News

October 2019

If Joe Buckheit’s son hadn’t needed hernia surgery, Joe might not be here today.

At 49 years old, Joe was a proud father of three – two girls aged 12 and 10, and 6-year-old Michael. Joe is the kind of dad who, when he found out about Michael’s hernia, decided to have a non-painful lump in his own groin checked out. He volunteered to have the procedure first, “to show him it would be okay.”

To everyone’s surprise, pre-surgical testing revealed a mass in the lower right lobe of Joe’s lung. A routine procedure suddenly turned into something more urgent. “Off we go with my scans to MSK,” Joe remembered. “The nurse does the intake and tells me the doctor will be right in. Then I look and see Doogie Howser standing there – the doctor was so young! He was incredibly supportive and went right to doing a whole bunch of tests. I thought, ‘This is the place for me.’”

He went into surgery expecting that it would be the only treatment he’d need. “I went under at 6 PM. I woke up in the recovery room and looked up at the clock. It was 7:30. I hoped it was morning, because otherwise he hadn’t done the surgery.” Joe’s lung cancer had spread to the lymph nodes, and he was going to need much more extensive treatment.

Joe brought his wife and her sister – a nurse – to the oncologist, armed with a list of questions. “I had a friend who had been diagnosed with lymphoma and had been given a 98% survival rate,” he explained. “So in my head, I thought maybe my chances were 50/50. I asked the doctor the success rate for my Stage 3B cancer, and he said 17%. I figured he heard me wrong and thought I had asked him the failure rate, but no – he was telling me that I had a 17% chance of being alive in five years.”

“I like to have the best case and worst case scenario, so I asked what would happen if I did nothing. He said I’d likely be dead in five or six months.”

Joe was determined to do what he could to stay alive for his family. His wife was instrumental in his treatment, setting up his appointments and tracking his medication. His sister-in-law lent her support, and his friends made sure he got out of the house.

Joe had two rounds of chemo and one round of radiation, going to work every day other than treatment days. “I wanted to show the kids things were OK.” Despite the sense of stability, they knew Joe had a serious condition. At Christmas, his son wrote a letter to Santa.

It broke Joe’s heart, but the answer – which came from a stranger answering letters from children on behalf of Santa – was astonishing.

Joe carries a copy of that letter with him.

About two years into Joe’s lung cancer journey, he felt a pain in his right leg and collapsed in the kitchen. His sister-in-law urged him to see a doctor immediately in case it had been a stroke. The cancer had metastasized to Joe’s brain. He had a tumor in the left lobe and two smaller ones on the right – he now had Stage 4 lung cancer. After diagnosis, he had whole brain radiation and then brain surgery. He continued with annual MRIs with a neurologist and CT scans with his oncologist.

A few months ago, Joe’s neurologist said something remarkable during a routine exam: “I think you’re cured.” Annual MRIs are now optional. His oncologist continues to monitor him, but Joe says he feels great except for ongoing balance issues from the brain radiation.

What may be most remarkable of all is that 15 years have passed since Joe’s initial diagnosis. Michael is now 21 years old, and Joe is 64.

In 2005, the year after Joe found out he had lung cancer, he signed up for the inaugural Strides for Life. The family of his friend with lymphoma has a summer house in the Hamptons, and they gathered there after the walk. “I’ve done it every year since then,” he said. “The most difficult was right after the whole brain radiation. Normally I’d run a little and walk a little, but I was very unsteady. I said, ‘If I have to crawl across the finish line, I will.’ I had one friend on each side, and I finished dead last with the cop car behind me.” The Buckheit Brigade is growing and going strong!

How has Joe maintained hope over the past 15 years? “I’m not a guy who is outwardly emotional,” he said. “There are times when I would look at myself and say, ‘You think you’re so freaking tough, prove it.’ I know people ask, ‘Why did I get this?’ My question is, ‘Why didn’t I die?’”

Joe looks forward to the day when luck is no longer a factor, and noted how lung cancer research has transformed the way the disease is diagnosed and treated. The tests that would have revealed a treatable mutation in his lung cancer didn’t exist in 2004. Patients today have more options than ever. “If you’re newly diagnosed, trust your doctors. They know things that they never knew before,” he observed. “Try not to miss any treatments in order to give yourself the best chance to succeed.”

November 2016 | As told by Jennifer

A year and a half ago, I was feeling terribly run down and getting very winded from normal activities in spite of being fit and athletic. I was coughing, having trouble catching my breath, and experiencing some mild wheezing. These symptoms led me to my primary care physician, and when I didn’t feel better on antibiotics within a few days, she ordered a chest x-ray.

On a busy Saturday, I let my husband Andy manage our kids’ sports schedules and walked myself into the emergency department, expecting a case of walking pneumonia or bronchitis. Nothing could have surprised me more that day than to learn that I have Stage IV metastatic lung cancer.

As a lifelong athlete through college and now just “for fun,” I couldn’t understand how someone who follows a healthy diet, exercises regularly, and competes in triathlon and running events could possibly have incurable lung cancer.

I fought during the next month to become well enough to begin chemotherapy, knowing that statistically I would be an outlier if I could survive beyond a year or two. But 17 months after diagnosis, I am living very well as I continue chemo to keep the cancer in my lungs stable. The cancer that was found initially in my adrenal gland and liver is now undetectable.

Unfortunately, debilitating headaches and vomiting six months ago led to the identification of two lesions in my brain. Both were successful removed via craniotomy. Four months later, as I was once again feeling my “new normal,” MRI identified another brain lesion, which was successfully treated with stereotactic radiosurgery. I have recovered from these detours and use them as an opportunity to refocus on my overall wellness – which I know not to take for granted. I have maintenance chemotherapy every three weeks and MRI of my brain every few months to check for cancer growth. Despite these challenges, I have been determined to take control of the only thing that I can control: my mindset and gratitude each day.

Today, I have resumed most of my normal activities while working around the many side effects and appointments: managing the household and parenting our 15-, 12-, and 10-year-olds; coaching (and playing) volleyball; practicing yoga and walking our dogs; volunteering at my children’s school and being active in our church; and enjoying the daily joys of carpools and family dinners.

I am constantly challenged to accept the limitations that living with lung cancer places on my life and the emotional fear that can easily take hold if I am not vigilant in choosing to focus on the beauty in each day rather than worrying about the days to come. I work very hard to draw from my faith, practicing meditation and prayer focusing on how great my life is rather than how terrible my diagnosis is.

I have become as knowledgeable as possible about lung cancer in order to advocate for myself with all the members of my medical team, and I eagerly pay attention to research findings that I hope will help me and many others live better and longer with lung cancer.

Andy, my amazing husband of 22 years, has been instrumental in helping us navigate life with lung cancer, as have our parents and siblings. My sister (a nurse) and countless members of our community have supported me in so many ways: meals, play dates for the kids, a volleyball tournament fundraiser, encouraging prayers/emails/text messages/phone calls, and joining me to walk the 2016 Kansas City Free to Breathe 5K and helping our Team Gratitude raise the second greatest amount of money of any team at the event this year.

I feel an urgency to share information about lung cancer since it is so largely overlooked, especially in light of the fact that lung cancer claims more lives each year than breast, colon and prostate cancer combined. I tell my story to anyone who will listen, hoping that I can be part of a movement to increase funding for lung cancer research so that it might one day receive funding proportionate to the impact it has when compared with other cancers.

Lung cancer does not discriminate; financial support shouldn’t either.

No one deserves lung cancer, and I want to help end the negative stigma unfairly attached to lung cancer and help raise funding to find a cure. I hope to increase my advocacy efforts now that I am back on a predictable schedule of chemo every three weeks. I know that for me and many others, we are in a race between our cancer growth and research breakthroughs.

In the short time since my diagnosis in April 2015, the landscape has changed tremendously as researchers discover new breakthroughs. The options are broader for anyone diagnosed today. I encourage anyone living with lung cancer to ask questions of doctors or reputable organizations; to access palliative care, psychology, nutrition and other resources to complement oncology; to ignore the larger internet or “hearsay” information; and to focus on how you can make each day beautiful.

