Survivor Spotlight: Vincent

Vincent getting ready to take a ride on his longboard.

By Vincent Wuellner

“There was an element of chance in my lung cancer diagnosis.  A coworker noticed a lump in the skin at the base of my neck and advised me to have it looked at.  It turned out to be nothing, but the x-ray image did show an area of concern in the upper lobe of my left lung. I was referred to a pulmonologist and had CT scans every six months for several years that showed the spot slowly growing and increasing in density.

The growth continued consistently with each scan, so I underwent a needle biopsy. The result was stage 1a non-small cell adenocarcinoma.

There is no doubt a cancer diagnosis gets your attention. I had just turned 57, was married to a wonderful woman, physically active, working full-time and was enjoying watching my son progress through high school.  Cancer was the last thing I wanted to deal with.

I quickly learned that surgery, a lobectomy, was the only treatment option available to me.  This was difficult for me to accept, and became my main concern.  I did a great deal of Internet research for an alternative treatment solution.  I experienced a lot of anxiety about the surgery, my main worry being potential breathing issues.  The irreversibility of the procedure frightened me; once the lobe was removed, it was gone forever.

My research led me to Lung Cancer Alliance (LCA), where I began reading blogs and articles, and was soon asking questions and getting prompt answers.  I really liked the site.  It felt like a community.  I was connected with a Phone Buddy; an amazing guy who had been through an experience very similar to my own.  This was a big step in my acceptance of having the surgery.

I underwent surgery at Moffitt Cancer Center on February 8, 2016, went home eight days later, and returned to work on March 18. Following my surgeon’s advice, I walked every day, first around the hospital and gradually made my way to one mile, then two.  In April, l started riding my longboard skateboards again, and now, a little over a year later, I often skate 20 miles or more on a free weekend.

My advice to anyone facing a lung cancer diagnosis?  Consider a second opinion. I didn’t feel comfortable with some of what I heard from the first surgeon I consulted, but was able to find a better option for me. Also, reach out to LCA for support, not only is it a great resource; I found it to be a community of caring people.  No matter how alone you feel, know there is a community supporting you and people who have walked in your shoes.”

Do you have questions about your lung cancer diagnosis or just need someone to talk to? Call us! 1-800-298-2436.

 

 

 

My Dad with the Will of Steel

Robert and Kasey on Kasey’s wedding day.

By Kasey Grizzard

Four years ago, my father, Robert Grizzard, was diagnosed with stage IV Adenocarcinoma. This is the type of news that no one wants to hear about a loved one, especially a parent. It hits you like a ton of bricks.

My father and I have always been close. When I was a kid, we did everything together. He taught me how to hunt, fish, and my favorite, how to play baseball. We practiced together every day. It wasn’t until I was older, looking back on those memories, that I realized how dedicated he was to, not just baseball, but to everything in my life; always pushing me to be my best self. What I admire most about my father is that he has given me the tools and guidance to help me succeed in everything that I do.

My father’s lung cancer diagnosis has definitely made our relationship even stronger. We talk all the time even on days when we don’t have anything important to talk about. We both have a greater appreciation for one another and our time together and know that staying in touch has more meaning today than ever before.

Cancer is a negative thing, but that does not mean it needs to be a negative in your relationships with loved ones. If anything, it sheds a light on how precious each and every moment is that we have together. Cancer has helped me to see a new side of my father; one of pure strength and will. He has refused to let cancer control him, and instead, made it a minor speed bump on the road of life.

My father has done things I never thought he would be able to do after his diagnosis. He remains committed to his golf game, continues to pursue his love of scuba diving and, recently, he parachuted out of an airplane! He is a man full of adventure, drive and life and he inspires me every day.

My advice to other families starting this journey is easy: don’t let cancer take over. Spend as much time with your loved ones as possible, always have a positive attitude and strive to meet and exceed goals. For my father, I knew he wouldn’t miss my wedding for anything, so he fought harder and reached that goal. Now, he is on to the next goal: attending my brother’s wedding! I know he’ll be there.

Read Robert’s story from his voice. Get to know this inspiring man!  

 

 

We Are Stronger Together

Nicole with her mom, dad and brother shortly after her mom was diagnosed.

