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About this blog

These are the stories of LUNGevity Foundation's passionate volunteers who are dedicated to improving quality of life and survivorship.

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LaurenH

Nina Beaty

I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung.  I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “  For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects.

I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016.  Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer.

Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017.

When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen.

If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them.  Some mentees just want a one-time chat to know someone else has survived the same illness.  Others, who don’t have anyone they feel close to, might call me more frequently.

One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with.  She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too.

The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say,  ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.”  Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true.  I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible.

 

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Photo credit: Ben Hider for the CURE Magazine

LaurenH

Sam McBride

Around the first of December 2015 I noticed I was having some shortness of breath when I climbed the flight of stairs to my apartment. I didn't think much of it at the time. I just chalked it up to my age (62) and being out of shape. As time went on the shortness of breath became worse and I developed a persistent cough with some transient hoarseness. I decided it was time to see the doctor.

My primary care provider diagnosed me with asthma/bronchitis, which I had many times over the years in the past. He put me on an antibiotic and an inhaler which usually worked. As the days went by and I did not get any better, I went back to see him. He switched the antibiotic and prescribed a cough syrup. I still wasn’t getting relief, so I went back a couple more times. The doctor seemed to be getting frustrated with me, and I knew I needed to see a specialist.

I scheduled an appointment with a pulmonologist. A chest x-ray showed a large pleural effusion. I underwent a thoracentesis, which revealed malignant cells in the fluid. A CT also showed several masses in my right lung. I was sent to a thoracic surgeon who performed a pluerodisis and biopsy. The biopsy revealed stage 4 metastatic non-small cell lung cancer (NSCLC) that tested positive for the ALK mutation.

After learning about the advancements in the treatment of NSCLC, especially in the ALK mutation, I chose to have treatment. My oncologist recommended an oral targeted therapy drug Xalkori (crizotinib). He explained that the drug was not a "cure" but was very effective in shrinking or slowing tumor growth, which it did with very few side effects. 

Shortly after being diagnosed and before beginning treatment with Xalkori I started researching everything I could find about lung cancer just trying to get a better understanding of my disease and find support from others who were dealing with lung cancer, it was during this research that I came upon the  LUNGevity website. The name was the first thing that attracted me, I thought it was a neat play on the word longevity but as I began reading I soon realized there was a wealth of information and support there and that the organizaton was very actively involved with funding for research which really appealed to me because I feel it is through research that a cure will one day be found.                 

I liked what I learned and decided to become a Social Media Ambassador so that I could help spread the word about lung cancer and clear up some misconceptions about the disease. I attended a Hope summit put on by Lungevity in Washington DC where I was even more impressed with the organization and the wonderful people involved with it. 

The LUNGevity website, Inspire, and the Alkies Worldwide Facebook group have been valuable resources of information and support for me. I am also a member of a cancer support group at my church.

The biggest challenge to me is always living with this disease in the back of my mind. Every scan or blood test reminds me that there is a potential killer living in my body and I don't know what it is up to until I get my results. It is as much a mental disease as it is a physical one.

To me, a survivor is a person who has overcome something bad and lived to tell about it.

If I could give any advice or words of wisdom to a newly diagnosed patient, I would first tell them that lung cancer is no longer the automatic death sentence that it was in the past. I would tell them to demand gene mutation testing so they know what kinds of treatment options are available. I would also tell them that lung cancer treatment is a waiting game. It’s helpful to distract yourself with life and not to focus solely on this disease. Don't give lung cancer that much power over you!

I hope that my efforts as a volunteer will help raise awareness and funds for lung cancer research. I want to make people aware that it only takes lungs to get lung cancer.

 

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Sam and her husband Bob in Jackson Hole, Wyoming, shortly after her diagnosis.

LaurenH

Pauline Makowski

My husband, Allan, died from stage IV lung cancer in June 2009. I was feeling a need to get involved with an organization dealing specifically with lung cancer.  I researched LUNGevity, and thought it was a very worthwhile organization.

My first experience with LUNGevity was in November 2009. At the time, my daughter, Stephanie was a college student in NYC. She formed a team for LUNGevity’s Walk to Beat Lung Cancer, which later became Breathe Deep NYC.  My son and I joined Stephanie and her roommates at the walk. I was very impressed with the event and the volunteers.  We continued to walk and volunteer for the NYC event through 2013. Stephanie was on the committee for the walk during her college years.