Living with cancer forces patients to acknowledge how little control we each have, but the one thing we can control is the attitude we carry and share with others. Choose to be a person of gratitude who lives in the present and takes charge of living a quality of life filled with hope. When I remain too long in that dark place of worrying about myself, all I need to do is look around the waiting room at the cancer center and see how many others are suffering more than I am today. It is only in my mind and heart that I can control this cancer by allowing it to fuel hope, gratitude, and love – instead of letting it take away my joy.

May 2019

Jen is someone most people would describe as a supermom: active and on the go with three children ages 4-10. That’s why she was surprised when she couldn’t shake the post-nasal cough she developed over the summer of 2017. “I hadn’t been feeling great and thought allergies were the problem. I almost never get sick, though,” she recalled. “I took a full course of antibiotics and somehow felt worse afterwards. They took a chest x-ray and the results showed some abnormalities.” Things escalated quickly from there.

Jen was admitted to the hospital after her neck became so swollen that she had difficulty breathing. Eight days later, the doctor broke the news that Jen had a mass in her lungs—one that was indicative of lung cancer. “What do you mean, I have lung cancer? This is crazy!” Jen recalled thinking after hearing she was facing stage IV non-small cell lung cancer at the age of 38.

Many people don’t think of lung cancer as a women’s issue. What they don’t realize is that lung cancer claims the lives of more women than breast, ovarian, and cervical cancers combined.

Fortunately for Jen, her healthcare team performed biomarker testing on her tumor, which tested positive for the cancer-causing ALK genetic mutation. This insight opened up Jen’s options for treatment. “They put me on alectinib (Alecensa®), which helps treat ALK positive lung cancer tumors. It helped shrink and then stabilize the growth of my tumor,” she explained. “After just four days of being on alectinib, I felt great and I haven’t looked back since.” Jen has fondly nicknamed alectinib her “miracle drug.”

And Jen’s zest for life never wavered. She searched the internet for ways to connect with other ALK positive lung cancer patients and advocate for more research behind life-saving lung cancer treatment options. Jen joined two patient advocacy groups, ALK+ and ALK Fusion. “We figured, let’s take matters into our own hands,” Jen recalled discussing in her group meetings. “I want doctors to understand the patient experience more, and there’s so much positivity that can arise from collaborating with them.” Today, Jen takes a stand for better lung cancer treatment by fundraising—she helped organize and fundraise almost $700,000 so far—and by sharing her story at conferences and community events.

“At the end of the day we are people, and we all want the same thing. We need more treatment options so we do not have to constantly face this idea of the ‘end of the road.’ I’m just trying to save my life, and my life is in the hands of science.”

“I need medicine, here and now. I will do anything to stay here with my children. This is my reason.”

Jen channels her energy into reading up on the latest lung cancer research and traveling to speak with oncologists, researchers and community members to emphasize the urgency of being able to live beyond a lung cancer diagnosis.
“Every day is a new day and a new chance,” she explained.

July 2019 | As told by Felicia

Like most people, I had my normal routine – kind of on autopilot, like the robots we become. One day, I wasn’t feeling like myself, but I did the robotic thing and went to work as usual. I felt like I had a bad cold coming on and it was very hard to breathe, so I took a long lunch and planned a trip to urgent care.

When the nurse checked my vitals, she asked how I managed to get to the clinic by myself operating on only 30% oxygen. She was surprised I wasn’t in a coma. I went by ambulance to University Hospital and spent three days in the ICU, diagnosed with pulmonary edema and high blood pressure. I was put on continuous oxygen and told it would only be needed for a few weeks. But several follow-up visits later, nothing had changed. I was scared and fed up, so I was a little assertive: “I’m not leaving here today with the same information you’ve been telling me the last few visits. I do not feel good, and I need to know what the h*ll is wrong with me!”

The medical staff conferred for about a half hour and sent me for a CT scan, which confirmed a fist-sized tumor and lesions throughout both my lungs. I didn’t get to go home – I was immediately admitted to the oncology floor. Three days later, after numerous tests and five liters of fluid drawn from my lungs, I was diagnosed with stage IV lung cancer.