By Nicole Lindgren

My mom was diagnosed with stage 3 lung cancer at the age of 50. She had a persistent cough that just wouldn’t go away. After a number of false diagnoses and no resolution, a CT scan was ordered which revealed tumors in her lungs.

There were points during her treatment where I thought, “I don’t know how we are going to make it through this.” After the tumors metastasized to her brain, she decided to decline treatment and returned home. Four days later, we lost her.

My family struggled after her passing and learned that there was very little local help for people affected by lung cancer. Luckily, we were able to find Lung Cancer Alliance and got some direction to channel our desire to support others. We began hosting a Shine a Light on Lung Cancer event every November for Lung Cancer Awareness Month. I hosted the event for seven years, but it still didn’t feel like enough. We wanted to do more. That’s when we decided to start Lung Love Run/Walk Portland.

Lung Love Run/Walk Portland is a special day to connect with others to provide the type of positive, community support we all need to fight this disease. It offers an opportunity to share stories and celebrate survivors. I participate because I want to bring more awareness to a disease that tends to be over looked and underfunded, despite being the leading cancer killer.

Nicole with family at Lung Love Run/Walk Portland, walking in honor of her mom.

I still miss my mom every day, but helping raise awareness through events like Lung Love Run/Walk keeps her spirit alive. It’s rewarding to use my experience to help others in some way. I know she’d be proud.

For those caregivers helping a loved one with lung cancer, my best advice is to seek help. Don’t try to do it alone. Lung Cancer Alliance has a toll-free HelpLine and great support services, like their Phone Buddy program. You can also reach out to your local hospitals for support. You have to take care of yourself before you can take care of others.

My journey has taught me that regardless of how lung cancer touches you, we are all stronger together! So join me on Saturday, June 24th at Laurelhurst Park in Portland, OR as we lift each other up in our fight against this disease!

Join Nicole and others for the Lung Love Run/Walk 5K on June 24th. Register today!

 

This One’s For Sunny

Sunny

by Deena Cook

We met Sonia “Sunny” Janin at the first Lung Cancer Alliance National Advocacy Summit we attended in September 2014. This event changed my life and Sunny was an important part of that change. There were five other women from Maryland in our group; we all had been diagnosed with stage 1 NSCLC. The majority of this group had been diagnosed by “accident.”  Several were never-smokers. A few, like me, had smoked when we were younger, quitting decades ago.

The one thing we had in common was the fact that we all knew how lucky we were to have had our lung cancer diagnosed early. We also were extremely motivated to inform our Congressional leaders that the stigma associated with lung cancer is suppressing equitable research funding for this disease and it must stop!

Sunny, a delightful and feisty lady, did not hold back when she spoke to a Representative on the dire situation surrounding lung cancer and the lack of research funding.  It was Sunny who recognized Senator Barbara Mikulski in the hallway outside of her offices just after we met with one of her staffers.  We quickly surrounded the Senator and gave a short “speech” on why lung cancer, the leading cause of cancer death, requires equitable research funding.  We also insisted on a photo with the Senator. Sunny is on the far left. She was very proud to have corralled the Senator!

Maryland constituents with Senator Mikulski (Sunny on the far right)

During the rainy 2015 National Advocacy Summit, it was Sunny who brought sunshine that day with her smile and enthusiasm to get things DONE in Washington! It is hard to believe that not long after we were together on that day, another primary lung cancer tumor was discovered during Sunny’s annual CT scan. This totally caught me by off guard, since Sunny had passed the “magic” five year threshold for cancer survivors and had graduated to annual screenings. Unfortunately, this time, Sunny’s lung cancer was diagnosed at stage 3.

Even last year at the 2016 Summit, although Sunny could not attend, she was with us every step of the way. We connected through texting and Facebook to ensure her presence was felt in our meetings on Capitol Hill.  Sunny has been a mighty, optimistic warrior for the last two years. Last month, I learned that we lost Sunny to lung cancer.

This September, at the 2017 Summit, we will be advocating for Sunny and ALL of the dear lung cancer patients who have passed and for ALL current lung cancer warriors who continue to fight.

