As We Get Smarter, So Do Clinical Trials

Jennifer King, Lung Cancer Alliance Director of Research and Science

Jennifer King, Lung Cancer Alliance Director of Research and Science

By Jennifer King, Lung Cancer Alliance Director of Science and Research

The information we have today about lung cancer – about diagnosis, staging, treatment and survivorship – is because we learned from the journeys of patients before you.  As a patient, an important way that you can be involved in research is to join a clinical trial. It may not just help you but could help others in the future, as well.

Today, I want to explain how clinical trials have been changing to help even more people. Now that we understand cancer better, researchers can use this knowledge to design smarter clinical trials that benefit more people and reach answers more quickly.  One type of new design is called an “umbrella” trial, because the trial covers multiple smaller trials underneath it (think of the smaller sub-studies as the spokes of the umbrella).  Patients with one specific type of disease enroll on the trial, but they are then assigned to one of several smaller studies (sub-studies) under the umbrella that is most appropriate for them.

A good example is the Lung-MAP trial for advanced squamous cell carcinoma, a type of non-small cell lung cancer.  If you have advanced squamous cell carcinoma, you may be able to join this trial, which will check your tumor tissue for certain gene changes that may be helping your cancer to grow and spread.  Depending on your personal results, you get assigned to the sub-study that is most likely to benefit you.  This is a win-win. You have a better chance of responding to the new drug being tested and researchers get more people with the exact tumor characteristics that they are looking for to enroll in each part of the trial.

The researchers running the trial are also able to change the sub-studies over time as we continue to learn more about treating cancer.  I was able to attend the Lung-MAP investigators meeting in June where they were discussing changes to the sub-studies now that Opdivo has been approved.  It was very clear how passionate the group was about making sure the research being done was best for the patients.  (An example discussion point: “Would patients want to go on the trial first or try Opdivo first?”)

Another important umbrella trial in lung cancer to consider is the ALCHEMIST trial for early stage lung cancer that can be treated by surgery.  Similar to LungMAP, there is genetic testing of the tumor. Those with certain changes to the EGFR or ALK genes will receive adjuvant (additional) therapy with drugs targeting these changes to see if these drugs will help keep the cancer from coming back.

Along with these newer umbrella trials that are specific to one cancer, there are also “basket” (also called “bucket”) trials that enroll patients with multiple cancer types. Basket/bucket trials enroll patients from many different cancers but then put them in “baskets” (sub-studies) based on the molecular profile of the tumor, not the type of cancer.  This goes hand in hand with the new, hot topic of precision medicine.

NCI-MATCH is a new basket trial from the National Institutes of Health that is now open across the country, assigning patients to drugs based on DNA sequencing of their tumor.  The American Society of Clinical Oncology is also starting a new clinical study called TAPUR later this year which allows patients to take drugs “off-label” (ie, a patient with lung cancer could take a drug approved for leukemia or melanoma) if the cancer has the type of  genetic change that the drug targets.  In both cases, it’s these precise changes in your cancer, not where it is located that determines the best trial therapy.

The key takeaway is that trial design is changing, for the better.  I was just talking with a pharmaceutical company executive in charge of a clinical trial program about how earlier in his career, a Phase I clinical trial was only to show if a drug was safe (not whether it worked).  Now they expect drugs to be truly helping people even in these early phases, because they are given to the right group of patients.

When evaluating your options for yourself or your loved ones, consider clinical trials and discuss them with your healthcare team.  You may be able to pay it forward and help us learn how to better treat lung cancer for everyone, including yourself. If you need help finding a trial, we have a Lung Cancer Clinical Trial Matching service that can be accessed online or through a phone navigator at 1-800-698-0931.

The following are great resources on the basics of clinical trials and why they are important, including LCA’s Understanding Clinical Trials brochure, the National Cancer Institute website and Cancer.Net’s PRE-ACT video series.