We wanted to start a Breathe Deep NEPA event in our community. Northeastern Pennsylvania is an area with an above-average rate of lung cancer. So many lives are touched by this disease—those of the patient, the survivors, families, and friends. My major goal is to bring awareness to the community about lung cancer. The event also brings people impacted by the disease together to help raise awareness and critical funds.

The most rewarding thing about being a coordinator is the great feeling that I am helping lung cancer patients by raising funds to help others survive.  I was so devastated by not being able to help my husband.  Hope is my mantra.

I hope that our efforts will continue to fund research to find an early detection test, most important, and more therapy treatments.  Also the support LUNGevity offers to patients, families and caregivers.

 

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LaurenH

Kara Capasso

When my dad, Fred Gontarek, was diagnosed with lung cancer, I felt lost. I wasn’t sure where to turn. I searched the internet as most people do to see what support was out there and what was being done to raise funds for research. Sadly, there were not many local organizations or funds being raised for lung cancer. I vowed to try to change that. I found the Breathe Deep Philadelphia Event was coming up in the Fall of 2011 and knew we needed to be there for Dad and with Dad.

Team Fred started in April 2011 with the motto “No One Fights Alone” to show my dad how many supporters he had and to give him hope during his battle with lung cancer. Fred fought as hard as he could until he passed away on April 28, 2012. The motto was then changed to “Never Forget” since our memories of him and what he meant to us continues to live on. Team Fred first walked in 2011 with Fred by our side and today we still walk in his memory as he watches over us.

I first formed a team for Breathe Deep Philadelphia in 2011 and have continued to volunteer each year after that.  This year it is an honor for me to be the event coordinator for Breathe Deep Philadelphia. The Breathe Deep events program provides knowledge and support during a difficult time.  These events give friends and loved ones a chance to gather together to not only raise funds but raise awareness and offer their support.

The most rewarding part of being a Breathe Deep event coordinator is knowing that I have a part in raising the funds necessary for critical lung cancer research.  My dad was a man who would do anything for anyone and I know that if he were here today he would be right by my side helping in any way he could.  My focus is keeping his memory alive while hoping to positively change the lives of others.

I hope my fundraising efforts will support life-saving research that is necessary so that one day we can live in a world where no one dies from lung cancer.

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Kara (right) and Team Fred at Breathe Deep Philadelphia

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Kara and Fred dancing at her wedding

LaurenH

By: Deborah R. Burns

“Everybody can be great. Because anybody can serve. You only need a heart full of grace, A soul generated by love.” - Dr. Martin Luther King, Jr.

Charlotte Jamison is many things: a Christian, a mother, a teacher, a friend, and a volunteer.

Over the past two years, Charlotte has volunteered her time and talents to assist in the efforts of the LUNGevity Foundation’s Annual Breathe Deep DC 5K Walk.  Charlotte serves as the backbone and chief fundraiser for Team Open Technology Group: (OTG) United for A Cure.

Charlotte and my family have been friends longer than I can remember. She and my husband Leon had a special relationship. I still remember how they would often laugh together, share experiences, and enjoy working together on church projects. After my husband was diagnosed with lung cancer, she was the key person who supported me and walked me through that unforgettable journey. Since my husband’s death in 2011, she continues to be a huge inspiration in my healing.

A member of New Canaan Baptist Church in Washington, DC. (Gregory M. Sims, Pastor), Charlotte has engaged the entire congregation in being part of this important cancer-fighting effort. She sets up a beautifully decorated table each year to receive donations and to recruit walkers for the OTG Team. She and her helpers work tirelessly documenting information, promoting the cause, and speaking to individuals about the walk.

On the day of the walk she always arrives with a smile and eager to help.  She immediately begins handing out goodie bags, gathering our Team and rallying “Team Spirit”.  Many of the volunteers from other teams admire her enthusiasm and dedication for the cause.

She inspires through example.  I can never thank her enough for all that she brings to our Team and fighting this disease that claims thousands of lives each year. Did I mention that she’s 80 years young! God strengthens her to do His work. She often says “As long as the good Lord enables me to work, I’m going to work.”

