Every Day is Parents’ Day

By JoAnn DeCesaris Wellington

My father was the type of person you couldn’t miss when he walked in a room. It wasn’t that he was a big “talker” but rather when he did speak it was something you wanted to hear.

Geaton A. DeCesaris, Jr. was kind, smart, generous beyond words and most of all, loving. He was a strict, tough dad, but he would smother us in so much love that we always felt safe.

Some of my favorite memories of my father are trips he would take my sisters and I on, like rides in the car to his job sites and Sunday morning breakfast before church. He never took anything for granted, always soaking up every moment and memory. Whenever he was with us he would always say “what a treat!”

When my father was diagnosed with lung cancer, he turned to prayer, which was always the center of his life. We gathered friends and family to pray together to give him strength during a challenging time. His positive attitude, spirit and drive inspired all of us.  When doctors gave him just a couple of months to live, he would say “someone has to be that 1% and it will be me.” We were fortunate to have my father four years longer than anyone would have thought and we made the most of every moment we had together.

I am now a mother of two beautiful babies and three amazing step-children. My daughter is named after my mother and my son after my father. My baby boy has a big name to live up to. I pray that he is like my father with his drive for life, work, family and faith.

Prior to his diagnosis, my father had started a family foundation. Once he was diagnosed and learned more about lung cancer, he directed the foundation’s efforts to cancer research and treatment. Since my father’s passing, my mother, sisters and I are still the board members of the family foundation. We have been fortunate to find organizations like Lung Cancer Alliance whose hard work and dedication contribute to the great strides being made in lung cancer research and treatment.

Sunday, July 23 is National Parents’ Day, a day to honor and thank our parents. Each day is Parents’ Day for me. My father is always with me, whether it be in the smile of a stranger or the embrace of my children.

Where’s My Pink Army?

Jenny at the White House during the National Advocacy Summit.

By Jenny White

I was in pure shock when my surgeon told me “it’s lung cancer,” while in recovery after video-assisted thoracic surgery (VATS) that was performed to find out what was growing in the right upper lobe of my lung.

Because I had no risk factors for this diagnosis, obviously my next move was to google “lung cancer.” How did this happen to me? I thought I was doing everything right.  I was living in the healthy lane. I watched my diet, exercised regularly, drank in moderation and was even training for the first Women’s Half Marathon in Nashville, TN scheduled just 10 days before my surgery.

But, how did this happen to me?  I didn’t smoke.

Jenny (center) and teammates running for the cause.

Well, as it turns out, if you have lungs, you can get lung cancer.  I also quickly realized that being diagnosed at stage 1, and removing the cancer surgically, was fairly rare in the scheme of lung cancer. Only about 17% of the time.

The facts made it clear to me that I had to use my voice to bring awareness to this disease.  The only reason my lung cancer was found early was because I foolishly combined bleach and ammonia to clean my bathroom which landed me in the hospital. That serendipitous moment caused my physician to order a chest x-ray which lead to the radiologist noticing a small “something” which we watched over the next 10 months. It grew, was removed surgically and now I am 6 1/2 years cancer free.

I knew how lucky I was and wanted to do something to help others. Where was my “pink army”? I wanted to enlist.  I thought it made perfect sense to check out the websites of what I thought were the major players in lung cancer to see what advocacy opportunities existed.  Sadly, the only mention of lung cancer was under smoking cessation.

With a little more searching, I found Lung Cancer Alliance (LCA), which is based out of Washington, DC.  I love that part of their mission is to advocate for more lung cancer research funding from the federal government.  Through their National Advocacy Summit, I get to tell my story, educate my representatives and ask for their help in further funding lung cancer research.

That fluke accident while cleaning my bathroom was nothing less than serendipity!  Maybe it was God working in unexpected ways or maybe I was always a cause waiting to happen. Either way, I’m just happy to be here.

Sign up today for the National Advocacy Summit in Washington, DC, September 27-28!

A Second Chance

Gary hooks success.

By Gary Stumpf

As with many, I accidentally found my lung cancer.  Last fall, a persistent cough brought me to the doctor (thanks to my wife’s insistence). A CT scan, followed by a lung biopsy, confirmed I had stage 4 adenocarcinoma.  Further testing found a 5 mm “suspicious” area in the front left quadrant of my brain.  By the time they approved and scheduled treatment, a gamma knife procedure, only 45 days later, the tumor had grown to 22 mm!  During this time, I was still going to the gym routinely with no noticeable effects on my health.  This soon changed.