A Permanent Mark of Survivorship

By Francis Spruit, Lung Cancer Alliance Chapter Co-Director, lung cancer survivor

Francis and Roslyn

Francis and Roslyn Spruit at Senator Feinstein’s office during the 2015 National Lung Cancer Summit.

Francis Spruit was diagnosed with lung cancer in 2007 at the age of 48. After the shock of the news, he decided he was not only going to fight the disease, but take on the cause for all those impacted by lung cancer. Francis and his wife, Roslyn, became eager volunteers at Lung Cancer Alliance, taking on the role as Chapter Co-Directors in Northern California and hosting events, recruiting other volunteers and working with policy makers in California and Washington, DC. We sat down with Francis to find out how becoming a survivor has changed his life, for the better.

What is the best part about being a lung cancer survivor?

Living. Somehow my perspective on life became broader in some areas, also more intense and richer. The cancer survivorship journey is (hopefully) long, and at times very challenging. It has taken me to my physical as well as emotional limits. I have experienced fear and uncertainty but also joy and acceptance. It made me realize that you do not survive on your own; I am a survivor because I have a life partner who understands the concepts of living, healing, love and giving.

What would you tell someone newly diagnosed?

Learn about lung cancer. Join Lung Cancer Alliance. Talk to people who have gone through the cancer journey. Lung cancer is a challenging disease but it will bring new people into your life that will make your life richer.

Francis_Tattoo_2

Francis’ tattoo honoring seven years of survivorship.

Why did you get a tattoo of LCA’s lungs?

I wanted to get a tattoo to express my gratitude for surviving lung cancer. I’ve been playing around with the tattoo idea since after my surgery in 2007. Last month when we were in Vegas I decided that the LCA logo would look really cool on my arm. As my wife, Roslyn, puts it “what happens in Vegas comes home with you on your arm.” Thus far I have only had a few people ask me about it, one person actually thought they were angels’ wings. When people ask, I will be very happy to explain and share our story of pain, nausea, physical and emotional stress all the way to surviving and thriving. I’m a very lucky guy in more ways than one.

Why did you decide to get involved in advocacy?

I wanted to contribute to the lung cancer cause. When I joined LCA in 2009 I learned that creating awareness with our representatives on Capitol Hill is of critical importance. Helping them realize that lung cancer deserves a much higher priority when it comes to research funding, allocating key resources and developing policies and legislation. I am able to not only contribute my knowledge of lung cancer statistics, but also provide personal context from my own lung cancer journey. It’s an effective combination!

What is your favorite thing about being a lung cancer advocate?

I really like to share my story and see the look of surprise in people’s eyes, and then turn that surprise into empathy and support, or at least understanding. Multiply that by the number of times we get to share our journey and you get a strong sense that we are and will save many lives!

Click here to learn more about becoming a lung cancer advocate and getting involved in the movement!

 

 

Celebrating My Second Independence Day Free of Cancer!

By Jack Martins, US Marine Corp Veteran and lung cancer survivor

Jack

Jack Martins

As the nation prepares to celebrate its 239th birthday, this Marine Corp vet is preparing for a celebration of his own.

Slightly less than two years ago, in November 2013, my wife watched a Health Watch news segment that highlighted the free low dose CT scans being offered to veterans, in honor of Veterans Day, at a nearby hospital, Middlesex Cancer Center in Middletown CT.  Veterans have a higher incidence rate of lung cancer than the general population.

Since I had smoked up to four packs a day for over 50 years she was concerned about the possibility that I might have lung cancer, so she recorded the segment and asked me to watch it.  After learning the risk factors, I realized I would be crazy not to take advantage of this offer.

When I arrived at the cancer center I was greeted by the Nurse Navigator, Gean Brown, and Dr. Raymond Schoomaker, two of the most caring people you could ever meet. After filling out a brief questionnaire, Dr. Schoomaker informed me that I was a prime candidate for a low dose CT scan. After the scan, a quick and easy process, I was told they would be in touch that week with the results.

