, my husband and I were days away from moving from New York to a new home in New Jersey. I decided to get my annual doctor’s visit out of the way before the chaos of the move kicked in. I had a slight pain near my waist whenever I plugged something in, nothing major, but decided to address it with my doctor during that visit.

My doctor, who was also my employer, suggested an x-ray just to play it safe. The x-ray led to a CT scan which, to my shock and surprise, showed five nodules spread through my upper right lung. While still processing this news, a biopsy was scheduled and performed, resulting in a longer hospital stay due to my lung collapsing!

Because of the move, that could not be rescheduled, my husband and I ended up staying with friends in New York while going through this very scary process. We were still pinching ourselves…”Did that really happen?” “How it this possible?”

Roberta and her husband.

Roberta and her husband.

After going through six weeks of tests, reading frightening statistics and preparing myself for a short six months left of life, my uncle, a retired physician, suggested I go to a hospital in Philadelphia. The process was amazing, quickly organizing consultations with every doctor, nurse, physical therapist, nutritionist, naturopathic specialist they had employed.  A plan of action was designed for me and in less than a week I started chemotherapy.

I had an entire team fighting this battle with me.  After 18 chemo treatments (three weeks on and one week off) another scan revealed one small spot still on my lung. All five tumors otherwise were gone!

Cancer does not have to be a death sentence but you must take responsibility for your health.  You must be your own advocate, be partners with your medical team.  Ask lots of questions and do anything and everything you can to help your body defend itself against this horrible invasion.  Eat correctly, sleep well, and be physically active.  One of the most important things you can do for yourself is to think positive….. be optimistic.

I just celebrated my four years survival anniversary!  I am living a full life, I feel great.

 

If you have questions or need support along your lung cancer journey, call us at 1-800-298-2436 or email support@lungcanceralliance.org.  

 

 

 

 

A Friend for Life

Leah and Kimberly at the Huskers' game.

Leah and Kimberly at the Huskers’ game.

Sunday, August 7th is Friendship Day, a day to say “thank you” to all those special people in your life you call a friend.  We sat down with two inspirational survivors who would have never met each other were it not for their lung cancer diagnosis.

Leah and Kimberly are both young moms in their 40’s, living in Nebraska. After their lung cancer diagnosis they both took action, becoming strong advocates for our cause. They met at an awareness event cheering on their favorite team, the University of Nebraska Cornhuskers. We got their take on the friendship and how it has changed their lives.

Why do you think you became such fast friends? 

L: We are both passionate about taking up the cause for lung cancer.  We are Husker fans.  We are both moms.  We both grew up in small towns.

K: Leah and I had an instant connection. It was perfect timing as I was really needing a lung cancer survivor connection that was my age and had similar life circumstances.

What does your friendship mean to you? 

L: Kimberly is the only other person in Nebraska that I am connected with who is passionate about the cause. That is invaluable! She has motivated me to step outside the local box and think bigger about how to take our cause higher, like going to D.C. in May for the Lung Cancer Summit.  I would never have done that without her encouraging me to go.

K: I am so thankful I met Leah. I look forward to continuing our friendship and working together to fight for a cure!

Leah and Kimberly ready to storm Capitol Hill at the 2016 Lung Cancer Summit.

Ready to storm Capitol Hill at the 2016 Lung Cancer Summit.

Is there a moment in your friendship that stands out to you?

L: When the two of us went “head to head” with one of our representatives in D.C., tag teaming and working together to drive home our point. It was amazing!!!

Have your friendships changed since your lung cancer diagnosis?

L: They only grow stronger!

K: I lost one of my closest friends, and to this day do not know why that happened. But I gained a few more valuable friendships I wouldn’t have had if it weren’t for lung cancer.

What advice would you give someone battling lung cancer? 

L: Keep a positive attitude!  Never stop seeking the best path for yourself; research, question and be informed about every decision.  Don’t be afraid to seek help.

K: Respect your family and friends and their feelings towards you. In the beginning, I put up a wall and didn’t allow all of my family and friends to be involved in my treatment. I kept them at arm’s length and tried to handle everything on my own.  I didn’t realize until it was almost too late that they needed me and I needed them. And BE YOUR OWN ADVOCATE!

 

 

The Power of One

By Kristin Bramell, Director of Philanthropy, Lung Cancer Alliance

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We spend a lot of time encouraging people to be a part of a community, and to band together to create a powerful voice. Sometimes the most powerful voice can be just a single person, though, that creates change organically. The Power of One.

