The Power of Molecular Testing and Clinical Trials

Micky MacKinnon

Micky MacKinnon

By Micky MacKinnon

In May of 2015 at age 44 I was diagnosed with stage IV non-small cell lung cancer (NSCLC). I had a very good oncologist and was reassured by several of my existing doctors, so I felt confident. I was clueless in what all I was starting felt strongly that I could beat this.

First things were just a rush of blood work, scans and procedures, including having my port installed. My oncologist wanted to put me in a clinical trial, but I had to get my tumor tested for certain mutations. I had no idea what he was talking about at the time, but went for it anyway. Unfortunately, I didn’t have the mutations needed to start the trial.

So, we moved forward with standard chemotherapy. After just three doses I stopped due to an allergic reaction. I was on a second set of chemo meds for four months and no success. At this point, I went on a short round of radiation to relieve some pain.

Next up was immunotherapy. I felt like it had to work. However, after four months of treatments, I was still in pain and my tumor size increased. Remember how I mentioned I had a very good oncologist? Well, he wasn’t giving up and neither was I! He ordered another round of molecular testing on my tumor hoping I have a certain mutation.

As I was in the middle of my second round of radiation, my list of mutations come back. My oncologist wasn’t aware of any medications on the market for my mutations. We were able to find a clinical trial in Atlanta for my STK11 mutation. He knew nothing about it at the time so we agree to circle back in a few weeks.

After this appointment I went up and updated Facebook to let my family and friends know what was going on with the mutation and the possible trial in Atlanta. Within a couple of days my friends had taken the information and reached out to friends of cancer researchers, nurses, you name it and found out more information about my mutation and the trial.

My mutation is part of the reason immunotherapy did not work for me. I learned that I have a slow but determined cancer. It became clear that the best option for me was that clinical trial in Atlanta.

For the last two months I have been going to Emory in Atlanta for my clinical trial. This new medicine is just a few years old and targets the STK11 mutation. I feel more confident that this is a better path because it is focused on certain areas of my cancer.

My first set of scans showed that the tumors have stabilized and some have even decreased in size! This is only the second time I have had stability since I was diagnosed, so things are going in the right direction!

I know that I have to be more knowledgeable about my cancer. I now do more research and think what my next move will be because this will be a long fight.

I also understand there is always research being done for better medicines and cures so I want to help where I can too.

Through our new program, LungMATCH, we can help you and your loved ones find and understand the personalized treatment options available. Click here to learn more! 

Q&A with MD Anderson Lung Cancer Surgeon

Dr. Ara Vaporciyan

Dr. Ara Vaporciyan

This week we sat down with Dr. Ara Vaporciyan, Professor and Chairman of the Department of Thoracic and Cardiovascular Surgery at M. D. Anderson Cancer Center in Houston, TX to discuss why he chose to dedicate his career to lung cancer, what’s coming down the pipeline for research and the disease and what all women should be aware of when talking with their doctors.

What brought you to the field of lung cancer?
I had always wanted to be a surgeon but I also wanted to be more than just a technician. In many surgical fields the surgeon only intervenes after the diagnosis has already been made and treatment options have been discussed.  However, oncology is one of those fields of surgery where the surgeon is an integral part of the patient’s team.  Even more so, in lung cancer the surgeon can either lead or participate heavily in all aspects of lung cancer care.  That is, he or she can be involved in the diagnosis, evaluation and treatment as well as the follow-up and prevention.  To me this was what it means to be a doctor.

What is the most fulfilling part of working with the lung cancer community? The ability to make an impact in the life of a patient and their family. As a general thoracic surgeon treating lung cancer I can actually cure a large proportion of the patients I serve.  And those that I do not cure alone with surgery I can impact tremendously through my collaboration with oncology, radiotherapy and pulmonology.  That ability to significantly impact a life has tremendous value to me

What is the most important thing for women to know about their health as it pertains to lung cancer?
This disease is not a sideline to breast cancer. Yes, breast cancer certainly occurs much more frequently but the number one cancer killer for women is lung cancer!  Also those individuals who never smoked but still develop lung cancer tend to be women much more commonly than men.  Many women grew up at a time when the risk of lung cancer in women was a fraction of what it is in men.  The assumption arose that these were not diseases that they should worry about.  That has all changed.  In addition, we are starting to learn that genetic factors among women may predispose them to the non-smoking variants of lung cancer as well.