Two days later I got the phone call no one wants to receive – they had found something on my right lung that didn’t look right. After meeting with a Pulmonologist and getting a Pet CAT Scan to assist in determining the problem, we found out it was cancer.

Jack, his wife Marianne, son, Brian, and daughter, Patty.

Jack, his wife Marianne, son, Brian, and daughter, Patty.

Hearing this news was shocking, but I powered through the process to learn more about how I could fight this. I was put in touch with Dr. John Frederico, , who brought a sense of relief when he told me he was confident he could remove the cancer completely through surgery and have me home the next day.  He proved to be a man of his word! Since January 7, 2014, I have had two additional scans which showed no additional problems!

So as the nation celebrates its independence I am celebrating my second Independence Day free of cancer.

My closing thoughts for anyone reading this is, if you are worried about the possibility of having lung cancer, have a low dose CT scan performed. Even if cancer is found, if you are as lucky as I was, it will be Stage 1A cancer which is easily treatable. If the cancer is more advanced, early treatment can save your life.

Happy July 4th!!!

Visit AtRiskForLungCancer.org to find out if you are at risk for lung cancer. If you are interested in getting a CT scan, click here to find a Screening Center of Excellence near you. For any further questions, please call our HelpLine at 1-800-298-2436 or email support@lungcanceralliance.org.

What Men Need to Know About Lung Cancer

By Keith D. Mortman, M.D., F.A.C.S., F.C.C.P., Associate Professor of Surgery at The George Washington University School of Medicine & Health Sciences and Director, Thoracic Surgery at The George Washington University Hospital

Dr. Keith Mortman

Dr. Keith Mortman

This year, 221,200 people in the United States will be told “You have lung cancer.”  Slightly more than half of these people (roughly 115,000) will be men.  1 out of 13 men will be diagnosed with lung cancer during his lifetime.

The key to a favorable outcome is early diagnosis.  The 5-year survival rate (the percentage of patients alive 5 years after diagnosis) for stage 1A non-small cell lung cancer (the earliest stage of the most common form of lung cancer) is approximately 85-90% for those having surgery at experienced centers.  Understanding your risk factors and discussing these with your physician may lead to an early diagnosis or give you peace of mind that you are lung cancer free.

Risk factors for lung cancer:

  • Current or former cigarette smoker
  • Secondhand exposure to tobacco
  • Occupational exposure (metal workers, painters, cleaners, plumbers and pipe fitters, welders, construction workers)
  • Radon exposure
  • Prior radiation
  • Family history of lung cancer

A study published in 2011 in the New England Journal of Medicine (the National Lung Screening Trial) found that there was a 20% reduction in lung cancer deaths when patients were screened with a low-dose CT scan (compared to a plain chest x-ray).  Since this was a screening examination, it means that patients had no signs or symptoms of lung cancer—they simply had known risk factors.

In addition to being aware of your risk for lung cancer, you should also contact your physician if you exhibit any of the common lung cancer symptoms below.

  • A new, unremitting cough (or a change in a chronic cough)
  • Coughing up blood (hemoptysis)
  • Shortness of breath (dyspnea)
  • New chest pain
  • Recurrent pneumonias
  • Unexplained weight loss
  • Fatigue

Click here to find out if you are at risk for lung cancer. If you would like to talk with someone on the phone, call our HelpLine at 1-800-298-2436. Or meet with a Healthcare Professional in-person at a national Screening Centers of Excellence to find out if a low-dose screening CT scan is right for you.

If you have recently been diagnosed with lung cancer, you have options. Not all treatments are right for every person but learning about the possibilities can help you have an informed discussion with your doctor. Click here to learn about treatment options.

 

 

 

 

 

 

 

Your Children Are Eternity

By Jim Pantelas

Jim, his wife and his three daughters at a butterfly exhibit.

Jim, his wife and his three daughters at a butterfly exhibit.

