We sat down with the LCA staffers to find out what they are thankful for this year. Here’s what they said!
By Tammy Stansbery
“There is no greater love than to lay down one’s life for one’s friends.” John 15:13
My journey with lung cancer officially began in April of 2011 but I believe on July 30th, 2010 is when it all started. On that dark day my first-born child, Michael, who was just a few weeks into his second deployment with the U.S. Army, was killed in Afghanistan serving his country.
As early as kindergarten, it was apparent that Michael wanted to be a soldier. He always knew what he wanted and went after his dreams. He was so full of love and light; always smiling. He was one of those people you just wanted to be around. He was honest and reliable; would do anything for the people he loved.
After Michael’s death, I found myself in a state of deep grief; I walked through daily life in a haze. I was run down and sick all the time. When I went to the doctor, they diagnosed me with “grief” and sent me home.
After a trip to Arlington National Cemetery to visit Michael, I found myself with an ear infection and the right side of my neck was swollen, so back to the doctors I went. I was sent for an x-ray to be tested for walking pneumonia. Little did we know another storm was coming; stage IV lung cancer, non -small cell adenocarcinoma. I have never smoked a day in all my 45 years.
It has not been an easy road but I have so many things to live for and celebrate. My daughter, Michelle, just recently graduated college, got married and became a nurse! I have a husband of 28 years that loves me in health and sickness. Amazing friends and family who fight for me when I am too weak to fight for myself. Even though Michael is not physically here, he plays a large part in my life. It is because of Michael’s courage and heroism that I know I can fight this battle. I miss him more than words could adequately express but I know that I have to live for him.
Some days I just want to be with him. Be in his presence. Hear his honesty. His laugh. I feel as though people believe that just because he is not here, he is not a part of our lives. Michael is still very much a part of our family. We still talk about him and celebrate him every day. The incredible courage and strength he demonstrated on a daily basis, on and off the battle field, give me the push I need to keep going. I can still hear him saying “just walk” and “you can do it.” With that he is just as much a part of this journey as anyone else.
Today on Veteran’s Day, a day that has always been very special to me, we celebrate Michael and all those who have fought for our country. I am blessed with 21 years of being Michael’s mom. I am so proud to say my son is in Arlington National Cemetery; that he is an American hero. Today we are wearing our “Michael shirts” and telling our favorite Michael stories, as we do every year on Veteran’s Day.
If Michael could fight for us, for his country, for himself; I will fight for him, my family, friends and myself.
By Darcy Miller
My dad, Rich, was diagnosed with stage 4 lung cancer in the summer of 2013. When diagnosed it had already metastasized to his brain and bones. After starting Tarceva and receiving radiation, the cancer began to stabilize and the large tumors reduced. The Tarceva stopped working after a year and other options were explored. It took a while to find the next treatment that would keep the cancer growth at bay. It took a heavy toll on my dad’s health and the family’s spirit. Thankfully, he is now on Tagrisso and is doing well.
My dad was in the Navy from 1965-1969. He served in the Vietnam War and was assigned to the USS Hancock, an air-craft carrier. He was specially trained as a dental assistant and was stationed shore side with the 3rd Marine Division in Vietnam for a year. He was in northern South Vietnam for six months, and then traveled to remote clinics throughout Vietnam.
Although we don’t know the specific origin of the cancer, the most obvious answer is Agent Orange. The Veterans Administration agrees and has been very supportive of his care. I know this is only due to the hard work of other Veterans who have fought to get benefits supporting the long term effects of Agent Orange. I remember my dad commenting after he had been diagnosed that there were planes often flying near the base and it was assumed at the time they were crop-dusting. Now, we know 1967-1969 were the peak years chemicals were used in Vietnam.
I cried a lot when my dad was diagnosed. I have a very difficult time discussing it still without crying. I can’t imagine my life without being able to pick up the phone and call my dad any time I need his advice or just want to talk. I’ve relied heavily on guidance from my dad in my career and I have tried to take advantage of his wisdom as much as possible. I try to be available to encourage, listen and support both him and my stepmother.