Open Technology Group’s cup runneths over for having Charlotte Jamison serve as a volunteer for OTG: United For A Cure. We are truly blessed by having her.

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LaurenH

It came as quite a surprise when I was first diagnosed with Stage 3 lung cancer in 2007. It was an even bigger shock to learn that my lung cancer was caused by exposure to high levels of radon gas in my own home. I want to keep sharing my story with the hope that it might prevent others from getting lung cancer from radon gas. 

My husband and I did extensive renovations on our house to turn it into our dream home. About five years later, I developed a nagging cough. I went to the doctor, who sent me for a CT scan. The scan showed a mass in my right lung, so we scheduled an appointment with a pulmonologist to have a biopsy. The doctor who performed the biopsy called to tell me that I had lung cancer and that it was inoperable. He told me that I had four months to live. 

My husband had just returned from a trip to Africa and my mother was staying with us while she recovered from surgery. I turned on the T.V. and Jordin Sparks was singing, “This is My Now” and it just hit me that “you can sit here and feel sorry for yourself or you can fight it.” It’s crazy how the universe works.

Shortly after I was diagnosed, we had our home tested for radon gas, the second leading cause of lung cancer. The test showed levels that were 6-times the EPA recommended action level. I had my right lung removed and underwent 5 weeks of radiation and 4 months of chemotherapy. I started to gain my strength back and started looking for a lung cancer community. 

In the beginning, there was very little information about lung cancer. I couldn’t find anyone to talk to. Then my daughter found out about LUNGevity and a walk they were holding in Manhatten Beach, California, called Breathe Deep Los Angeles. She said we should go there on a girls’ trip. Who wouldn't want to go to the beach after dealing with lung cancer treatment? My first Breathe Deep experience was so inspirational. There were over 350 people walking whose lives had somehow been touched by lung cancer. I’d never been to anything like that and there was nothing like that where I lived near Salt Lake City. When we got home, my other daughter said, “Why don’t we start one here?” So we held our first Breathe Deep Salt Lake City in 2012. 

I remained cancer free for 6 years, then in 2014  they found a fist-sized tumor in the front of my brain and a smaller tumor in the back which was metastasized lung cancer. They were able to remove those tumors and I went back into remission until that December, when they found 6 more brain tumors. I underwent surgeries to remove those, and then in January 2015, I started on a new chemo pill that I take orally. This treatment has worked very well for me and now there are four more on the market that would work just as well or better if this one stopped working. This is why I am so passionate to raise funds for lung cancer research. I am living proof that it works. The new treatments are so effective and amazing, but researchers need funding to find a cure.  Lung Cancer research receives the least amount of federal funding of all types of cancer, yet it is the deadliest. I feel it is so important to raise funds to improve outcomes for lung cancer patients. 

I think the most rewarding thing about being a Breathe Deep event coordinator is to see people coming back year after year because they know it’s a good cause. It makes you realize how many people care about health and our lungs. The more people you talk to, the more you find that they have a connection to lung cancer, whether it’s a family member or friend. In addition to raising funds and awareness, we try to provide information at our event. We have speakers who talk about new discoveries in lung cancer treatment and radon. 

In fact, just because we’ve been raising awareness, a lot of the real estate agents are on board with getting homes they sell tested for radon gas. A local organization that does radon testing is even donating $20 of every radon test they do to LUNGevity. They’re promoting the walk to all of the real estate agencies that they work with. It’s amazing how generous people are. At first, I thought I can’t go around asking for free stuff. But I’ve found that people are willing to help! 

I really feel like the grassroots is the way to reach people. I’ve had more success talking to people one-on-one. We’ve done some women’s groups and I’ve spoken at classes on Radon. I also worked with a social worker to put together a lung cancer support group. The online groups are great, but sometimes, you just really need to talk so somebody in person. In addition to LUNGevity, I’ve also been doing a lot with the Utah Radon coalition. And I’m going to be speaking at the international radon convention in New Orleans in October. I want to show that there’s a face to lung cancer caused by radon gas. If it can happen to me, it can happen to anyone. Preventing lung cancer is so much easier and less costly than treating lung cancer.