They tested me for specific gene mutations as well as the PD-L1 protein, to see if I was a candidate for immunotherapy treatment. I tested negative on all counts and started IV chemo treatment in December 2016.  After just two rounds of chemo they decided to stop because the cancer had spread to both lungs with multiple tumors and another tumor in my brain.

Although it was incredibly hard, I did my best to maintain a very positive attitude, constantly reminding myself that I was going to beat this disease. I continued to go to work, a way to prove not only to myself, but also to others, that I was not going to let cancer control my life.

In March this year, they decided to go ahead and try Opdivo (nivolumab) immunotherapy despite the fact I did not have the protein PD-L1. Two weeks later, when conducting another gamma knife procedure on the second brain tumor, it was noted that this one had not grown at all, an early sign that the treatment was working.

At the end of March, I decided to retire at the age of 64 in order to focus on quality of life and spend time with my family. I got all my affairs and paperwork in order.

After two months of immunotherapy treatment, a CT scan revealed my cancer was now in remission and showed significant reduction! My doctor was notably surprised at the quick results. After the full four months of treatment, cancer was no longer found in my brain and the tumors in my lungs had shrunk by 80%.

I am sharing my story with you because I recently stumbled across the Lung Cancer Alliance website and commented on a blog post about a survivor story. It reminded me that I am not alone in my fight and that there is always hope.

I am now enjoying my retirement, playing golf weekly and fishing while walking 3-5 miles a day. I, now more than ever, prioritize time with my loved ones and a family trip is in the works.

As with any cancer, it could mutate again and treatment may be ineffective but for now, I count my blessings that I have more time to share my story and, hopefully, provide inspiration to others fighting this disease.  I hope that my story will not only inspire others, but also contribute to research so that more patients have the treatment opportunities that I have experienced.

If you have questions about your lung cancer or treatment, please contact us at support@lungcanceralliance.org or 1-800-298-2436.   

Beat the Heat!

Summer is heating up and that can play a role in cancer treatment side effects. While going through lung cancer treatment, such as chemotherapy, radiation, targeted therapies or surgery, it is important to find ways to escape the heat. Here are some helpful tips to keep you cool in the hotter months.

  1. Stay hydrated! – Staying hydrated is not only one of the most important rules during cancer treatment, but it is also one of the hardest to follow. Many forms of cancer treatment, like chemotherapy and radiation, are already dehydrating and the hot weather makes it worse. Fight dehydration by drinking more fluids, especially ones that replenish electrolytes, like Gatorade or coconut water. And, if you are not already receiving IV fluids during your infusion visits, ask your doctor about this hydration option.
  2. Dodge the Heat – During hot months, air conditioning is your friend! Avoid going outdoors between the hours of 10:00 am and 3:00 pm (the hottest hours of the day) or if the temperature is above 85 degrees. Consider taking your daily walk through a museum or enjoy the quiet and cool of a movie theater for the afternoon.
  3. No Excuses – We know it is tough, but staying active is important during your treatment. Not only will it keep your body strong, but it also helps with treatment side effects, like constipation. Move your daily, weekly or occasional exercise routine indoors where it is cool. Consider joining a local gym for the summer months.
  4. Eat the Right Food – Try eating food with higher water concentration. Eating dense fruits and vegetables (most contain 80-90% water) such as watermelon, cucumbers, tomatoes, strawberries, beets, carrots or celery with a meal or snack is one of the easiest ways to improve your hydration.
  5. Dress for Success – If you do need to go outdoors on a hot day, make sure to dress appropriately. Wearing light colors and loose clothes can make sun time more bearable. Additionally, be sure to protect your skin by wearing hats, using sunscreen and carrying an umbrella so you always have shade.

For more tips or other questions you may have about your lung cancer treatment (or anything else lung cancer related!), call our HelpLine at 1-800-298-2436.

 

 

2,800 Miles to the Summit

Mary and her husband

By Rev. Dr. Mary Holder Naegeli

Rev. