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.

 

 

Seesawing Our Way to a Cure

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By Bergen Kassoff, Alpha Omicron Pi Philanthropy Chair

Alpha Omicron Pi sorority partnered with Sigma Chi fraternity about ten years ago to begin our annual seesaw event. The event originated as a fun way for our two organizations to get together and raise money and awareness. Each year we seesaw on the front lawn of Lehigh University for 50 straight hours to help a philanthropic cause near and dear to our hearts.

This past year we chose Lung Cancer Alliance as our charity. We selected them in support of a member of Alpha Omicron Pi’s mother who has been battling stage IV lung cancer. We were specifically inspired by Lung Cancer Alliance’s “No One Deserves to Die” stigma-busting initiative, which serves as a reminder that there are many causes for cancer and no one deserves to be sick.

Our goal in hosting this event was to raise money and awareness for the disease. We set our fundraising goal to $10,000 and had all hands on deck to spread the word to spectators and donors. We are proud to announce that we exceeded our fundraising goal and raised a total of $12,558, the most we have EVER raised for this event! By the end we were successful in educating many students, faculty and members of the Lehigh community on lung cancer, the facts and how they can make a difference.

It was extremely rewarding to see that even a week after the event people were still wearing the lung cancer awareness bracelets and key chains to demonstrate their support in the fight. This was a truly empowering experience for all that participated.

We are honored to have had the pleasure to work with such an amazing organization and look forward to planning our next event with the Lung Cancer Alliance.

Interested in hosting a fundraiser in your community? Click here to get started!

Coping Series: Shortness of Breath

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This month we kick off our Coping Webinar Series, a program to help you manage the side effects and symptoms of lung cancer and its treatment. Our first webinar focused on shortness of breath, an incredibly common issue for those living with lung cancer.

We sat down with nurse practitioner, Dr. Lynn Reinke, PhD, ARNP, FAAN and certified nurse specialist, Donna Wilson, RN, MSN, RRT to determine the best approaches for managing shortness of breath.

  1. Medications: Inhalers deliver medication into the body via your lungs, helping keep airways open. Depending on the reason for your shortness of breath, medications like opioids or anti-anxiety medications may help. Talk with your doctor about what medications make sense for you.
  2. Pursed-Lip Breathing: A breathing technique that increases oxygen to the blood stream.
    Here’s how to do it: Inhale through your nose and then slowly exhale through your mouth. This can be done at rest or when moving.
  3. Diaphragmatic Breathing: This exercise helps strengthen the diaphragm, a large muscle in the stomach that plays a big role in breathing.
    Here’s how to do it: Put one hand on your chest and the other on your stomach. Breathe in and feel your belly expand. Breathe out slowly.
  4. Positioning: When feeling short of breath, it can help to change your body position. Slightly lean forward to let lungs expand, creating more room in your diaphragm to inhale and exhale.
  5. Hand-Held Fan: Hold a small hand-held fan directly to your nose or face for five minutes. This stimulates facial nerves, thus changing your perception of breathlessness.
  6. Relaxation Techniques: Try a relaxation technique to help lower anxiety. Here are a few to consider:
    Yoga
    Tai chi
    Guided visualization
    Meditation
  7. Energy Conservation: Plan ahead in order to conserve your energy throughout the day. Consider sitting down while doing tasks. Prioritize your activities and remember it’s OK to not accomplish everything on our “to do” list.
  8. Pulmonary Rehab: Offered at most medical centers, you will work with a multi-disciplinary team to devise an individual exercise program that works best for you.
  9. Environmental Factors: Avoid going outside on extremely hot or cold days. Be mindful of the air quality and avoid going outdoors when pollution levels are high.

Remember! It is important to talk with your doctor about what technique(s) is best for you.

Resources:
Click here to view the full webinar video.
Click here for a one pager with detailed descriptions of breathing exercises.
Here are some videos demonstrating helpful breathing exercises led by Donna Wilson!
For any questions about lung cancer or shortness of breath, call our HelpLine at 1-800-298-2436.

Survivor Spotlight

Ide Mills

Ide Mills

By Ide Mills

The day after Thanksgiving in 2010 I saw my internist for discomfort in my throat that I couldn’t clear.  She thought allergies, while I thought everything else, BUT cancer. Over the next few months, it became increasingly more difficult to complete a sentence without being short of breath. I was sent for a chest x-ray. I knew I had cancer when my internist called to tell me the test results – “there was something in my lungs.”

Both lungs were involved. Two and half months later, I was admitted to the hospital to treat my breathing difficulties and begin a complete work-up. That’s when I learned the disease had spread to my bones and the cancer had advanced to stage IV.

I was devastated – thinking about the treatment I would receive, terrified I would die from the disease within three years – the length of time my mother lived battling lung cancer. All I could think was I wouldn’t grow old with my husband nor see my children (17 and 21 years old) mature in their lives.

Thankfully it only took two and a half months for the doctors to determine the problem. The molecular tests of my cancer were not conclusive for ALK at diagnosis.  I began chemo for six cycles and did additional testing.

The tumor was ALK+, which has given me more treatment options and more time. Now five and a half years later, three ALK inhibitor drugs have been approved by the FDA, immunotherapy has entered into the treatment landscape, additional drugs are being investigated, NCCN treatment guidelines have changed and liquid biopsies have been approved. Currently I am on an investigational drug, lorlatinib, and doing well.

As a health educator in the pharmaceutical industry and a retired oncology social worker, I understood the road ahead could wind in many directions. Since being diagnosed I’ve been surrounded by support from professional friends and colleagues and long-time dear friends who cared deeply. That means a lot to me.

My family has been there by my side from day one. Living with cancer is only possible because of their love, devotion and humor. The theme music parties helped to get through long chemo days. Now that I’m on oral treatment I plug into Pandora and party solo.

I have experienced some really challenging times due to the disease. Life with lung cancer keeps me vigilante. A day doesn’t go by when I’m not thinking about it, but it’s what I think about that makes a difference in how I cope. I never stop reading about the advances in cancer care and exploring things I can do for myself. It is so important to learn as much as you can about your cancer and to be actively involved in your care.

My efforts in advocacy began as a social worker 30+ years ago. Today, I volunteer to increase lung cancer awareness, talk about the advances in precision medicine and treatment and encourage clinical trial participation. This past November I hosted a Shine a Light in my state and have spoken with staff at cancer centers across New Jersey as well as our state and national legislators. I am hopeful that in 2017 I will see a New Jersey proclamation that every November is Lung Cancer Awareness Month.

Interested in getting involved in the fight against lung cancer? Click here!

Share Your Voice These “First 100 Days” of 2017!

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Lung cancer advocates on Capitol Hill.

By Elridge Proctor, Director of Health Policy

Last year, we experienced the powerful role advocacy has played in achieving historical outcomes for lung cancer patients. The same holds true in 2017 for continued hope, promise and opportunity.

With the start of the 115th Congress and a new administration, our voices must be heard within the first 100 days to make the changes we seek and achieve outcomes that will deepen the legacy of “first-evers” in the fight to end lung cancer.

Last year, LCA introduced the Women and Lung Cancer Research and Preventive Services Act of 2016, which required a study and a corresponding plan that would provide better research, detection and treatment strategies for those women impacted by lung cancer.

The first ever Bipartisan Congressional Caucus on Lung Cancer grew and even more Members of Congress and their staff were educated on the impact of the disease and ways to improve your lives.

We remained a strong supporter of increased funding levels for cancer research in the annual appropriations for the National Institute of Health (NIH), National Cancer Institute (NCI) and secured $12 million dollars for lung cancer within Department of Defense bringing the total to over $100 million dollars!