 

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LaurenH

I was diagnosed with lung cancer in August of 2011 out of the blue, totally unexpected. I went for a regular checkup after experiencing some gastric reflux and abdominal pain. The doctor suggested an abdominal CT scan. He called me back into his office and told me that, although the scan was of my abdomen, a part of my lung had been included. A little shadow had shown up there that concerned him. He asked me to undergo a second CT scan, this time of my lungs. That scan revealed a prominent area of masslike consolidation in my left lower lobe. The next day I saw my pulmonologist, who scheduled me for a needle biopsy. At the time, he didn’t think that the scan findings really indicated a lung cancer. I was not concerned either, as I had never smoked and had little history of cancer in my family.

I was traveling home from a visit with some friends when I got the call from the hospital. The emotional voice on the other end was cracking. I didn’t even realize that it was my pulmonologist. He said, “We got the results from your biopsy. You have a very large tumor taking up most of the left lower lobe of your lung. We have to get this right away. We’ll get through this honey.” It was surreal. I thought it was a mistake.

I was diagnosed with non-small cell adenocarcinoma. They scheduled surgery right away to remove a lobe of my left lung. That was followed by chemotherapy. It was a very tough time. After I recovered from that surgery and the chemo, I just wanted to go back to my life. I’d been very happy with my life. I was a volunteer chaplain. I didn’t know any other survivors and I didn’t want to think about lung cancer anymore. They said I only had 15% chance of the cancer coming back so I wasn’t going to worry about it.

A year later, the cancer came back. Looking at the scan, I felt like I was in a nightmare. The second surgery to remove the rest of my left lung was easier, because I knew what to expect. But after that surgery and treatment, I knew I needed to get plugged in and started searching online for an organization that could help.

I liked that LUNGevity Foundation was constantly posting helpful information and seemed focused on survivors. Before I was diagnosed with cancer, I had enjoyed the experience of mentoring, so I applied to be a LifeLine support partner. Nikole from LUNGevity reached out and invited me to attend the HOPE Summit survivorship conference. One of my friends went with me and we had such a wonderful time. HOPE Summit changed my life.

Before that time, I had been pretty isolated as a survivor. When I walked in and saw that many survivors, I was amazed and overwhelmed. Hearing others share their experiences changed my whole attitude. The main thing I came away with after HOPE Summit is “be your own advocate.” My amazing friends that I met through LUNGevity connected me with my current doctors at UT Southwest.

Any time that you need support from LUNGevity, it is available. I am a LifeLine mentor to other survivors, but I also have LifeLine mentors who have helped me through two recurrences of cancer. They’ve really inspired me and kept me looking forward. Mentoring is a two-way relationship. If they’re feeling down, I can help them and if I’m feeling down, they can help me. It is so rewarding. I’m also a LUNGevity Social Media Ambassador.

I’m a big believer in the power of connection. If we isolate ourselves, we focus more on the negatives and everything that’s wrong. But if you’re out there connecting with other survivors, you’re sharing the ups and the downs, you’re not alone. It really helps. The advice I like to share with other people who have lung cancer is if you don’t like what one doctor says, it’s very important to be your own advocate. It’s your life!

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LaurenH

Back in 2009, my mother-in-law, Sue Fosco, was diagnosed with lung cancer. It came as a huge shock to our family. Sue was a very healthy oncology nurse and non-smoker. At first, she thought she had a cold or sinus infection, but it wouldn’t go away, so she went in for further testing. The people administering the tests were her colleagues and friends at the Edward Cancer Center in Naperville. Sue was diagnosed with Stage IV bronchoalveolar adenocarcinoma in both lungs.

Sue was a wonderful wife, mother, grandmother, daughter, friend, and nurse. When she passed away in 2011, my husband Dominic and I were in a fog. The day she passed, LUNGevity found us through an email from the Carlinsky family. Dominic worked with Mark Carlinsky, whose wife Lisa passed away from lung cancer in 2008. Lisa had been Sue’s patient at Edward Cancer Center. It seemed like there were a lot of connections drawing us to LUNGevity. We looked into LUNGevity and realized it was a great organization, so we set up a page for family and friends who wanted to donate money toward lung cancer research. In November, we decided to walk in Breathe Deep DuPage to help keep her memory alive.  We started a team in Sue’s memory, named “Steps for Sue.” Our team has been walking ever since.

In 2013, the event coordinator Michelle Bowles was looking for someone to be a co-chair for Breathe Deep DuPage. Mark recommended me and Michelle sent me an email. As I read the email, I thought, this is my next calling. Michelle and I co-chaired the event in 2013 and 2014. In 2015, Michelle was ready to take a step down, so I became the coordinator.

Sue’s loss has inspired me to become involved with LUNGevity Foundation and to raise awareness to fight the stigma surrounding lung cancer. I want the question “Was she a smoker?” to disappear. No one deserves to get lung cancer. I want people to know that lung cancer isn’t just a smoker’s disease. Anyone with lungs can get lung cancer.

The most rewarding part of being a volunteer event coordinator is seeing people come to the walk every year. We have had many teams walking for many years and for other teams, it’s their first year.  I want the event to be meaningful and impactful for each team that walks. It’s so important for people to come and see survivors and for people to celebrate the memory of the person they’ve lost. Seeing more survivors at the walks each year shows us that what we are doing is making a difference. I’m happy that more people are living longer with lung cancer because of early detection and targeted therapies and the work LUNGevity is doing.

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Sue Fosco with her granddaughters

 

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Melissa with her family

LaurenH

Ryan Gardenhire's Story

After losing my mother to lung cancer in 2010, I had been looking for ways to help raise awareness for the disease and educate people that lung cancer is not just a “smoker’s disease.” My mother's efforts at raising awareness were very important to her and I wanted to honor her life and efforts by continuing that community outreach.

After participating in Breathe Deep Nashville in 2012, I indicated in a post-race survey that I would be interested in helping out the following year. One of the coordinators reached out to me and asked if I would be willing to join the planning committee and I’ve been involved ever since. This past November was my 4th Breathe Deep Nashville to help plan.

We usually start working on our November event in March or April, so there is obviously a lot that goes into putting together an event like this. The reward for me after all that is honoring the same group of survivors year after year knowing that we are helping to fund a Foundation that supports them in ways no other lung cancer focused organization does. We are lengthening lives through early detection and focused therapies. We are providing survivors and their caregivers with the support and resources they need. We are making a difference.

We are very fortunate in Nashville to have an amazing group of doctors at the Vanderbilt-Ingram Cancer Center working on research and treatments to help end this disease.  I choose to continue volunteering my time for the LUNGevity Foundation because some of the funds we raise come directly back to Nashville. Dr. Jonathan Lehman was a recipient of the LUNGevity Career Development Award in 2016. Through that grant I can see our fundraising efforts impacting his amazing research.

I hope our fundraising efforts will help us to realize a world where no one dies from lung cancer: a world where no one has to lose their mother too early like I did.

 

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Ryan is pictured sixth from the left. The theme of Breathe Deep Nashville is "Stache and Lash" so participants grow or wear fake mustaches and false eyelashes to add creativity and laughter to event day!

LaurenH

Lauren Humphries' Story

Nothing can prepare a man and his family for a lung cancer diagnosis. I remember the night five years ago when my mom called me with bad news. My uncle, Keith, had just been diagnosed with Stage IV lung cancer.

Keith is my dad’s youngest brother, who is always making everyone laugh and giving the best bear hugs. He is a husband, father, and small business owner who coached all of his kids’ youth sports teams and never missed a game. My grandfather passed away from paranasal sinus cancer when Keith was seven, so he grew up without really knowing his dad. Because of that experience, Keith is determined to never leave an empty seat at an important family event.

The night we found out that our beloved uncle had lung cancer, my sister and I cried together and hugged each other for a long time. We started asking questions like, “How did this happen?” and “Why him?” and “What does this mean?” Then we realized there was only one question we could actually attempt to answer: “What do we do about it?”

My mom was at our local farmer’s market when by chance, she met Cindy, the founder of Breathe Deep Baltimore, one of LUNGevity’s grassroots events. Cindy started the Breathe Deep Baltimore walk in 2008 in loving memory of her mom. The event was taking place in Oriole Park at Camden Yards. Monica Barlow, the Orioles’ former PR Director who had the same ALK-positive lung cancer as my uncle, was the keynote speaker. We had to be there.

Our first Breathe Deep walk as a family was hopeful and somber as we celebrated survivors and honored those we’ve lost to this terrible disease. Monica spoke about the groundbreaking research that LUNGevity was funding and how important it is to be strong advocates. That was the first time that my uncle met other lung cancer survivors. Until that day, he didn’t have anyone to talk to who understood what he was going through.

Breathe Deep Baltimore felt like my family was part of an important movement, and that we were accomplishing something together that was much bigger than what any one of us could have done alone. I had just finished grad school and all of my work and volunteer experience was in marketing and event management, including positions with Susan G. Komen and American Cancer Society. I decided to join the Breathe Deep Baltimore committee and help plan future events. I had no idea then that this group of wonderful people would become like family to me.

This September marked my uncle’s fifth year as a survivor, a milestone we celebrated as a family. His first year of treatment included chemotherapy, radiation, and surgeries. He took Xalkori, a targeted therapy drug, for three and a half years and recently switched to Alectinib, both with very positive results. This September also marked my fifth year on the Breathe Deep Baltimore committee and my second year as a LUNGevity employee.

Working for LUNGevity, first as a volunteer and now as a full-time staff member, is incredibly rewarding. As the Digital Community Manager, I interact all day on social media and our online communities with patients, survivors, caregivers, and advocates. I am incredibly thankful for the people who are working to create a world where people with lung cancer live longer and better because of early detection and more effective treatments. I am grateful for the opportunity to know and work with these people and to help support others whose lives have been affected by lung cancer. By working together, I am determined and optimistic that we can stop lung cancer. There are always an infinite number of reasons to be hopeful.

 

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LaurenH

Terry Gillespie's Story

Hi my name is Terry Gillespie.

I am a 13-year lung cancer survivor.  I started my lung-cancer journey back in October 2003.

In the fall, I am prone to sinus infections, so as usual I got one.  It just so happened this time that I let it go a little longer because I had just lost my job and had no insurance.

When it got so bad and I coughed so hard that I had a little blood in my sputum, I called the doctor and made an appointment.

My doctor prescribed the usual antibiotics, and when I mentioned that this sinus infection was worse than normal, and that I must have hurt my throat coughing because I saw a little amount of blood.  She said that she was concerned that I may have pneumonia or TB, so decided to run tests.  That was when my world turned upside down.

At that time, there was very little information about lung cancer treatments and very grim survival rates.  I had very little support.  After my biopsy, it was confirmed that it was cancer. I told the doctors that I did not want to know what they thought my end date would be.  I was going to die at the ripe old age of 80, in my sleep.  So on we went with the treatment with no mention of a termination date.

I had my left lung removed, and then I had radiation and chemotherapy.  I was bald and beautiful. I also had some pretty bad side effects.  During surgery, my surgeon accidentally hit my right vocal chord and I was without a voice for two years.  Let me tell you, I can now hit my target directly when I throw things to get attention!

I have permanent sciatica on my left side.

I am one of the lucky lung cancer survivors and I have not had a recurrence.

People tell me that I look great for having lung cancer.  It makes me wonder . . . What do people think that cancer survivors look like?

The reality is that many lung cancer patients are not so lucky. 

I chose to be an advocate for lung cancer awareness as soon as I physically and mentally was able.  I decided that I can help make a difference.  My motto was “Nobody Deserves to Die from Lung Cancer.”  I still believe that today.  We have to do whatever we can to raise awareness, to educate people that this is NOT only a smoker’s disease, and to raise money for research to help eliminate lung cancer.

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(Terry, right, pictured with fellow survivor and friend Tommieanne Bolden, at National HOPE Summit)

LaurenH

Alisa Brenes' Story

Hello there …. my name is Alisa Brenes and I am a 16-year Stage 3 lung cancer survivor.

I guess you can say my lung cancer journey started before I was born.  My mom, my maternal grandfather and many of his siblings all died of lung cancer.  I am motivated to do my part to end our family history now.

I have been a lung cancer advocate for over ten years, most of my work behind the scenes, but little by little I’m coming out and sharing my story.  I hope to follow this introduction with more blogs, sharing hope and spreading awareness.

I was diagnosed in July of 2000, just a few months after my mom passed away from lung cancer.  It still boggles my mind that I was taking care of my mother while the same cancer was growing inside my lung.  I had a third of my lung removed and followed up with chemotherapy.