Faith does not make things easy; it makes things possible! I have faith that through awareness and advocacy we WILL improve outcomes for all lung cancer patients. We owe this to the dear friends we have lost to this disease especially Sunny who will no doubt be with us in spirit!

Join Deena and other passionate lung cancer advocates at the 2017 National Advocacy Summit from September 27-28, 2017. Apply today!  

ASCO 2017: What You Need to Know

Lung Cancer Alliance staff, Emily Eyres, Andrew Ciupek, Jennifer King and Lanni Boyd, at ASCO.

By Jennifer King, PhD, Director of Science and Research

The Lung Cancer Alliance team just returned from the biggest scientific meeting of the year for those who treat patients with cancer, the American Society of Clinical Oncology (ASCO). Overall, new lung cancer treatment options are evolving and increasing, offering patients more personalized care. An important theme in the meeting was that molecular testing is critical for patients with non-small cell lung cancer (NSCLC) – it can help direct your therapy choices as well as which clinical research studies may be a good choice for you.*

You may have seen some real-time news about these developments during the event on our @LCAorg Twitter feed, but, if not, here’s a recap of the biggest findings in the area of lung cancer:

Targeted Therapies:

  • As a first therapy for lung cancer that has changes in the ALK gene, Alecensa (alectinib) delayed cancer progression significantly compared to the currently prescribed Xalkori (crizotinib) – 25.7 months compared to 10.4 months.
  • New ALK drug, lorlatinib, helped patients who had already relapsed from other approved drugs to target ALK+ cancer, including those with brain metastases.
  • Tagrisso (osimeritinib) can also be effective in patients who have brain metastasis from EGFR+ lung cancer.
  • A new drug, dacomitinib, was shown to be more effective than Iressa (gefitinib) for first treatment of EGFR+ cancer, although with more serious side effects.
  • There may be a survival benefit in taking targeted therapies for specific mutations in the NTRK, MET and HER2 genes. These drugs are in clinical trials now and molecular testing of your cancer can let you know if you are a candidate.

Phase III ALEX Trial: Alectinib Halts Lung Cancer Growth More Than a Year Longer Than Crizotinib

Immunotherapies:

  • Updated Keytruda (pembrolizumab) data confirmed that if your NSCLC has a “high” level of the PD-L1 biomarker, Keytruda is more effective than chemotherapy as your first treatment. (This included comparing Keytruda followed by chemo to chemo followed by Keytruda.  Keytruda first was better for these patients.)
  • For patients with small cell lung cancer, Opdivo (nivolumab) plus Yervoy (ipilumumab) may be a promising treatment option after chemotherapy. 26% of patients who had relapsed, extensive-stage SCLC survived for two years on this combination. More trials are underway.
  • Immunotherapy drugs are being combined with many other types of therapies and new types that are in development. There are many promising combinations of clinical trials that you can consider.* Scientists are studying which drugs to take together and in what order drugs should be taken.

Chemotherapies:

  • In elderly patients (>70), adding cisplatin to another chemotherapy does not provide a significant survival benefit.

Patient Engagement: 

  • Having patients with cancer report their symptoms from chemotherapy weekly on an online system led to better quality of life and most importantly, longer survival. Patients should be empowered to discuss symptom management with their treatment team!

Overall, there is a lot happening in lung cancer research and we expect to see many more treatment options for all types of lung cancer in the coming months and years.  Stay tuned!

*If you are looking for information on clinical trials or have not had molecular testing, call 1-800-298-2436 to find out about our LungMATCH program.

 

“I Decided I Was Going to Live Life”

By Robert Grizzard

I was diagnosed on June 7, 2013 at age 62 with stage IV Adenocarcinoma.  I had been preparing for my retirement when cancer reared its ugly head. I wasn’t ready to give up on life. On my first visit with my oncologist, he said that the best thing I could do for myself is maintain a positive attitude. I decided that I was going to live life.

Cancer has in some ways been a blessing to me. I have learned to relax and enjoy life. Cancer can only take away from you what you allow it. I choose to allow it to be a subtitle in my story not a main event. It does not define me or describe me.

I have had surgery, 16 rounds of IV chemo, four targeted radiation treatments, two targeted therapies, and even six months of NED. At each point I have to adjust to a new normal.  I draw inspiration from people who have written about their stories, other survivors that I have met both in person and online. I am blessed to have a dedicated caregiver and medical advocate in my wife, as well as a support network of family and friends.