What is in the pipeline for lung cancer, treatment, advancements and research? Where do you see the most promise?
This is probably the greatest time in the history of lung cancer therapy since the advent of safe surgery in the 60’s and 70’s. Just in my short career of 18 years I have seen palpable improvements, especially in the combination of therapies.  Surgery has becomes safer, faster, and with less pain.  What was previously done with a 6- to 8-inch incision and a week in the hospital is now routinely done with a 1.5-inch incision and a few half inch incisions and a stay of less than 4 days.

There are other exciting areas as well.  The new area of unleashing the patient’s own immune system to fight their cancer is truly revolutionary.  Over the next few years our group of oncologists, radiotherapists, surgeons and basic scientists will be not only further unraveling just what allows lung cancers to hide from the immune system but also actively testing multiple new drugs that seek to overcome those barriers to immune response.  We are pushing to develop new and faster ways to assess the benefit of these drugs so we can get them to the most patients as fast as possible while still being safe and responsible.

In 10 years where do you see the landscape for lung cancer? How will things change? What is your hope?
I see us using more molecular and genetic data to decide on what treatment the patient should get. Right now, when a patient arrives we first confirm the presence of lung cancer then we stage the patient.With our rapid expansion in understanding genetic mutations in cancer and how they affect the cancer’s behavior I see us making more reliable predictions about a tumors behavior by incorporating that genetic data.  In the future, instead of just looking at a cancer’s size and shape we will also use the data from genetic analysis to determine the best treatment.

Not only will this genetic data help us predict behavior better but it will also open up new opportunities to treat those patients.  Already we have identified drugs which address the cancer at the level of its specific gene mutation. Still, only about 10% to 15% of the known genetic mutations encountered in lung cancer have a drug available for them.  I anticipate that in the next ten years we will develop a whole palette of these types of drugs and address a wider and wider range of specific mutations we encounter commonly in lung cancer.

The last area I see considerable change in is the role of immunotherapy.  While the targeted agents I discussed above specifically focus on a mutated gene in the tumor, immunotherapy uses the patient’s own immune system to attack the cancer.  Cancers have developed ways to hide from the patient’s immune system and we are now discovering the keys to overcoming that resistance and let the immune system do the job it was designed to do.

What do you hope to see come from MD Anderson’s Moon Shots Program? Our 13 moon shots are focused on building team science. In every example of innovation that you see in the modern world you see examples of team work.  Companies like 3M, Google and even Pixar have recognized that innovation will not come from the single scientist or inventor working in isolation but from groups of researchers working and sharing knowledge to identify truly novel and breakthrough ideas.  The Moon Shots Program gives us the infrastructure to set up that type of collaboration.I see the moon shots as the way to break through to new innovative ideas.  We have brought together basic scientists, surgeons, oncologists, radiotherapists, pulmonologists, radiologists and epidemiologists all working and sharing knowledge to come up with novel ideas aimed at curing lung cancer.  It is the R&D of our efforts.  Promising ideas identified through moon shots projects are spun-off to get additional funding from existing mechanisms, such as government and philanthropy so that the moon shot can continue to focus on innovation.

How do community events like Lung Love Walk Houston make a difference? How do you engage your colleagues to participate?
Events like the Lung Love Walk keep the importance of lung cancer and the work that is still needed at the forefront of those who are in a position to help. Despite our efforts to provide an infrastructure for innovation like the Moon Shots Program we will still need more resources to finish the job that starts within the moon shot.  Events like the Lung Love Walk make the news, get out on social media and eventually make their way to policy makers who can then use that information to help decide how to allocate the funds that might be available.  As I said earlier in this conversation many people, including those policy makers, are simply unaware of how common a problem lung cancer is.  Showing the human side of this disease and showing that there is a broad community that it affects will hopefully help convince those policy makers of the importance and value gained by helping fund these innovations.


