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

Sheila Ross

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.

 

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!