When I was 26 years old my father died as the result of lung cancer. His case was so advanced that he died 7 days after his actual diagnosis. Fast-forward several years later to my own diagnosis and so much had changed, but all too much seemed the same.

The day I was diagnosed with lung cancer my wife Cathy was 6 months pregnant. We had the PET and CAT scans, knew the size of the tumor and we were assured that we were dealing with an early stage cancer, and that I could have a very good outcome. I went into the operating room with a Stage 1B cancer only to come out of that room minus 75% of my right lung and staged at 3B with stage 4 lymph node involvement.

With the change in the understanding of how my cancer had spread came the need to re-think how aggressive we might want to be in my post-operative treatments. I was offered, and I accepted a trial treatment regimen that included daily radiation and weekly chemo treatments. Four weeks after my surgery those treatments began, and they continued over the next several months. But it wasn’t those treatments that filled our world.

In the weeks between my operation and my daughter’s birth all of the “deals” we made were that I be allowed to live long enough to see her born. And life remained fairly hectic. Cathy’s baby shower went off while I was confined to my recliner, and while I couldn’t climb the stairs or help, family members came over and finished the nursery, friends took care of the yard work, and neighbors dropped off food.

Three weeks after starting my post-operative therapies, and on a day in which small mountains were moved to allow me to have my chemo treatment early, my wife gave birth to our daughter Stella and she was so very beautiful!

An old adage says that your last death happens when your name is spoken for the last time. For me Stella’s birth in some weird way made my physical death more palatable. She was here, and she would be able to live on when I could not. So I wrote her notes – things I’d want her to get on birthdays, Valentines or Christmas, and I reached out to friends to welcome them to share stories with her if I could not.

At 21 days old Stella had a brain bleed. She was in the NICU at Mott Children’s Hospital for over 30 days. We spent my birthday, Christmas and New Years there. Every day I would leave Mott to go to my radiation or chemo treatments at the hospital across town, but a piece of me never left. And we stopped thinking about my cancer. All of our thoughts, hopes and prayers were for Stella.

Stella’s brain bleed caused what her neurologist called “a significant injury.” And my cancer went into an NED state. I found myself thankful for some of the gifts my lung cancer had given me. I was unable to work, so I could spend all day, every day with Stella. I hadn’t died the way my father had – my cancer had given me the time to get my affairs in order, and given Stella’s injury and subsequent disabilities getting those things done was and remains vital. And I was there with my wife so we could go through this together. None of that would have been possible if I’d died in a bus accident, in a fall in the bathtub, or if I’d been taken by a heart attack. And, most of all, I’d have never known the pure joy of being Stella’s dad.

So as we come up on Father’s Day I think of my dad, but mostly I think about the gift of being able to be a dad. Stella is now 9 years old, and she has two glorious, bright, and very funny younger sisters, Grace, 7 and Leda 5, and I’m grateful for every extra day I’ve been given to be their dad, Cathy’s husband and, I hope, a better man.

Your Cancer, Your Treatment

By Jennifer King, Director of Science and Research at Lung Cancer Alliance

"General Views"

“Illumination and Innovation” Presentation at ASCO

Last week, I blogged about some of the research presented at the 2015 ASCO Meeting – particularly the promise of immuno-oncology.  Today, I’m going to focus on another topic that is a very hot right now: precision medicine.  President Obama announced a new Precision Medicine Initiative during the state of the union address. The government is defining precision medicine as “an emerging approach for disease prevention and treatment that takes into account people’s individual variations in genes, environment, and lifestyle.”

Precision medicine, formerly called personalized medicine, is exploding in lung cancer as well as many other cancers. There are countless targeted therapies, drugs that work on specific genetic variations (changes/mutations), in company drug pipelines.  For most clinical trials of these drugs, you are first tested to see if your tumor has the right biomarker (the variation) – before you can go on the drug.

Many new advances in targeted therapies were presented last week at the ASCO meeting. Note that in all of the studies referenced below, the patients had advanced/metastatic lung cancer.

