Yes, you CAN make a difference in research

Jim and his family.

Jim and his family.

By Jim Pantelas

My wife was six-and-a-half months pregnant on the day I was diagnosed with stage 3B, non-small-cell lung cancer. That was eleven years ago and I’ve been dancing with NED (no evidence of disease) for the past ten years. But dancing doesn’t necessarily mean having fun.

Has my life been impacted by lung cancer? I can’t even begin to list how much everything has changed! Like many, my ability to continue in my career was seriously damaged. It’s not that I couldn’t still do what I used to do. Rather, it was that I couldn’t predict the days that I wouldn’t be able to do anything – and, for a while, those days happened with great frequency.

So what does a workaholic do with his life when he can no longer work? He volunteers! I began volunteering ten years ago – first at the children’s hospital that took care of my daughter, and then, more and more in support of lung cancer funding, legislation and research. And that involvement is now a major part of my life.

To be clear here, I have no formal medical or research training. My background is in building and running IT consulting organizations. When I was technical – a seeming million years ago – I was a computer systems management specialist. I worked with brilliant people, and I had a knack for building strong teams, but I was nowhere close to understanding medical issues, medical research or cancer. But I became a quick learner.

So what does the life of a research and patient advocate look like? Let me show you by giving you an idea of what the month of March looked like for me.

It started with assignments to review multiple research proposals as a peer reviewer for PCORI (Patient Centered Outcomes Research Institute). I represented the non-scientist and patient perspective on an oncology IRB (Institutional Review Board) at the university I volunteer at. I also sat on an IRB for my local Veterans Administration Hospital, and I participated in two IRB meetings for the NCI (National Cancer Institute) where I’m also a regular board member. I followed up on two research efforts that I helped to develop and worked on a draft for a research project I want to pursue. I sat on a Pediatric Ethics Committee (and have for the past 10 years), chaired a Patient Experience Board, was a member of a Cancer Council and participated in a Quality Panel for the hospital where I receive my care. On March 26th, I drove to Washington DC to attend the PCORI review panel meeting and I ended the month reviewing three additional proposals for MICH-R (Michigan Research Institute) which I’ll present and defend in the coming weeks.

This didn’t all happen at once. Ten years ago I started by volunteering to be a patient representative on a Pediatric Ethics Committee. Over the last ten years I’ve just gotten more and more involved.

Why do I do this? Mostly, I’d say it’s because it all matters. Maybe it’s because I’m still alive and this is my way of paying the universe back for allowing me to continue breathing.  But in reality, it’s because I love what I’m doing. The work I do has value to my lung cancer community and it has value to my family.

Today I have three daughters, Stella who is now 11, Grace who is so close to turning 9, and my baby Leda, who is 7. My life is full. My family means the world to me, my work has meaning and my days are filled with laughter as I struggle to get smarter just to keep up with the truly bright people I work with.

And on those days when I don’t feel grateful to be alive or days when the exhaustion is particularly difficult; I’m comforted by knowing that I can still contribute and that my involvement is welcomed by a community that appreciates my perspective.

 Click here to find out how you can make a difference in research! 

 

My Purpose, Our Purpose

Ken and Sheila

Ken and Sheila

By Ken Wheatley

As a caregiver and now widower, lung cancer radically changed the course of my life and my daily existence. I had finally found the most perfect woman. “Soulmate” tends to be an overused word, but in this case it was completely applicable. Having Sheila in my life was like having a constant dose of oxytocin – the love or cuddle hormone. So, when she was diagnosed with stage IV non-small cell lung cancer six months after we got engaged, that was the beginning of the end of my “life.” We got married anyway and Sheila passed away 15 months later.

Ken being honored at the National Advocacy Summit for his volunteer work.

Ken being honored at the National Advocacy Summit for his volunteer work.

I got involved with the Lung Cancer Alliance beginning in 2012 and have attended two National Advocacy Summits in Washington, DC. Attending the Summits provides me with an opportunity to recharge by not only communing with people who have a shared experience – either as a patient or as a caregiver – but to put a necessary “face” to the issue in front of congressional decision makers.  The event offers a platform for those impacted by lung cancer to connect with one another and our country’s key decision makers, offering both physical and emotional benefit to knowing that our presence in DC matters.

I can’t make sense of why Sheila was taken so suddenly from me and all those who love(d) her. Maybe my purpose, our purpose, is to use what talents or abilities we have, however large or small, to affect change through advocacy and being involved in the efforts to eradicate lung cancer, like participating in the Summits. Research and research funding are vital, and there are organizations dedicated to that path. Advocacy, while not as “sexy,” is a critical and necessary component of the battle.

The 2017 National Advocacy Summit will take place in Washington, DC from September 27-28, 2017. For more information, click here!

With Every Breath We Take

Brad and Lana

Brad and Lana

By Brad Thacker

I was blessed with a beautiful, fun and kind sister, Lana. Although she was eight years older, we were very close. We lost my mother to breast cancer when I was in college and Lana took me under her wing and was always there.

In our adult years, although we lived many states apart, I saw Lana often. She would fly into Chicago with friends or my other sister, Susan, to attend and support my theater productions.  For many years, I have been performing and producing musical cabaret and theatrical productions and Lana was always my biggest fan.

In 2014, Lana was diagnosed with lung cancer and fought it with all her strength for two years. I was blessed to be able to care for her the last six months of her life. I moved from my home in Chicago to Denver, where Lana lived, and spent days in and out of the hospital. Chemo, radiation and emergency rooms became the norm. I tried to make every day special for her. Last year, we lost Lana.

Lana

Lana

During the last few months of Lana’s life, my dear friend Nan, an amazing Chicago singer and entertainer, would call to help with advice and emotional support. Nan lost her sister, Gerri, to lung cancer a few years earlier and helped guide me along this very difficult journey.

In honor of Lana and Gerri, Nan and I, along with a couple other talented friends, put our heads together to create a musical cabaret show featuring over 15 of Chicago’s finest singers and entertainers. The show is called “With Every Breath We Take” and will take place on May 7th in Chicago with a portion of proceeds going to Lung Cancer Alliance.

Our hope is to not only remember those we have lost, but also make a difference for those who are impacted by lung cancer right now.

To learn more about Brad’s upcoming event, click here.

It is now easier than ever to create your own lung cancer fundraiser in your community. Click here for details or email events@lungcanceralliance.org to get started!

Survivor Spotlight: Maureen

Maureen with her daughter on her 21st birthday.

Maureen with her daughter on her 21st birthday.

In the early spring of 2011 I was on my first 6-mile outdoor run of the season. My hip was really bothering me. Two weeks later my husband insisted that I go see the orthopedist for my, “sports injury.” After several weeks and an MRI my doctor referred me to an orthopedic oncologist to discuss treatment for the growth in my hip. On June 2, 2011, at the age of 46, I had a hip reconstruction. A long titanium rod with six screws now holds my hip together. My doctor told me it was cancer and that I would probably not live to see my daughter graduate from high school. At the time she was 15 years old and my oldest of three.  My boys were 13 and 11.

Fast forward, it turned out that I had NSCLC with one very small tumor in my upper left lobe. No other cancer was found anywhere with the exception of my hip. I underwent radiation to the hip and my pathology was genetically tested. It found that I have the EGFR mutation. I have been on Tarceva ever since. I underwent a lobectomy later that year. There was one cancerous lymph node adjacent to the tumor so I then underwent four rounds of chemo. All was good following those crazy few months and I continued on the Tarceva.  Then, at exactly four and a half years to the day, a PET scan revealed that I had mets in my brain. I’ve undergone two gamma knife surgeries and am currently back in remission.

I am so thrilled to have such a wonderful team of doctors!  I was not only able to see my daughter graduate high school, but also go through the process of choosing a grad school. She will begin that next chapter in August.  My 13 year old is now 19 and finishing his freshman year in college and my 11 year old is now a high school junior on the college search. Every day is a miracle for which I am so grateful.

The best advise I could give a newly diagnosed patient is don’t despair. Keep a positive attitude for yourself and your family. There are so many new treatment options since I’ve been diagnosed, with more on the horizon.

Click here to read more inspiring survivor stories! 

The State of Lung Cancer Congressional Briefing: What YOU Need to Know

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Last week, we brought government leaders, cancer experts and lung cancer advocates together on Capitol Hill for the “State of Lung Cancer” Congressional Briefing, the first in a series hosted by the Congressional Lung Cancer Caucus and Lung Cancer Alliance. We discussed the current state of lung cancer treatments, research advancements, what is coming down the pipeline and what actions need to happen to bring us closer to a cure.

Thanks to your efforts, we had some of our country’s leading decision makers in the audience listening to a panel discussion between Dr. Julie Brahmer, Director of the Thoracic Oncology Program at the Johns Hopkins Kimmel Cancer Center and co-director of the Upper Aerodigestive Program of the Bloomberg~Kimmel Institute for Cancer Immunotherapy, and Dr. Bill Mayfield, Chief Surgical Officer at WellStar Health System and LCA Medical and Professional Advisory Board (MPAB) member, moderated by our Director of Science and Research, Jennifer King, PhD.

Here is what YOU need to know!

  1. LUNG CANCER SCREENING: We know lung cancer screening using low dose CT really works. It is saving lives by detecting lung cancer at earlier, treatable stages. Screening of certain and former smokers has been shown to reduce lung cancer death by 20%! We hope that with more research, we can determine populations at high risk for lung cancer beyond our current parameters. Lung cancer screening is now a covered benefit for Medicare and most insurance plans for those at high risk, but screening reimbursements are being cut and may create a barrier to access for those who need it most.
  1. IMMUNOTHERAPY: Immunotherapy, a treatment that trains the body’s defense system to fight cancer, is taking how we approach lung cancer to a whole new level. We are starting to see new options, like offering immunotherapy before chemotherapy and at earlier stages, not just late stage. Thanks to advancing research and technology, we are seeing some amazing changes in the treatment of lung cancer.
  1. PERSONALIZATION: One of the most exciting developments in the world of lung cancer is that treatments are becoming more personalized to a patient level, rather than an entire group. Lung cancer is more frequently being treated as a chronic disease by using therapies after surgery to prevent lung cancer from returning. Additionally, we are seeing new tests that make it easier and less invasive to diagnose lung cancer, like blood tests in place of a tissue biopsy.

Click here for a video recap of the briefing!

Interested in making a difference for the lung cancer community through advocacy? Learn more!

Because of YOU, Hope is Unstoppable

Maggie (left) with lung cancer advocates at Lung Love Walk Houston this past November. The next Run/Walk will take place in Philadelphia on April 22!

Maggie (left) with lung cancer advocates at Lung Love Walk Houston this past November. The next Run/Walk will take place in Philadelphia on April 22!

By Maggie Walsh, Events & Volunteers Coordinator

I was first exposed to lung cancer as a little girl, when my Nana was diagnosed with the disease. I’ll never forget sitting in the waiting room with my Nana at radiation appointments, making her breakfast or tucking her into bed at night with a teddy bear. As a seven year old, that felt like the right thing to do. I never would have guessed how cancer would impact my life moving forward.

When I was fourteen years old, my dad, who also happened to be my best friend, was diagnosed with brain cancer. This is when I truly learned how cancer can flip your world upside down. My active, vibrant, 50 year-old father slowly lost all his abilities. He fought cancer with a smile and an incredible sense of humor for close to a year. After my dad’s passing, fighting back against cancer in his memory became my life mission. From fifteen on, my journey began!

I began fundraising for brain cancer research and was overwhelmed by the love and support I received from family, friends and community members I had never even met. I later lead initiatives in my community and during college, focused on raising awareness and funds for cancer research.

Throughout my years of fundraising and in my short career at LCA, the most rewarding part has been the incredible volunteers I’ve had the pleasure of working with. I understand how volunteers are the heart of every successful organization. Volunteers deserve passionate staff who can empower their efforts. Together, what we can achieve as a community is monumental.

I work for the lung cancer survivors who courageously fight, while holding on to optimism and hope. They inspire me and remind me of the progress that is being made each day. I work for the loved ones we have lost to lung cancer too soon. Two of my dear friends had to endure the loss of their mothers to lung cancer during our college years. I cannot stand to see another friend endure this pain.

Working for Lung Cancer Alliance means I have the great honor to collaborate with and support our dedicated volunteers through our programs: Shine a Light, Shine a Light Your Way and Lung Love Run/Walk. I witness the commitment our health care facilities have for their patients and caregivers in organizing Shine a Light events. I see the determination in each individual who plans a creative fundraiser to further this mission through our Shine a Light Your Way program. Finally, I see the hope that is created through our Lung Love Run/Walk events – not solely because of our fundraising efforts, but because of the community that is created when we unite to celebrate those touched by this disease.

If I could only share one thought with the Lung Cancer Alliance community, it would be: thank you. Thank you to all the passionate advocates, volunteers, survivors and caregivers who work tirelessly to bring more light to this disease. I am thankful for all the event volunteers and participants that help to fund our mission and who pour their hearts into ending the stigma associated with lung cancer. While there is still great progress to be made, every action you take makes a difference. Because of you, hope is unstoppable.

Please contact me at mwalsh@lungcanceralliance.org if you’d like to make a difference by being involved with any of the programs above. It would be an honor. Philadelphia, we’ll see you on April 22!

To learn more about our upcoming events and ways to get involved, click here!

More Hope, More Options, More Decisions

close up of doctor and woman meeting at hospital

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

I recently returned from a meeting focused on new targeted therapies and immunotherapies for lung cancer.  It was an unusual conference with many days’ worth of 5 minute talks – each one on a new drug or drug combination that is being tested to treat lung cancer.  It was inspiring and overwhelming at the same time and I think that is probably a perfect reflection of how making lung cancer treatment decisions may be for patients right now.

There is now more hope for people diagnosed with lung cancer than ever before. Before, lung cancer was a not-talked-about disease with few good treatment options, but things have been changing. There are many new therapies and patients are living longer and with a better quality of life. You even see commercials about lung cancer on TV!

Now, if, for example, you are a patient with newly diagnosed lung cancer that has spread outside your lungs, you and your treatment team have many options. The choices depend on a lot of factors about your health, your goals and the specific makeup of your cancer. You could go on traditional chemotherapy, or a targeted therapy that targets your specific tumor or an immunotherapy that helps your body to fight the disease. (Watch a video of me explaining the difference between these  HERE).   Or you could even go on a clinical trial combining more than one of these choices.  How do you know what is best and which choices are options for you?

More than ever you need to have a conversation with your treatment team and ask questions.  Think about what matters most to you and your goals for treatment and be sure to talk with your team about them. Ask why your team is making the recommendations they are?  Notably, all patients should now be receiving molecular testing  to help determine which option is best for them. Certain therapies are only available if your cancer has certain molecular changes.  Ask your doctor if you have had testing, what the results were and what they mean for your treatment choices.

If you haven’t had testing, you can call our HelpLine at 1-800-298-2436 and ask for testing through our LungMATCH program which will coordinate with your doctor. Even if you don’t have biopsy tissue samples and don’t want another biopsy, some testing can now be done by liquid biopsy which only requires a blood draw.

This is a time of great hope and change in the lung cancer community.  We have some amazing advocates who are surviving longer and speaking out louder to make sure that everyone has access to these new treatments. Be sure to educate yourself as much as you can and discuss all of your options with your treatment team.  If you are able, it often helps to bring a family member or friend to take notes and help you discuss your options at different steps of the journey.  And if you need support, you can call Lung Cancer Alliance HelpLine at 1-800-298-2436 for information or referrals.

As a scientist, the best part of my job is to watch scientific breakthroughs that lead to new treatment options that are helping people like you.  Stay tuned because the takeaway from that meeting is that many more of these are coming.

Tell Congress to Put Patients First When Addressing Healthcare

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“The universe doesn’t give you what you ask for with your thoughts; it gives you what you demand with your actions.” – Dr. Steve Maraboli

By Elridge Proctor, Director of Policy, Lung Cancer Alliance

The uncertainty of what “Repeal, Replace or Repair” of the Patient Protection and Affordable Care Act (ACA) mean is weighing heavily on the minds of patients, cancer survivors, families and the American public. We know this is especially true for you, so we are rallying advocates to write to their Members of Congress to ask them to prioritize continuous access to equal or better healthcare coverage for people with lung cancer and other pre-existing conditions.

You can send a letter and/or email now to your Senators and Representatives to tell them to put patients first when addressing healthcare. Once you have sent a letter we ask that you share it and invite family and friends to take action with you.

With the same click you will be inviting your Representatives to come learn and receive comprehensive information on lung cancer early detection, treatment options and the quickly expanding field of data and technology through LCA’s “State of Lung Cancer” Congressional Briefing on March 16, 2017.

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Questions? Email Elridge at EProctor@lungcanceralliance.org.

 

4 Simple Steps to Finding the Right Clinical Trial

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By Andrew Ciupek, PhD and Tara Perloff, Clinical Trial and Treatment Navigators

Today, there are more options for lung cancer treatment than ever before. Some are already approved and available. Others are only available through clinical trials. With so many clinical trials out there, the process of finding one can seem daunting.

Not to worry! We have you covered. Here are four steps to finding the right clinical trial for you.

1) GATHER INFORMATION: Each clinical trial is looking for a very specific patient and has a number of criteria that you must meet to qualify. Having as much information as possible will make it easier to decide if a trial is right for you. Here are some questions to ask yourself before you start a trial search:

  • What type and stage lung cancer do I have?
  • Has the cancer spread anywhere else in the body (metastasized) and where?
  • What are the names of all the chemotherapies and other drugs that I have received as part of my treatment?
  • Did I receive molecular (also called biomarker) testing and what were my results? (Many trials require certain tests to decide if you qualify – to get help with testing call our HelpLine at 1-800-298-2463)

2) FIND A TRIAL NEAR YOU: One of the most common ways to search for a clinical trial is online. Our LungMATCH program features an easy-to-use, personalized clinical trial search tool, helping you sort through local trials based on your individual information.

3) CONNECT WITH YOUR TREATMENT TEAM: Your treatment team knows the most about your individual lung cancer, as well as your overall medical history. They can help you determine if you are a good candidate for a specific trial, offer personalized recommendations and might know of trials in the area that are not online.

4) ASK FOR HELP: If you need help with your search, more information on a specific trial or just don’t know where to start – call our HelpLine at 1-800-298-2436. We have clinical trial specialists standing by the phones to answer your questions.

 

Find a clinical trial that is right for you at www.LungMATCH.org.
For questions about your lung cancer, clinical trials or other treatments, please call our HelpLine  at 1-800-298-2436.