In addition to a positive attitude, I maintain hope. New treatments are continually being developed.  Since August of 2016, I have been on a 3rd generation targeted therapy that was only approved for use six months prior. This drug has regressed my cancer, which had spread to my liver and bones, back to my lung and significantly reduced activity there.

After four years I feel better than I ever thought possible at the beginning of my journey.  Through it all I have striven to enjoy life as much as possible and am grateful for each day. I have stood beside my son as his best man, been scuba diving, and recently jumped out of a perfectly good airplane. Some say I have a will of steel, but I decided four years ago that cancer wasn’t going to stop me.

“I Found Strength I Never Knew I Had”

Geri celebrates her 10 year anniversary of lung cancer survivorship!

By Geri Mangas

My story began exactly 10 years ago today, June 4th, 2007, with a right lower lobectomy. I discovered I had stage 2A non-small cell lung cancer during a routine exam by my cardiologist. At the time, I didn’t know anyone survived lung cancer.

I was diagnosed on a Thursday and had surgery on Monday.  Within five days my life was turned upside down and changed forever. I have found strength that I never knew I had. My focus became survival, I had a lot to live for.

In my 10 years of survival, my mother was able to see me regain health, I witnessed both my children get married and experienced the joy of my four beautiful grandchildren. I am blessed.

Each year since 2007, June 4th has marked a milestone for me to celebrate. There have been years that were pretty significant to me, 2 years, 5 years, 7 years, but this is the year I will say I beat cancer and truly believe it. For my 10 year anniversary to fall on National Cancer Survivor’s Day is like icing on the cake.

My advice to someone newly diagnosed is to get a Phone Buddy. Family and friends want to comfort and help but they don’t know what you’re experiencing. Talk to someone that can give you support and hope.  It was one of the best things I did.

 

The Phone Buddy Program is our peer-to-peer program for people with lung cancer. Our Phone Buddy volunteers have either been through or are going through lung cancer treatment and as a result are uniquely qualified to lend support and share information and resources. For many, talking with someone who has been through a similar situation can really make a difference. Click here to learn more! 

My Lucky Break!

Dann (center) at Lung Love Run/Walk Portland.

By Dann Wonser

Eleven years ago, in 2006, I got the luckiest “break” of my life: I broke my ribs.

While that may not seem all that lucky, those broken ribs led to an X-Ray, which led to the discovery of the spot on my lungs that was later diagnosed as Stage III lung cancer.

Lucky me! Because of broken ribs, we caught the cancer early enough for the surgery to remove one of the lobes of my lungs that along with chemo treatments saved my life!

My wife Genevieve and I became grateful for every single day that I stayed alive. And I was not just staying alive – I remained cancer free for almost five years!

That wasn’t my only “lucky break,” however. In 2011, the cancer returned and this time it was Stage IV, and the chemo didn’t even put a dent in it. Luckily, the world of treatment was evolving just when I needed it. I was able to take Avastin, a new chemo maintenance drug, which kept the cancer from growing for a year and a half. Next, I was on another treatment that didn’t exist the first time I went through cancer: A targeted therapy for my EGFR mutation called Tarceva. Another year and a half of successful treatment! When that stopped working, I got into a clinical trial for another new targeted therapy, this time for my T790M mutation: A medication now known as Tagrisso. Thirty-two months later, I’m still having no signs of progression. Yeah!

How lucky can one guy be? I’ve been on three treatments that didn’t even exist the first time I had cancer, which have given me another six years of life. And I’m not done yet!

With all of these “lucky breaks,” I decided that I wanted to take advantage of this gift of life, and make a contribution for the benefit of other survivors in any way that I could. I started a blog (www.dannwonser.com). I began (gulp) public speaking, something I hadn’t done for about forty years, and I began writing a book. And along the way, I found Lung Cancer Alliance.

Here was something I could get actively involved with in different ways. I signed up for Lung Love Run/Walk Portland, which I could do in my own community. As a giant bonus, I met a couple of other survivors who have become friends. I started my own team, Live Lung and Prosper, and invited family and friends to join me. It was important for me to raise awareness, and funds for lung cancer research.