We are proud of what we’ve done – yet there is so much history yet to be made. That’s why we need you to share your voice these “First 100 Days” to improve not only your life, but also the lives of others in 2017.

Included in our “100 Days” Action Plan are the following:

  • Re-establishing the Congressional Lung Cancer Caucus
  • Continue our Congressional Lung Cancer Caucus briefing series
  • Acting as the lung cancer voice in discussions on the Affordable Care Act (ACA)
  • Engaging in direct advocacy to maintain the patient protections for cancer survivors
  • Encouraging you to gain seats at the table when direction and input on health policies are needed
  • Calling on lawmakers to increase research funding, accelerate treatment approvals and put your needs front and center as health care changes
  • Demanding the inclusion of patient perspectives in the formation of any legislative proposals.

We need you to share your thoughts, experiences and personal stories to add value and weight — as decisions are considered regarding government funding for research, access to high quality health care and support services for lung cancer patients and families.

It is critical that your Members of Congress hear from you on the improvements in our health care system you value – so that we can be sure our system is being responsive to our community’s concerns and needs. Please send me your comments and feedback to share as I visit Members of Congress: Eproctor@lungcanceralliance.org.

 

 

 

A Tribute to Sheila Ross – Our Very Own Unsinkable Molly Brown

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Sheila Ross on Capitol Hill

By Laurie Fenton Ambrose, President & CEO of Lung Cancer Alliance

It is with enormous pride and with my deepest admiration and respect that I talk to you about Lung Cancer Alliance’s very own Unsinkable Molly Brown, Sheila Ross,  who after almost two decades of untiring and indefatigable drive and focus to bring life-saving change to the lung cancer community, retired at the end of 2016.

It has been widely acknowledged that Sheila is the founder of the “lung cancer movement” that today is reverberating around the world.  She conceived the reconstitution of our predecessor organization ALCASE to establish Lung Cancer Alliance – now 22 years old and nationally recognized as the highest rated charity for the lung cancer community delivering award winning community support, education, policy advocacy, and research both locally and globally.

Sheila was the very first advocate ever to elevate her voice and walk the halls of Congress to bring attention to the needs of the entire lung cancer community.  Sheila made early detection her battle cry and was a tenacious and resolute warrior using her sheer force of determination, dignity and unwillingness to be deterred by her critics when it came to advancing this life-saving benefit to thousands at risk.

Sheila conceptualized first-ever legislation requiring a more coordinated, comprehensive and compassionate response to this public health imperative.  She helped draft bill after bill that connected prevention, early detection and treatment research together in a continuum of care.  She testified before committees and panels advocating for expedited drug approvals. Sheila worked to establish the first and only dedicated lung cancer research pipeline within the Department of Defense Congressionally Directed Medical Research Program.  She urged the Department of Veterans Affairs to swiftly implement a national screening program.  She also worked to secure Medicare coverage for CT screening for seniors and the disabled and established the only patient-powered CT scan donation program, Give a Scan, which allows those impacted to contribute directly to research.

And, as a two time lung cancer survivor herself, Sheila always made herself available – day or night – seven days a week — to give advice and counsel to anyone seeking a helping shoulder to lean on.

I am privileged to call Sheila my friend and colleague in a battle to save lives.  Her contributions to better the lives of those living with and at risk for lung cancer will forever be remembered. When the defeat of lung cancer finally enters the annals of history, Sheila’s fearless advocacy will be included on the first page of that historical document.

Thank you Sheila for all you have done – and continue to do for our community.  The life-saving work you started is the wind at our back – and which will forever propel us forward.

 Read the Congressional Record from 2016 acknowledging Sheila and her impact on the Hill. 

2016 Year in Review: Science

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

2016 was another banner year for lung cancer science and research.  Here is what you should know and what you should look for in 2017.

LUNG CANCER TREATMENT:
Immunotherapy
The biggest news of the year was all about immunotherapies for the treatment of non-small cell lung cancer (NSCLC). A new drug called Tecentriq (atezolizumab) joined Opdivo (nivolumab) and Keytruda (pembrolizumab) as an approved treatment for patients with metastatic NSCLC who have already had chemotherapy.