That was on February 7, 2017. I had never smoked, and lung cancer came as a complete surprise. I felt like my whole world had crashed. I kept trying to play back in my head: were there any symptoms, was there anything out of the norm I had missed? Why me?

The next year, I was in and out the hospital with pneumonia, rhinovirus, and a blood infection. I had two types of chemo plus radiation to shrink my tumor because its position was causing my repeated bouts with pneumonia. The last round of chemo was aggressive. My hair was gone in two weeks, and I lost much of my hearing – 70% in my left ear, 30% in my right. It never returned, so I wear a hearing aid.

In December 2017, my oncologist found a clinical study that was available for adenocarcinoma patients like me. I jumped on the chance without hesitation. I just needed to try something new that might make a difference without all the side effects I’d been experiencing. The medication is a pill without a name, just a protocol number. About 250 people in the U.S. are taking it. My side effects are diarrhea and mild headaches, which is nothing compared to what I had gone through: fatigue, neuropathy, nausea, skin rashes, hair loss, and hearing loss. The tumor has shrunk about 20% since I started the trial, and I was able to go back to my job at Core-Mark International part-time in April 2018 after being on medical leave for over a year. I have worked since the age of 16, and I hated being away from my job for so long. That August, I went back to full time. I was promoted to Customer Service Manager and received the 2018 Employee of the Year Award.

Work takes my mind off my illness, and my co-workers have given me a lot of support. Core-Mark held a fundraiser and a silent auction on my behalf last summer at a ranch and raised over $5,000. I still can’t believe how much my life has changed. Having some normalcy helps me get through it all. I found LCRF when I volunteered to help with a Free to Breathe Walk in my city, and I was glad to do something to promote awareness of lung cancer and the need for research.

I thank God for every day that my name is on the wake-up list. It’s so easy to let cancer take over, mind, body and soul. I try to be a living testimony for people, to help encourage others with my drive and energy to fight.

Cancer picked me; I didn’t pick cancer. I tell everyone that cancer picked the wrong girl! I am a soldier who can’t stop — and won’t stop. I love being a voice for lung cancer and welcome the chance to talk about my journey. I’m lucky to have the support system from my family and friends. I believe and know that I am truly blessed.

March 2017

My mother died of lung cancer, and I was secretly worried I would, too.

In spring 2008, I had some puzzling health issues that brought me to number of specialists and finally a pulmonologist. I confessed during one of my appointments that I had smoked for several years, although I had quit 15 years earlier.

He did a spiral CT and told me in no uncertain terms that I did not have lung cancer. We continued the diagnostic journey, and he finally discovered a tracheal stenosis. Yet another specialist treated me with a procedure to dilate the trachea. What a relief it was to breathe more easily – in more ways than one. After many years of wondering, I finally knew that I did not have lung cancer.

A few months later, I started coughing up small amounts of blood. My doctor suspected sinus issues, but to be on the safe side, he went back in to look at my trachea. He found a tumor breaking through the lower lobe into the middle lobe of my right lung.

I had surgery to remove the lower and middle lobes of my lung and was diagnosed with Stage IIIa lung cancer. Following a fairly quick recovery period, I began four rounds of chemotherapy – two weeks on, one week off – with Cysplatin and Gemcytabin. That was hard. I was given a 38% chance of surviving five years. I agreed to participate in a phase 3 clinical trial for Erlotinib – Tarceva. Although my diagnosis was devastating, I knew I could survive.

After treatment, it took me some time to recover. I was working full time and began a vigorous exercise routine. It took about a year to feel healthy and strong again, but I finally felt great. I became quite a vocal lung cancer patient.

I wasn’t prepared for the judging nods that whispered, “Lung cancer? Oh, you smoked, well…” The fact is that my smoking did not cause my lung cancer. My cancer and my mother’s were both caused by radon, which is an issue in my home state of Oregon. I grew up in areas with especially high radon levels. I wanted to put a new face on lung cancer and didn’t hide my diagnosis. I still don’t. I educate others as often as I can about lung cancer and radon, particularly about the disparity in funding for lung cancer research.

Breathing issues return

Six years after treatment – in spring 2015 – I began experiencing new breathing issues. I wasn’t too worried, as all my scans since my first post-surgical exam had been clean. My doctor discovered another tracheal stenosis. I joked, “Be careful now, the last time you went in there, I came out with Stage III lung cancer.”

Little did I know, I had cancer cells in my lung near the original surgical site. Again, I was devastated. But the next day, I took a deep breath and figured out what to do next. The next several months were full of more tests, and even more differing opinions. They could remove the rest of the lung. High dose radiation and chemo had a 90% success rate.

Well, the cancer cells were located too close to my esophagus to risk high dose radiation, so the radiation oncologist was only comfortable with a low dose – which had a 30% success rate. After running multiple tests, my surgeon felt I could tolerate the complete loss of my lung. I chose the surgery, but the day before it was to take place, the surgeon called me with another option. He thought he could get rid of the cells with laser ablation in a simple office visit.

I had the ablation. Unfortunately, a biopsy one month later showed remaining cancer cells, and a new lymph node tested positive. I felt so lost. I didn’t know who to trust or what to do. I knew I needed to decide on my next step, but I didn’t feel capable of making that choice.

Finally, I called my original oncologist, who had moved out of state. I asked him if he would look at my scans and other test results and give me his opinion. A few days later, he called to say he agreed with my current medical oncologist – he felt I should undergo low dose radiation and chemotherapy.

I immediately relaxed and knew that was the right decision. I trusted him, and I was confident I could handle the treatment. After all, I’d done chemo before and radiation couldn’t make it that much different. For six weeks, I underwent daily radiation and chemo – this time it was Cysplatin and Etoposide. I grossly underestimated the side effects of radiation. I’d managed to care for myself during my first bout with lung cancer, but never would have been able to do so the second time without the help of my sister. She was invaluable. I finished treatment almost a year ago. Although I’m not quite 100% better, I’m close.

Hope for the future

I remain optimistic for my future and the future of lung cancer treatment. I’m participating in a phase 2 clinical trial for a lung cancer vaccine, and the data is promising. I’m an active supporter of Free to Breathe (now merged with the Lung Cancer Research Foundation) and its specific focus on lung cancer research. (The photo at the top was taken at the August 2016 run/walk in Portland. My team is Positively Breathtaking!) I hope to work within the state of Oregon to improve the general public’s knowledge of radon and its life-changing effects.

I appreciate the opportunity to share my story with you and would like to ask you to do two things. First, help me reduce the stigma and change the face of lung cancer.

Second, be your own advocate. Listen to your body. Find a healthcare provider that you trust instinctively. Both times I had lung cancer, my body tried to tell me something was wrong. If I had listened to those who recommended I stop at any point along my now eight-year journey, I believe the outcome would have been much more grave.

Springtime twice brought me a lung cancer diagnosis. This spring, I am beginning a new journey that brings me joy. I am frequently reminded of a quote by Christopher Reeve. “Once you choose hope, anything is possible.”

July 2016

As a school teacher, I’m on my feet much of the day and was having some odd symptoms. I was told by the nurse at the school to see a doctor, and when I had passed at out school I was taken to the hospital and later diagnosed with lung cancer. Originally doctors thought it was stage 4 adenocarcinoma, but it was later restaged to stage 1B lung cancer. I was only 29 at the time, and it was all I could think about. I was very anxious and overwhelmed by all of the unknowns associated with my diagnosis.

I ended up having surgery. The top left lobe was removed, and I had 4 rounds of chemotherapy. I was not eligible for a clinical trial, but would have considered one. I had two mutations, but there were no trials at the time. Today, my condition is stable, and I have been blessed with two wonderful children!

After surgery, I had lost my voice and had to adapt to my new lung capacity. This was a big challenge, because as a teacher I needed to be able to yell or read a book at any moment of the day without thinking twice.

Life after treatment was all consuming of my emotions and energy, but I had a strong support system throughout the whole process. My mother took me to all of my appointments, scans and chemotherapy. I leaned on those closest to me. My friends and family were a big help.