I am a single mother of twin boys who were 10 years old at the time.  They were in fourth grade and I didn’t even know if I would be there for their elementary school graduation.  Thanks to God and my amazing doctors, I lived to see my twins graduate from college.  My next goal is to see them happily employed :)

I was diagnosed before social media and message boards were around,  the world wide web was fairly new and there wasn’t even google yet.  I felt lost and had never met another lung cancer survivor.  Within a few months the internet started becoming more popular and all that changed.  Somehow (thank you Universe!) I found Katie Brown’s original message board and through that I not only connected with other Survivors, but I was introduced to the first Walk for a Cure (now called Breathe Deep NYC) and have been volunteering ever since.  And if that wasn’t enough to keep me hopeful and connected (and it was …) I was introduced by Katie and LUNGevity to Hope Summit!  If anyone wants to know what it is like to be in a room with hundreds of survivors (but no one ever gets lost in the crowd, somehow we end up like one big family) just come to Hope Summit.  The energy is amazing and you leave the Summit with life-changing knowledge, friendships and Hope.

This is not a journey I chose or one that I would wish on others, but the truth is I've grown so much through this and have such an appreciation of every day and the friends I now call family that I've met through lung cancer have enriched my life beyond words!  As strange as it might sound to some, I can actually say that my cancer diagnosis brought me many blessings.

It is my desire to share hope and friendship with other survivors and help spread awareness so one day we will live in a world where no one dies of lung cancer.

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LaurenH

Don Stranathan's Story

I am now on disability, fighting my cancer is a full-time job. In my past life I was the Business Development Manager for a technology company in Rohnert Park, CA. When not doing advocacy work you can usually find me in a spin class or out in Mother Nature hiking or biking with my friends.

I was dx with Stage 4 Lung Cancer in June of 2009. Since then I have done radiation, six cycles of chemotherapy Taxol, Carbo and Avastin for the lung cancer. That was followed by six cycles of Genzar for metastases to my liver. In March of 2010 because I was non-small cell adenocarcinoma I was given a targeted therapy (Tarceva) to try.  At that time it was less expensive to try the medication and see if it worked than sending the tissue out for testing, Tarceva kept me stable for over six years.

During those years I was given x-rays and CT scans that showed no change in the tumors in my lungs, so it was thought that since the Tarceva was working so well I had the EGFR mutation. As I became more aware of genomic sequencing and knew my tissue had been saved I requested that it be tested for the basic mutations EGFR, ALK, after checking I was told there was not enough tissue for testing.

That was also about the time I realized Tarceva wasn’t going to work forever and I probably needed a plan B. Having more knowledge about genomic sequencing I knew high on that list should be a new biopsy to have my tumor tested.

In November of 2015 I was working on my friend Tim’s ranch and after a long day of shoveling decomposed granite I notice when Tim and I retired for the night my left leg was swollen.  I post everything on social media, so when I posted a picture of my leg I received more than one suggestion it might be a blood clot and I should have it scanned. That scan triggered my Oncologist to order a CT scan the following week and that scan revealed a 1.2 CM tumor in my left lung.

This is when my plan B kicked in. Before requesting a needle biopsy of the tumor I wanted conformation the cancer hadn’t metastasized to any other location. So first I requested a PET scan, followed by a bone scan and a brain MRI. It was an all-clear, so now I knew it was only the new ½ inch tumor in my left lung I had to confront. 

In December of 2015 I had a needle biopsy performed. I asked to speak to the surgeon performing the procedure. He came in as I was being hooked up with an IV. I stated to him that when he was in there snapping away to please don’t be polite, take as much as you like. He shared with me he was just given the request for the biopsy and didn’t know my story. I explained the tissue was going to be for genomic sequencing and I needed as much tissue as possible. After the procedure he came into recovery room with a big smile and shared that I would be proud of him. I knew from my research genomic sequencing takes a larger sample so didn’t want to go back for a second procedure.

I post my entire cancer journey on social media and have connected with doctors, scientist, nurses and bloggers, also concerned friends and family that all care about my wellbeing.  So I know if I post my treatment plans I will hear from someone if I am off track.