Routine scans are laced with anxiety. Daily life is modified dramatically and roles change. Everyone struggles to fit themselves into an unwanted position, however, we are a faith-filled family and our trust and reliance on God is what carries us each and every day.
This journey has taught us all to appreciate each other more. We are more intentional with spending the holidays together. We see the importance of time and family in a wider frame of reference. My dad has been able to create some amazing memories with his grandkids. I hope he’s around to be a part of our lives to experience so much more. His faith has grown and our bond and love as a family has only strengthened. I don’t like the phrase, “living on borrowed time” so I say that we have been fortunate to steal 3 ½ years from this disease.
I’m so proud of the strength my dad has found in himself, and his perseverance in fighting to stay with us for as long as possible. We are a Navy family and proud of it so, Go Navy!
By Elridge Proctor, Director of Policy, Lung Cancer Alliance
My name is Elridge Proctor and I so am excited to introduce myself to you! I am LCA’s new Director of Health Policy. Before joining the team back in September, I spent 11 years working for the Tourette Association as its Vice President of Public Policy.
Throughout those years I worked hard to raise awareness and engage our Members of Congress on disability issues. I understand the reasons that prevent individuals from being heard and have devised strategies to shape public policy to better support those with disabilities. I am looking forward to applying these skills next to the needs of the lung cancer community.
Right now, we have the opportunity to build on what you started this past spring, during LCA’s National Lung Cancer Summit, when we witnessed the introduction of the bi-partisan (supported by both Democrats and Republicans) and bi-cameral (introduced in both the House of Representatives and the Senate) legislative bill, the Women and Lung Cancer Research and Preventive Services Act of 2016.
This legislation awaits action by the US Senate and House of Representatives. That means it could be passed as a bill on its own or it could be added as an amendment to legislation that is “moving” or has traction to pass this year. The 21st Century Cures Act is an example.
Given the unique impact lung cancer has on women – particularly non-smoking women, it is important that we have a clearer understanding of existing research and knowledge gaps to guide our approach to better addressing the leading cause of cancer death.
During the “lame duck” session of Congress that falls during Lung Cancer Awareness Month and part of December, we have the chance to raise the issue of lung cancer and advocate for improved research and screening strategies that will impact both women and men.
We urge you to contact your Members of Congress by the middle of December to share your story and ask them to pass S.2941 and H.R. 5263, the Women and Lung Cancer Research and Preventive Services Act of 2016.
It only takes two minutes to have your voice heard and make a difference for those impacted by lung cancer!
November is Lung Cancer Awareness Month, an opportunity to join forces as a community and make our voice heard in honor of those fighting the disease and for those we have lost. Here are 5 ways to get involved and raise awareness this November.
1. Host or Attend an Event– With close to 200 lung cancer events taking place across the country, chances are, there is one near you. Find one today! You can also host a Shine A Light Your Way and raise critical funds for lung cancer research. Here’s how to get started!
2. Get Social – Social media, like Facebook, Twitter and Instagram, make it easy to spread the word about lung cancer to your friends and others. Here are a few things to remember while posting:
- Change your profile picture! Visit our Facebook home page on November 1st (and throughout the month) to easily add a lung cancer awareness frame to your profile picture.
- Use #ShareHope in your posts to spread hope to the community through personal stories, news articles and other lung cancer advances.
- Share our powerful lung cancer stats posts, which can be found on our Facebook , Twitter and Instagram pages throughout the month of November. Just click the “share” button at the bottom of the post.
3. Donate! – No time? Not on social media? No problem! One of the easiest ways to join the movement is by donating to the cause. Consider a donation today and make a big difference in the lives of those touched by lung cancer.
4. Contact Congress – Contact your elected officials and ask them for support of the Lung Cancer Research and Preventive Services Act. The more people sending in messages about lung cancer the more likely our nation’s leaders are to do something about it. Contact your Members of Congress today!
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!
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.
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.
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 firstname.lastname@example.org.
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.
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.