That walk was just the beginning, however. My exposure to Lung Cancer Alliance got me interested in their annual National Advocacy Summit, which involved a trip to Capitol Hill with other survivors and advocates. I got to meet with members of Congress to help them understand how they could further lung cancer awareness and research. Being part of democracy in action got me pumped!

That excitement has made being involved in this year’s Lung Love Run/Walk even more meaningful for me. I understood more of the mission first-hand. This year, Live Lung and Prosper will return, hopefully with even more family and friends by my side.

The first time I went through lung cancer, I had never met another lung cancer survivor, and didn’t know about any online resources. In fact, it was eight years after I was first diagnosed before I ever met anyone who could understand what I was going through first-hand. None of us have to be this isolated anymore! Come join the walk, feed off all that positive energy and meet others who have been through experiences like your own. And a real bonus for me: By starting my own team, I felt tremendous support from the people who chose to join me or donate in my honor. And while so much of the time being a survivor means being on the receiving end of support, by joining the walk, you are making a difference for others.

 

Join Dann at Lung Love Run/Walk Portland in Laurelhurst Park, Portland Oregon on Saturday, June 24th. Learn more!

Click here for more information on the National Advocacy Summit taking place September 27-28, 2017 in Washington, DC.

Cancer Has Allowed Me to Live

Trish Strulson Photo

Trish and George

By Trish Strulson

I am a survivor, fighter, traveler and explorer. Three and a half years ago I was none of these. My daughter, Taylor, had the difficult task of telling me I had lung cancer. I was only 44 years old. The surgeon informed Taylor of the diagnosis after performing my lobectomy. I woke up from the surgery with her standing over me crying.

It was terrible, but, looking back, I now realize it was also one of the most empowering, important moments of my life and it made sense that my beautiful daughter was the one to open that door to the next chapter.

When I was diagnosed, I was married to my husband of 20 years. We had been growing apart for some time and my cancer diagnosis only amplified my loneliness. I am a caregiver by nature and had lived most of my life for other people. My diagnosis gave me the clarity to see I needed to live life for myself and experience all that it has to offer like a trip to Florida or even a night out with friends to play bingo. I was not going to let cancer take that away from me.

Trish and Taylor

Trish and Taylor

As a mother, I found out through my illness I needed to let go. I always steered Taylor through life, making decisions for her and pointing her in certain directions. I worried that she would not be able to move ahead in her life without me. What would she do? Who would come to her aid when she needed help? I realized that she had a lot of growing up to do, but I also knew that she needed the room to blossom that I did not get in my own life.  My illness made me really think more into the future of the “what ifs”. Life was too short to hold back and worry. Both Taylor and I needed to live our fullest lives, whatever that might look like.

My new normal consists of getting from one scan to another, living life by the seat of my pants. I have met my soul mate, George, who I know loves me unconditionally. I surround myself with people who care about me and bring positivity into my life. When I met George I told him about my “never done befores” and we knock those off the list on a regular basis. He took me to Florida a year ago and we both cried as we crossed the state line.

My strength is found within the love I have for my boyfriend, daughter and grand kids. I fight for them and for tomorrow, the day after that and the day after that. I want to live and cancer has allowed me to realize that!

My advice to others faced with this disease would be to fight, don’t feel sorry for yourself and absolutely don’t be a victim. Live every day to the fullest, laugh and love. Get to know your body and if something isn’t right do something about it.

I was a lot of things three and half years ago but today I am a lot more. Now I am a better mother, friend and partner. I am a proud SURVIVOR of lung cancer who is living her best life.

To read more inspiring survivor stories, check out our Facebook page

 Have questions or just need someone to talk to, call us at 1-800-298-2436 or email support@lungcanceralliance.org

Life Lessons From a Nurse

AprilPLANK_130122-LungCncrAwd-0333

April Plank, DNP

By April Plank, DNP, The Center for Lung Cancer Screening and Prevention, Stony Brook Medicine

I realized at a young age that I enjoyed working with people.  This rather broad statement could have led me down endless career paths. My decision to choose the nursing path was easily made after realizing that a nursing degree, while single in its title, yields endless opportunities.  During my years of schooling and internships, I came to discover two common factors that crossed all specialties:  Years of experience trumps book knowledge AND kindness matters.

