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.

 

Thank You For Never Giving Up

By Diane Levinson, lung cancer advocate

Years ago I found Lung Cancer Alliance when my sister was diagnosed with Stage IV lung cancer. They were the only group out there who could give me the resources and information my family needed at a truly difficult time.

After I attended their annual Summit on Capitol Hill I was overwhelmed by the empowerment I felt as I walked to each congressional office and shared my story. I return year after year and bring other family members with me, so they can see the impact that each and every person can have on the future of this disease.

This year, and every year, I give to Lung Cancer Alliance because I have seen first-hand the life-saving work that they accomplish. I hope you’ll join me this year in supporting this top-rated organization so that together we may change the course of lung cancer. Thank you for never giving up.

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How to Help a Friend with Cancer

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Heather (right) and her family.

By Heather Erickson

We discovered the hard, swollen lymph nodes above my husband, Dan’s, left collarbone in October 2012. Both of us knew that something was wrong and in the short time leading up to the doctor’s appointment, we did exactly what everyone tells you not to do; we scoured the internet.

Everything we read said metastatic cancer—most likely lung. We kept searching. It couldn’t be lung cancer. Wasn’t that something only smoker’s got? We soon found out that anyone can get lung cancer. Dan was diagnosed with stage IV, non-small cell, adenocarcinoma. Our world turned upside down. Our daughters were just 14, 10 and 8 years old at the time.

The negative response to our situation took us by surprise. Some people said the most inappropriate things. Usually, they did it thinking they were being helpful, but it was painful.

Worse yet, friends who we thought would always be there for us, disappeared. For a while, we felt incredibly alone.

Even more surprising were the people we hardly knew, who seemed to come out of the woodwork being so generous with their time, love and prayers. It was their thoughtfulness that raised our spirits in this difficult time.

I soon decided that most of the time an inappropriate (or lack of) response, comes from not knowing what to say or do, to help. So, I wrote a book called Facing Cancer as a Friend: How to Support Someone Who Has Cancer.

Here are some important tips to consider when supporting a friend with cancer:

  • Ask permission before visiting. Make it clear that saying no is perfectly fine.
  • Before asking “personal” questions, find out if questions are welcome. Your friend or their caregiver will likely be happy to answer, but they may wish to keep some things private.
  • Most patients have a medical team, as well as close family members, participating in their decision-making process. Adding your two cents can be like the proverbial “too many cooks in the kitchen.”
  • Avoid bringing up behaviors (past or present) that may or may not have contributed to his or her disease. They are fully aware of these things and often feel guilty about them already.
  • If they express a desire to “give up” on treatment, avoid the natural reaction, “You’ve got to just keep fighting.” This can make the patient feel guilty and like you didn’t really listen to them as they expressed their feelings.
  • Instead, be supportive of your friend’s feelings. Allow them to be negative, withdrawn or silent, if they need to be. Resist the urge to change the subject. Silence and holding their hand can be a greater comfort.
  • Instead of giving advice, ask advice. This helps him/her maintain an active role in your friendship. Just because your friend has cancer, doesn’t mean their need to help and be heard has gone away.

Today, my husband is receiving the targeted treatment, Tagrisso, for the T790M mutation and feeling the best he has in over four years. Although he experiences chronic muscle and joint pain, due to years of treatments, Dan is living an active life. Our family is very thankful.

Heather Erickson is the author of Facing Cancer as a Friend: How to Support Someone who has Cancer and The Memory Maker’s Journal: Putting Your Memories into Words.

 

I Fight For Michael

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.

Tammy, Michael, Mike (her husband) and Michelle

Tammy, Michael, Mike (her husband) and Michelle

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.

A Daughter’s Pride

Darcy and Rich

Darcy and Rich

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.

Rich fishing with his grandson

Rich fishing with his grandson

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!

Don’t Be a Lame Duck

 

Elridge Proctor, Lung Cancer Alliance's Director of Policy

Elridge Proctor, Lung Cancer Alliance’s Director of Policy

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!

Five Easy Ways to Make a Difference During Lung Cancer Awareness Month

This is one of the shareable Facebook statistic graphics. Check out our Facebook page to find more during November!

This is one of the shareable Facebook statistic graphics. Check out our Facebook page to find more during November!

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!

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The Power of Molecular Testing and Clinical Trials

Micky MacKinnon

Micky MacKinnon

By Micky MacKinnon

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

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

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

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

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

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

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

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

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

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

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

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