There are already multiple drugs available for treating lung cancer with EGFR and ALK changes, but many people develop resistance to these therapies. This resistance is typically because the tumor develops another variation/mutation that prevents the drug from working. Drugs are now being developed to target these resistance mutations.

Data on some new EGFR targeted therapies were presented at the meeting.  Rociletinib worked in close to half of the patients who had a known EGFR resistance mutation.  Notably, this was true whether the EGFR test was done from a regular tissue biopsy or from a “liquid biopsy” (a blood test). AZD9291 had good results in an early trial as a first-line EGFR inhibitor and a Phase III trial comparing it to first-line Tarceva or Iressa (gefitinib) is now underway.

ASCO2_2

Poster Presentations at ASCO

For patients with ALK changes in their lung cancers, there are also new drugs in development. Data was presented on alectinib showing that roughly half of patients who were already resistant to crizotinib responded to alectinib (and if you include those who had ‘stable’ tumors that were not growing, it was ~80% of patients who benefitted from the drug).

Importantly, more than half the patients in the trial had lung cancer that had metastasized to the brain and the drug also worked on many of the tumors in the brain.  A Phase III trial is now ongoing comparing alectinib to crizotinib, as well as an expanded access study for patients whose cancer is resistant to crizotinib. Another new ALK inhibitor, brigatinib, that may also work on brain metastases is in a Phase II clinical trial.

Increasingly, targeted therapies are being used for a much smaller population of patients. There are many gene changes that are only present in less than 5% of lung cancer patients, but drugs may still be quite effective for the patients that do have these changes.  Some examples that had promising results presented at the meeting were a combination of Tafinlar (dabrafenib) and Mekinist (trametinib) for patients with mutations in a gene called BRAF (common in melanoma) and Cometriq (cabozantinib) for patients with changes in RET, and likely  also MET and ROS1.

The important things to remember here are not the specific drugs names and studies.  There are a few key take-aways:

  • Every lung cancer is different and treatment decisions need to be made precisely for you, your cancer and your lifestyle and values
  • There are many new drugs coming soon and they each will likely only work for a small percentage of people. It is more important than ever to have conversations with your care team about what the options are and what tests are needed to determine the best treatment path for you.

Also, I want to point out that none of this important research could have been done without patients enrolling on clinical trials.  Clinical trials are very important and definitely a path to consider.  My next blog will be about some of the new trials out there and how clinical trials are now being designed in smarter, more effective ways.

Lung Cancer Takes the Big Stage

By Jennifer King, Director of Science and Research at Lung Cancer Alliance

You may have seen news headlines about cancer advances last weekend. This is because it was the annual meeting of the American Society of Clinical Oncology (ASCO, a membership society for health professionals working in cancer) — a meeting of ~37,000 people that is known to be one of the best places to release high impact research results.

Some of our staff, including me, spent a few very busy days there and I’m thrilled to say that there is a lot to report. So much that I’m not sure how to fit it all into this blog – which is a great problem to have.

The Big Picture

First of all, the most important thing to say is that ASCO brought a lot of hope for those living with or at risk for lung cancer. Between the approval of screening coverage earlier this year and all the new drugs coming out, the terrible five year survival statistics for lung cancer will be changing.

At the meeting, I spoke to an oncologist who told me that in his rural community, 40% of patients who are diagnosed never go see their oncologist because they think a lung cancer diagnosis is a death sentence.  We have to change this attitude.  If people understood the dedication of health professionals to improving the lives of those with lung cancer and the pace of the research, everyone would see an oncologist to discuss their options.