About Dr. Ara Vaporciyan
Ara Vaporciyan, M.D., is a tenured Professor of Surgery and Chairman of the Department of Thoracic and Cardiovascular Surgery at the University of Texas MD Anderson Cancer Center in Houston. Vaporciyan began his training in 1982 at the University of Michigan, where he earned an honors degree in cellular and molecular biology. He then attended medical school at the same institution. In 1989, he began his general surgery residency at The University of Texas Houston Health Science Center. Two of the next seven years were spent back at The University of Michigan in a postdoctoral research fellowship in the Department of Pathology, where he studied inflammatory mediators of lung injury. After completing his general surgery training in 1996, he began a two-year fellowship in cardiothoracic surgery, with an emphasis on general thoracic surgical oncology at MD Anderson. He joined the faculty there in 1998.

I Was Never ‘Just’ a Breast Cancer Researcher

Andrew hard at work in the lab.

Andrew Ciupek

By Andrew Ciupek, PhD, Clinical Research Coordinator / Clinical Trials Navigator

Before I joined Lung Cancer Alliance (LCA) this September, I was a breast cancer researcher. My research focus was on targeted therapy and why it stopped working in some patients.

Whenever I presented any results from my research, I showed a graphic stating that breast cancer was the second leading cause of cancer death in U.S. women as background.

Even though I was focused on breast cancer, my eyes were always drawn to the top spot on that graphic- lung cancer. I couldn’t help myself from asking, “How can we get that number to go down?” When an opportunity to work in LCA’s research department presented itself, I thought back to that graphic and knew this was a chance for me to change that statistic.

My experiences in the breast cancer community gave me some very valuable insights. I saw that improving cancer care requires more than just new therapeutics options. I was fortunate to often meet breast cancer patients in the clinic, where I’d discuss their journey and the most important “front lines” issues.

There, I began to see beyond my narrow world at the lab bench. I became interested in issues such as screening and prevention, survivorship and equal access. New treatments can’t help patients if they can’t get them. At LCA, I’m involved in research into all these issues and more, extending my skills and finding solutions to affect the “total care” of cancer patients.

I also learned the impact of community and public dialogue on the success of cancer research. Overwhelming amounts of support and advocacy surround the breast cancer community, leading to awareness and research funding that has resulted in increased prevention and survival.

In contrast, the lack of research funding and public attention for lung cancer confused me at first, especially since it takes the lives of so many more people than breast cancer. While breast cancer research has informed studies in other cancer types, sparking progress across the cancer continuum, the effect could be even stronger with a focus on lung cancer.

I remember saying to my colleagues that if every cancer had this kind of support, we would see results across the board. The breast cancer community also has a strong atmosphere of hope. Many patients approached their journey with a positive attitude- and the public seemed to pull for them.

For lung cancer however, the stigma of smoking is everywhere and hope can be absent from the public and even many patients. To drive progress, we need to change the message from one of stigma and apathy to one of support and hope. At LCA, I am more than just my research work- I can support our mission to be a catalyst to change the message and bring about the community that is needed.

I never saw the need to color my work only in shades of pink; I was never just a “breast cancer researcher.” I want to find new ways to increase survival and prevention, improve clinical care quality and access, and quality of life for both lung cancer patients and survivors – because no one deserves to die.

Updated: Advances in Immunotherapy Keep Coming

By Jennifer C. King, PhD, Director of Science & Research

This weekend at a major medical conference in Denmark some of the highly anticipated research studies about immunotherapy in lung cancer were presented for the first time.