I found a few things to help make my journey with lung cancer easier. I avoided reading too much on the internet. There is so much out there, and it can be overwhelming. I also did not ask the doctor questions that I didn’t want to know the answer to. All of the medical terminology was just too overwhelming to me. I put my trust in my medical team.

There are a ton of resources available for people living with other cancers, such as breast and prostate, but very few for lung cancer. It can be hard to find a support group for lung cancer survivors, but I highly recommend getting “plugged in” with one. Just talking to someone who has been there can be helpful, and it can be therapeutic to share your own story.

In the 4 years since my diagnosis, I started Cassie’s Crew in the Dallas Free to Breathe Walk and become an involved advocate, committee member, team captain, donor and ambassador, raising over $110,000 for lung cancer research with my team. It has been a great way to give back and stay connected to the lung cancer community.

May 2017 | As told by Beth

I wasn’t home for Christmas in 2012: I was in the hospital with mysterious respiratory symptoms, and a stubborn “walking pneumonia” that hadn’t responded to antibiotics or steroids.

The new year brought further challenges. Just after New Year’s Day 2013, I received a phone call with the official news that I had been diagnosed with advanced non-small cell lung cancer. I’d had a biopsy while I was in the hospital, so I knew cancer was a possibility. It seemed so impossible, though. All I knew about lung cancer was its association with smoking, and I had never smoked.

I didn’t know anyone with lung cancer or anyone who’d experienced it in their family, or so I thought. I felt alone and didn’t know where to go for help. At first I got most of my information from my doctors and was fortunate to have access to specialists at some of the top cancer centers in the country. When a thoracic surgeon told me that my cancer was Stage IIIb or IV, that I was not a candidate for surgery and that my cancer was not curable, I was devastated.

I will always be grateful to Dr. Biren Saraiya, the medical oncologist who managed my treatment for the first six months. He was patient, compassionate, and knowledgeable. With his help I came to understand that even if my disease couldn’t be cured, with treatment I could have a good quality of life.

When standard chemotherapy didn’t seem to be helping me, Dr. Saraiya encouraged me to find out what clinical trials might be open to me. I knew something about clinical trials from briefly being an AIDS activist in the 1990s, so I understood that trials could be the best way to get access to the newest and most promising treatments. Also, even if a trial medicine didn’t help me, at least by taking part in the trial I could help future patients by contributing to knowledge about this disease.

I had another biopsy, and my cancer tissue was sent off to be tested for any mutation or substance that might provide a clue as to what trial might be best for me. That testing resulted in a wonderful surprise, although at the time I had no idea how wonderful: my cancer had the ROS1 genetic mutation. The data was already showing that one of the new targeted therapies, crizotinib (now better known by the brand name Xalkori), was very effective against ROS1 cancer. The research team enrolled me in the study and I started taking crizotinib right away. The results were amazing: within days I felt better, and within months my cancer was no longer visible on CT scans.

I had never heard of Free to Breathe (now merged with the Lung Cancer Research Foundation) until my friend Michelle signed me up for a lung cancer walk in my hometown, Philadelphia. Years before, I had run a marathon to raise money for the Leukemia and Lymphoma Society in honor of Michelle, a lymphoma survivor. Now the tables were turned, and she organized a team to walk and raise money in my honor. We walked with our mothers and our children, and that year our team was one of the most successful at raising funds.

It’s been important to me to connect with other lung cancer survivors. I’ve taken part in two more Free to Breathe walks, and attended an action summit. I’m part of a lung cancer group on social media (hashtag: #lcsm) and a Facebook group especially for people with the ROS1 mutation. It’s through the community of survivors that I now stay up to date on current treatment news.

I think that this moment in lung cancer history is a little bit like the moment in AIDS history in 1996, when the combined power of engaged patients and inspired activists pushed research over a tipping point and all of a sudden a deadly disease became, for many, a chronic but manageable condition. We may not be quite at that tipping point yet, but I can’t help believing it’s very close.

Photo credit: Donna Uettwiller. Donna was part of Beth’s first Free to Breathe team, and Donna’s daughter won the 5K in her age group.