Research  just about lung cancer was so impactful that the presentations were in the big rooms that seat ~5000 people

ASCO 1

Lung Cancer Session on Sunday at ASCO (Photo Credit: OncLive)

Even if you don’t want to read the scientific re-cap, here’s the big take-home points:

  1. There will be multiple more drug approvals in lung cancer by the end of the year
  2. Don’t give up hope
  3. Go talk to your doctor(s) regularly about your options if you are diagnosed or at risk for lung cancer

If you want more details on the science presented at the meeting, keep reading…

Immuno-Oncology

2015 seemed to be the year of Immuno-Oncology at ASCO.  Immuno-Oncology is using therapies that activate your own immune system to fight your cancer.  Although there are many types of immunotherapies, the kind making the most news right now are drugs that block two “checkpoints” called CTLA-4 and PD-1.

After I wrote my Opdivo (nivolumab) blog in March, a number of you asked me if it would work in non-squamous NSCLC.  At the time I didn’t have an answer, but I do now. Sure enough, a large research study shows a significant survival advantage of Opdivo (compared to Taxotere chemotherapy) in advanced non-squamous NSCLC and generally with fewer side effects.

ASCO 2

This made the front page of the meeting’s newspaper.

The key phrase at ASCO is always “practice-changing.”  A research study is practice-changing if it means that a doctor will actually change what he or she does or prescribes based on this new data.  This is what clinical researchers aspire to…making a difference in the care of patients.  This result was considered practice-changing and I’m sure we will be seeing Opdivo approved by the FDA for advanced, non-squamous NSCLC soon.

As mentioned in the Hot Topics on our website recently, there is also a competitor drug, Keytruda (pembrolizumab), that also targets PD-1 and is likely to receive FDA approval this year too. Notably, early data on both Opdivo and Keytruda in extensive small cell lung cancer was also presented. Both of the studies had promising results that indicated that some of the patients were having very favorable responses.  More research needs to be done in small cell, but this early data indicates that immuno-oncology drugs may eventually also be used in this type of lung cancer that has few options.

The data on immunotherapy in lung cancer look very promising, but there were also many questions raised.  In some studies, patients with higher levels of a protein called PD-L1 (which interacts with PD-1) were more likely to respond to these drugs. But this wasn’t true in all cases and it wasn’t clear how much PD-L1 needed to be present to make you more likely to respond.  There was also data presented  that suggested that the more DNA changes (mutations) you have in your tumor, the more likely you are to respond on a PD-1 drug.  This implies that former smokers might be more likely to respond to these drugs, but the data is not clear and some non-smokers do respond.

There is also an entire pipeline of additional drugs in this space that we will see over the next few years. This includes a PD-L1 inhibitor, atezolizumab (formerly MPDL3280A) which has already been designated a breakthrough therapy by the FDA.  Promising data was presented at the meeting on this agent too and there is a large clinical trial underway.

One very important advance across oncology was the presentation of combinations of immunotherapies.  There was huge news in melanoma that Opdivo was significantly better than Yervoy (ipilumumab), the CTLA-4 drug that was the original poster child for cancer immunotherapy. In this study, if patients did not have high levels of the PD-L1 protein, treatment with the combination of both Opdivo and Yervoy was even better than either drug alone.

This positive effect with combinations is likely to be true in lung cancer as well and there was early data presented that the Opdivo and Yervoy given together could be better in small cell (but needs more testing) as well as research on a very small number of patients with advanced NSCLC on both Keytruda and Yervoy, that showed disease control (no progression) in ~80% of patients.   So there is a lot of excitement for the future about combinations of immunotherapies along with combinations of immunotherapy and other types of agents.

All in all, there’s a huge buzz about immuno-oncology and we will see a lot more about these types of therapies in the coming year;  however,  there are still a number of questions to answer about how to use the drugs for the best patient results at the most reasonable cost.

Of note, pharmaceutical companies know this topic is confusing and are trying their best to educate patients and caregivers. Check out Bristol-Myers Squibb’s I-O page (where you can also raise a flag to honor someone  and support LCA) and this variation of “Angry Birds” from Genentech (that the science geek in me loves), where monoclonal antibodies slingshot to find the cancer cells that are “hiding” from the T-cells.