Malala Yousafzai brought the world into her living room to understand the perils of attaining simple education in Pakistan. Caitlyn Jenner made transgender issues common dinner conversation. And one man changed social fundraising forever with the dare to dump a bucket of ice over your head. The ALS Ice Bucket Challenge was an instant and powerful tool that dominated social media and ultimately raised $115 million in a single month for ALS Association–well over their normal $23 million annual budget. This grand total is more than the $102 million funded by the Lung Cancer Research program in the Department of Defense since 2009!

Within a week, an entire nation was discussing “What is ALS? Who is at risk? What are the symptoms? And what can I do to help?” The concept was simple—avoid the dare and pay up, or take the dare just for fun…and still pay up. Your $10 donation became $50 when you asked four friends, who continued the chain to reach tens, then hundreds, then thousands—and researchers swooned with the advancing opportunity to create systemic change for a debilitating and deadly disease.

It is realistic that only one person needs to be inspired to spark a movement, but it requires that one person to begin the conversation.

So what does this defining moment look like for lung cancer? When will the “a-ha” moment come that creates global awareness and passion for lung cancer, which has been so stigmatized for so long? Perhaps it’s with your powerful voice. Perhaps the next big idea will be yours.

Lung Cancer Alliance is so grateful for each and every dollar that you commit to our cause. As the highest rated lung cancer charity (by Charity Navigator), and the top 1% of all charities nationwide, we promise to continue our life-saving mission for all people living with a lung cancer diagnosis or at risk. I hope you will pledge to help us meet these immense needs too. Every gift counts, and moves the needle closer to a cure.

Click here to give to Lung Cancer Alliance.

Successfully Living with Cancer

Dawn at the 2016 Lung Love Run/Walk Portland in June.

Dawn at the 2016 Lung Love Run/Walk Portland in June.

By Dawn Horner

I have always loved running. It is tough, but in a way that leaves you feeling lifted, happy and challenged all at once.  I have run in several races over the years but the most difficult one was the Sauvie Island Half Marathon in 2007, 13.1 miles, that’s 52 laps around the track! It was on the 4th of July, temperatures were in the upper 90s and the race organizers ran out of water half way through. Just as I hit a wall about two miles before the finish line, an elderly lady breezed past me, so I focused on her to try and keep up. Finishing that race was a huge relief.

Seven years later, in August 2014, I was presented with a very different physical, emotional and mental challenge, stage IV lung cancer. I was 51 years old, healthy and active. The worst part was that it took 17 months of repeated doctor visits, two misread chest x-rays and a second opinion before my cancer was found.

Once I made it through the initial shock and deep anger and frustration towards the healthcare professionals that took so long to find a diagnosis, we had to tell our kids. Believe it or not, telling them was one of the hardest elements of the whole process. Two of our children were in college and the other was starting a career on the other side of the state, I didn’t want them to stop living their lives. Once we broke the news, our family pulled together and held each other up.

I was told by a very wise young doctor that when I was in treatment, I could talk about cancer but when I went home I should leave my cancer behind. That same person also advised me to think of stage IV lung cancer as a chronic illness rather than a terminal illness. This guidance has really helped me keep this whole thing in perspective and allowed me to continue living my life.

Dawn shared her story at this year's Lung Cancer Summit in Washington, DC.

Dawn shared her story at this year’s Lung Cancer Summit in Washington, DC.

Early on in this journey I spent hours doing research on the different types of alternative medicine that were available. I changed my diet completely, leaving out red meat, dairy, coffee, wine and white starches. As time went by I learned to relax and find moderation. I’ve added coffee, red wine and a little bit of dairy back into my diet and I’m still doing great.  I was also able to maintain my exercise routine of walking, hiking and low mileage slow running.  Not only has this helped strengthen my physical health, but even more importantly, my mental health.

The best advice I could give someone recently diagnosed is to take life one day at a time and to not worry about the future. Live your life as full as you can each day, give thanks and tell those who are close to you that you love them.

To me, being a survivor means I am successfully living with cancer; it is not the end all anymore. I’ve met many people who have been living with stage IV lung cancer for a lot longer than five years. I have found strength through my family and friends, as well as meeting others who are battling this same disease.

When I first started treatment it was sort of like the Sauvie Island Half Marathon. It was not easy, I had to work at it every day, but I kept hope and found support outside myself. I’m planning to walk another half marathon in 2017, I guess I should start training soon!