I chose a full-time position in the medical intensive care unit where I gained experience with critically ill patients, including those with cancer. My notion of cancer being a terminal disease where the medical team is often powerless dissipated as I learned the many ways that a healthcare professional can impact a patient’s life.

I recall quite vividly my first patient with lung cancer.  Ms. E (as we will reference her here) was a 37 year-old heavy smoker who went on life support after she become septic during chemotherapy.  She was weak and frail with a beautiful blue head wrap.  During one visit, she asked me if I knew the song “Amazing Grace” which I would later learn was her father’s favorite song.  I told her that I did know the song well, as it was a regular during the Sunday church service I attended.  She explained that her father was coming in from out of town and she hoped that I would sing it for them during his visit. This request was a surprise but it wouldn’t be the last time that I would be asked to do something “outside of the box.” Shortly into her father’s visit, I heard the familiar sound of Ms. E’s call bell rang requesting the song.  I was joined by three ICU colleagues in the most moving and difficult song as Ms. E mouthed the words as we sang.  There was not a dry eye in the room and shortly after Ms. E. fell into her last sleep.  I wept endlessly as we prepared her for her eternal rest.

As I cried, asking “Why?”, I realized that I might never know all the answers.  I also became keenly aware that while we (nurses) might not always be able to cure patients of their disease, we are ALWAYS able to help make the journey easier and the burden lighter.

That evening, singing to Ms. E and her father, I realized that in addition to all the medications and care that people with devastating diagnoses needed, one thing that all of us in the healthcare profession could offer was HOPE.  Time and time again, I have seen the power of that hope in the eyes and lives of my patients dealing with a cancer diagnosis.

I focused on pulmonary diseases including lung cancer from that time on.  I later subspecialized in lung cancer as I recognized that the more focused I could be, the more expert I would become thus positioning myself to make the greatest contribution to those affected by the disease.

I am happy to report that the years that have passed since singing “Amazing Grace” have brought many changes in the lung cancer treatment arena.  New drugs and therapies as well as new treatments have emerged providing evidence that there is every reason to believe that progress is here to stay.  Lung cancer, which was once thought to be a terminal disease leaving us powerless, is becoming one that can be managed and people are living longer after diagnosis. I take great joy in informing lung cancer patients that HOPE prevails. I have watched in awe as many defy the odds and I enjoy sharing those stories with other’s fighting the disease. In addition to treatment options for those diagnosed, lung cancer screening guidelines now provide opportunities for those deemed at high risk for lung cancer to undergo screening for lung cancer with hopes of increasing early detection of this disease.  This coupled with smoking prevention initiatives in schools, smoking cessation education and environmental hazard awareness will also change the tide with a decrease in the burden lung cancer.

Additionally, I am passionate about helping patients through the guilt and shame that tends to accompany lung cancer as the “smoking cancer.”  They deserve the hopeful news that smoking cessation, even at the time of diagnosis, can result in better response to treatment, increased survival time and decreased rates of lung cancer recurrence.  I encourage every patient to channel their grief and regret for smoking to the mission of raising awareness among the millions of youngsters who are vulnerable in getting caught in smoking addiction.

Here are my words of advice to patients:

  • Never lose hope! And as one of my patients once said, “Live life to the fullest”.
  • Be sure to communicate with your healthcare team. It may be helpful to write down your questions and concerns so as not to forget during your office visits.
  • Don’t be shy about seeking a second opinion.
  • If you are, or were, a smoker; don’t dwell on the past but recognize that each day that the sun rises is a fresh start.
  • Read about patients who have defied the odds of this disease. Know your options for treatment and be sure that all of your questions are answered.
  • You are not alone in this journey. Allow your family, friends and healthcare team to support you along the way.  Consider joining a support group where you may meet someone who is many months or years into the diagnosis and can encourage you as you undergo treatment.

Much progress has been made in the lung cancer arena.  I speak on behalf of many who are honored to work in this field in saying we will not stop until we have found a cure.  Keep the faith and be forever HOPEFUL.