Check back next week for more data from the meeting on targeted therapies.

Going Above and Beyond

Lynn Cole

Lynn Cole, RN, BSN, OCN, Thoracic Navigator at Gibbs Cancer Center & Research Institute

We are thrilled to announce that Lynn Cole, RN, BSN, OCN, Thoracic Navigator at Gibbs Cancer Center & Research Institute, a Lung Cancer Alliance Screening Center of Excellence, was awarded the 2015 Oncology Certified Nurse of the Year! Not only is this a testament to the hard work Lynn and her screening center are doing, but also to the advancements and achievements we have accomplished as a community. Lynn facilitated and manages a program to provide lung cancer screening to those at high risk. Through her efforts, 91 patients have received screening.

We sat down with Lynn to learn a little more about her work.

What do you do as the Thoracic Navigator at Gibbs Cancer Center & Research Institute?

As a navigator I help with educating the patients and their families on any testing/procedures they may undergo and the process of navigating the medical system. I make sure they know the importance of national guidelines and how they relate to their disease. I strive to decrease time from diagnosis to treatment.

My mission revolves around awareness, education and removal of barriers. I strive to assure that each patient and family understands the process of diagnosing their cancer. When patients and families understand the process they become empowered to make informed decisions about their care.  I try to be their biggest advocate for whatever decision they make; therapy or comfort care. Sometimes, I am just a shoulder to lean on or an ear to vent to.

Why do you do what you do?

I was inspired to become an oncology nurse by the nurses who took care of both my grandfathers as they underwent therapy for cancer. Those nurses do not know how much of an impact they had on me. They were compassionate to my grandfathers and to all the family.

 

What does receiving the award mean to you?

Receiving that award has meant a great deal to me. I still have a hard time believing that I won. Without the support of the leadership and my co-workers at Gibbs Cancer Center, I would not have won the award. They make my job possible. I really don’t believe that what I do is very special; it is what a good oncology nurse should do; educate, support and advocate.  I believe that oncology nurses are called to our work; it’s not a job, it’s who we are. It’s who I am.   I am a nurse 24/7/365. Just because I leave work, doesn’t mean I stop thinking about my patients.

 

To learn more about Lynn and her amazing work click here!

 

To learn more about your risk and whether screening is right for you or a loved one go here: www.atriskforlungcancer.org

Becoming a Survivor

By Tonie Forster, 23 lung cancer survivor

Tonie Forster, 23 year lung cancer survivor

Tonie Forster, 23 year lung cancer survivor

I was 38 years old at the time of my diagnosis of small cell lung cancer in 1992.  At the time I considered this to be my worst nightmare, come true. Always knowing the risks I was taking and fearing this eventual outcome.

Initially the diagnosis was overwhelming for me and my family. We all experienced complicated emotions such as anger, guilt and shame. For me, guilt was the most powerful piece to this experience of suffering.

The word survivorship has special meaning for each of us contending with this diagnosis.  For me, survivorship opened the doors of change and the healing of myself, not just my lungs.  It allowed me to rekindle my lost spirituality, my compassion and empathy towards others.

I reclaimed past interests such as furthering my education.  I allowed myself finally, to be supported by those who loved me and those whom I loved.  In that way, the path to forgiveness opened for different situations and relationships.  I developed courage and learned how to let go.  Then I finally got it…nobody lives forever. Now is the time for all of it.

Throughout, whether I was going to die shortly or be around for a bit, my beautiful husband, parents, sister and friends supported me throughout the journey that I am still engaged in.  My husband tolerates with infinite patience still, my anxiety when I am up for a revisit to a follow up CT scan.  I recall too with great warmth and love, my Italian parents bringing lunch for me while I was sitting in five hour chemo runs, my sister joining for wig try-ons with my young nephew on her lap and my friends pulling me out of my bed to learn how to play Mah Jong.