I posted about my tissue biopsy and I received a private message from my friend Bonnie J. Addario the founder of the Bonnie J. Addario Lung Cancer Foundation, she asked if I was sending the tissue to Foundation Medicine? I said I didn’t think my healthcare provider would cover the cost. She gave me a person to contact and within a couple of days my tumor was on the way for testing. Foundation Medicine said they would bill my insurance and if there was an issue I could apply for financial assistance, but my wellbeing was there first priority.  

I had the results within two weeks of Foundation Medicine receiving my tissue sample. I was very impressed with the report, over 24 pages. It discussed my alterations and statics about my alterations, and even ones that I had expression for that did not yet have treatment protocols. The report also listed FDA approved treatments for my alterations and all the clinical trials that were available.

Since my girlfriend Penny Blume passed in 2014 from small cell lung cancer I have dedicated myself to advocating for lung cancer research and awareness. I became a Consumer Reviewer for the Department of Defense Lung Cancer Research Program in 2013 and advocate for Lung Cancer groups like the Lungevity Foundation, Team Draft and involved with Lungevity Foundation Lifeline support program which is one on one support for newly diagnosed patients.

My connections with these groups have put me in touch with some of the top doctors, researchers and advocates in the lung cancer community. With my Foundation One report in hand I set out to look for a second opinion. I was shocked to find out after being stable on Tarceva for six years I had none of the common mutations, including EGFR. What showed up on the Foundation One report was NTRK1 without fusion and PIK3CA.

I was able to connect with Dr. Jeffery Engelman at Mass General Hospital for a second opinion. Dr. Engelman reviewed my reports and agreed with my decision that Opdivo (Nivolumab) was my next best option; I am now on my eighteenth infusion and feeling great and again have stable disease.

When I was diagnosed in 2009 with stage 4 non-small cell lung cancer I was given 8-12 months to live. It is because of precision medicine that I am still writing my story almost eight years later, and still mountain biking and enjoying life to the fullest.

Penny never had the opportunity to benefit from precision medicine or treatments like immunotherapy. Penny passed on 1-21-2014 at my home in California surrounded by her family.

My last promise to Penny was I would continue to advocate for lung cancer research and awareness. This opportunity to share our story helps me keep that promise to her, so I thank you.

Be well,

Don Stranathan

Stage 4 Lung Cancer Survivor

 

 

 

 

 

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LaurenH

I first got involved with LUNGevity in early 2013. My husband had been recently diagnosed with lung cancer and I was looking to participate in a walk to raise the much needed funds for research.

I chose to work with LUNGevity because I saw that they had many walk/runs throughout the country. Prior to my husband's diagnosis I didn't know much about lung cancer and like most people believed it was unlikely to ever touch my life as we both have never smoked. After his diagnosis I learned that it's the deadliest of all cancers yet the least funded. And LUNGevity is one of the very few that focuses on lung cancer specifically.

I contacted LUNGevity asking if they had a walk in my area - Albany, NY. I first spoke with Diana Aldecoa, the Vice President of Breathe Deep Events, and she indicated that the closest was Syracuse and asked if I was interested in starting one. I organized the first Breathe Deep Albany that year.

I believe Breathe Deep Albany has been growing steadily in terms of participation and money raised over the last four years. It's been a welcome and much needed event in our community to support those bravely dealing with this disease. It's been a way for survivors to support each other and spread the word about lung cancer. It's a place for those who have lost someone to remember them and raise money in their memory to help those living with the disease and hopefully to find a cure so others don't have to go through what their loved one had to endure.

I know Breathe Deep Albany is very much appreciated and supported by NYOH (New York Oncology Hematology). My husband's oncologist has been a lung cancer specialist for many years in this area and has said that this event has been needed in the community.

I'm proud that we've built this event up year by year. The first year we raised $15,000, second year $22,000, third year $25,000 and this past year nearly $43,000. That's over $100,000 raised in our little community. I'm always very proud on event day when everything comes together. The program we hold before the walk is inspiring. We hear from brave survivors who are willing to tell their stories and the remarkable doctors in the area telling us all the new developments on the horizon.

I hope our fundraising efforts raise enough money to find a cure or at least the next line of defense in terms of meds. I'd also like to see a test developed to detect lung cancer earlier for everyone so that it becomes routine like mammograms.

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