Leading the news was the KEYNOTE-024 clinical trial that looked at Keytruda (pembrolizumab) given to patients with metastatic non-small cell lung cancer (NSCLC) in the “first-line setting” — meaning before patients had taken another therapy. To take part in the trial, patients had to have biomarker testing (also known as molecular testing) and have a high score (>50%) for a biomarker known as PD-L1. Then they were randomly chosen to receive standard-of-care chemotherapy or Keytruda.

The results (which were simultaneously published in the New England Journal of Medicine) showed that patients who took Keytruda had a better response rate (44.8% vs 27.8%) and the median time on the treatment before cancer progressed was four months longer. There was also an increase in the percent of people surviving at six months (80% vs 72%) in the Keytruda group, although it is too early to report the average overall survival for the two groups. Notably, the rate of severe side effects was also lower in the Keytruda group compared to chemotherapy.

UPDATE: Keytruda is now approved as an option for patients with advanced non-small cell lung cancer in the first line setting who show a 50% or greater expression of PD-L1! Learn more.

Take home point: The Food and Drug Administration (FDA) is currently reviewing this data, but it is likely we will see Keytruda as a new option for patients with newly-diagnosed metastatic lung cancer very soon. It is important for patients to get biomarker testing up-front at diagnosis to help them choose the most appropriate treatment option for their cancer.

There was also additional Keytruda data presented showing that a combination of chemotherapy and Keytruda first-line may benefit more patients, not just those who have a high PD-L1 biomarker score. 55% of non-squamous NSCLC patients responded to the combination, compared to 26% responding to chemotherapy alone. Phase 3 clinical trials are currently enrolling (for both non-squamous and squamous NSCLC) to definitively show this difference. Many combinations of immunotherapies and different types of drugs (chemo, radiation, other immunotherapies, targeted therapies) are actively under investigation in clinical trials.

The other approved anti PD-1 immunotherapy for lung cancer, Opdivo, did not fare so well in its first-line trial. In this trial, a broader group of people were considered eligible–there wasn’t as high a cut off on the PD-L1 biomarker level. There were also some different response criteria used and the immunotherapy group had more patients with liver metastases. But using Opdivo in the first line did not result in longer time before cancer progression and did not increase survival when compared to chemotherapy in this trial, known as Checkmate-026. Additional studies are ongoing, including studies of Opdivo given with Yervoy (ipilumimab), a combination approved in melanoma, for first-line treatment of lung cancer.

There was also a third lung cancer immunotherapy drug making news. Data on the new drug Tecentriq (atezolizumab) was presented at the same session. Tecentriq is slightly different as it targets the PD-L1 protein itself, not its partner PD-1 like Keytruda and Opdivo. In the large, Phase III OAK study, patients taking Tecentriq lived 4.2 months longer (13.8 months total) than those on chemotherapy. All patients had received prior chemotherapy and their cancers did not have to be high for the biomarker to enroll on the study. (Although those with high (>50%) PD-L1 levels tended to survive longer – a median 20.5 months).

Take home point: We expect that Tecentriq will also be approved soon by the FDA for the treatment of lung cancer in patients who have already received chemotherapy. Tecentriq was approved to treat lung cancer on Tuesday, October 18, 2016. 

There is an additional important point to note across all of these studies that underscores the importance of biomarker testing. In the trials for all three drugs, patients who had an EGFR mutation showed less benefit from the immunotherapies. This indicates that patients with EGRF, ALK or ROS mutations should likely be given a targeted therapy and not an immunotherapy first-line. We encourage patients with non-small cell lung cancer to have biomarker testing and to discuss all options with their treatment team.

All in all, while there is still a lot of research to be done, this is an exciting time for lung cancer research as new therapies and new combinations continue to show promise for lung cancer patients.

For questions about your treatment options or lung cancer in general, please call our HelpLine at 1-800-298-2436 or email



Dream Bigger than Your Fear


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.


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


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.


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

So Much to Live For


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


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  

Riding for a Cure


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.


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