Even more notably, Keytruda was the first immunotherapy approved for “first-line” meaning as a treatment before chemotherapy for patients with metastatic NSCLC. Data presented in December show that Keytruda improved survival and quality of life compared to chemotherapy.

This is a huge advance, but patients should take note that they should only consider Keytruda first line if they 1) have a “high” score on a test for a biomarker called PD-L1 and 2) don’t have a mutation that would qualify them for a targeted therapy (such as EGFR, ALK or ROS).  This is why molecular testing is so critical (see Diagnosis section below).

It is important to note for all of these immunotherapies that some patients who take them have very long-lasting benefits and very few side effects, yet still only a small percentage of people (typically 15-20%) are responding to them. They offer hope for many in our community but are not a miracle cure.

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For small cell lung cancer, the research has been a little slower, but never fear, there are clinical trials of all the immunotherapy agents and in particular, combinations of different drugs that are showing some promise in small cell too.

Targeted Therapy
Targeted therapy remains the best option for patients who have a targetable mutation. This year Xalkori (crizotinib) was approved for patients who tested positive for a ROS1 mutation.  Xalkori is also still the only first-line drug for ALK positive patients. However, data was presented throughout 2016 that show ALK inhibitors Alecensa (alectinib) and Zykadia (ceritinib) working well in the first-line, particularly on brain metastases. These drugs could be approved for first-line in 2017.

For those with an EGFR mutation, data showed that for patients with a T790M mutation in EGFR (which is common after resistance to other EGFR-targeted drugs), Tagrisso (osimeritinib) is likely a better option for you than chemotherapy.

Many other targeted therapies are in clinical trials and could be an option for you based on your molecular testing results. For those with small cell lung cancer, there is now a large, international trial of a drug that could become the first targeted-therapy in small cell.

Lung Cancer Screening:
In early 2016, Medicare started paying claims for lung cancer screening.  Now, if you are age 55-77, and smoked the equivalent of a pack (20 cigarettes) a day for 30 years, you can get a low-dose CT screen covered by Medicare that could potentially find lung cancer early, when it is most treatable. Talk to your doctor about this screening and if it’s right for you.

LUNG CANCER DIAGNOSIS:
Due to the changing options to treat lung cancer, it is critical to have molecular testing on your cancer when first diagnosed or as soon as possible.  We have launched a new program called LungMATCH to answer questions and help walk you through this process. If you have not had testing, talk to your doctor or call us at 1-800-298-2436.

The science around lung cancer is improving at a rapid pace and we will keep you as up to date as possible on it all! Because no one deserves lung cancer and everyone deserves a cure.

 

 

A Holiday Message for You and Yours

Laurie Fenton Ambrose, President & CEO of Lung Cancer Alliance

Laurie Fenton Ambrose, President & CEO of Lung Cancer Alliance

Dear Friends,

With the holidays upon us and 2016 drawing to a close, now is the time to look back at this incredible year. Together we have reached new heights for curing lung cancer.

We funded groundbreaking research on immunotherapies, created a brand new program to put patients on the path to their best treatments, expanded our network of screening centers of excellence across the country to over 450 and so much more!

We couldn’t have done any of it without your generous support. As the season of giving comes to an end, we hope you will consider a gift to Lung Cancer Alliance. This year, your gift will be doubled by an anonymous donor, up to $40,000, if received before December 31st.

By making a donation, you will do something special for someone else. And there is nothing quite like it.

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I hope you cherish this time with your family and friends. Please know we will hit the ground running in 2017 to save even more lives! I look forward to working with you to make it happen.

Best wishes,

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Laurie Fenton Ambrose
President & CEO
Lung Cancer Alliance

P.S. Consider other ways of giving this holiday season, including gifts of stock.