My community all became survivors with me.  In the end survivorship is about healing within a community and the Lung Cancer Alliance allows for that to happen for all of us.  I am glad to be part of this process.

The Creation of Lung Cancer Alliance 20 Years Ago

By Peggy McCarthy

Peggy poses center with ALCASE co-directors Nadine Jelsing (left) and Betty Layne (right)

Peggy poses center with ALCASE co-directors Nadine Jelsing (left) and Betty Layne (right)

My name is Peggy McCarthy and I founded ALCASE, the Alliance for Lung Cancer Advocacy, Support and Education, now Lung Cancer Alliance, in 1995. My inspiration for doing so was a passionate advocate and dear friend who dedicated his life to fight lung cancer.

In the late 1990’s, McCarthy Medical Marketing (MMM), the organization I started in 1987 to design research-based educational programs which helped improve the healthcare system,  became aware of a great gap in knowledge, effective diagnostic procedures, availability of treatment and advocacy for people living with lung cancer.

At that time most people lived less than a year after diagnosis that was most often made when the person was in stage IV. MMM had suggested and then been contracted to create the first ever resource manual for people living with cancer. We were distributing it to all healthcare providers involved with diagnosing and treating cancer throughout the U.S.

In our research, which then involved thousands of phone calls, numerous trips to libraries, hospitals, and oncology centers, we could not find anything about lung cancer. No one seemed to care about this cancer that was frequently blamed on the person diagnosed with it; after all, s/he “caused it” by smoking. Lung cancer, then as now, had the highest death rates of any cancer.

We found one gentleman living in Chicago who seemed to care. Mort Liebling was a 78 year old lung cancer survivor when I called him for the first time and asked him to help with the guide. Mort would bring his business cards to his oncology office and suggested that the staff give them to people diagnosed with lung cancer if they wanted to talk to a 13 year survivor.

Within the year after the guide was published and hundreds of copies distributed to healthcare professionals in all fifty states and Washington DC, Mort was getting calls from people across the nation. During that year Mort and I became telephone buddies, as well. When we finally met, Mort asked me if, after he passed away, I would take over his role as an advocate for those living with lung cancer.

I agreed and, a few days later, returned to my office, sat down with our staff and we brainstormed. The result was to establish the Alliance for Lung Cancer Advocacy, Support and Education (ALCASE) the predecessor of the Lung Cancer Alliance in Vancouver, WA. The name was strategic because we wanted this organization to come up first in any list of cancer advocacy organizations, especially those that played any role in lung cancer.

Our first tasks were to recruit a board of directors, create a website, a newsletter and establish a telephone line where people wanting information about lung cancer could speak to an advocate.

The initial issues we tackled included:

  • Raising awareness about lung cancer, including who was and is affected
  • Raising awareness about the effect of lung cancer on the lives of women
  • Increasing treatment options for people with lung cancer
  • Finding and implementing the best early detection methods possible for those at risk

I visited Mort at his nursing home just days before his death; this was the second time I had seen him, in person, although by this time I knew Mort better than I knew many of my own relatives because he and I spent lots of time talking on the phone. I let him know that ALCASE was up and running well and would continue strongly after his death. His work would not be forgotten.

In 2002 we determined the time had come to move the organization from the West Coast to Washington DC. This had been our goal since founding ALCASE. Along with the move came the shortening of the name to Lung Cancer Alliance.

The ability to make this move was facilitated in large part by help from Sheila Ross who contacted me and began to work closely with ALCASE after her two sequential diagnoses of lung cancer. Sheila had been a Congressional staff person, holding a variety of positions for both parties in the Senate and the House. Her knowledge of the workings of Washington DC enabled this move to be smooth and leave the organization in secure hands. Everyone living with lung cancer is deeply indebted to this amazing survivor.

Sitting with Mort in the nursing home that day, I could never have imagined the accomplishments that have been achieved, the people we have helped and the lives we have saved. I am immensely proud to be part of such an incredible community and movement.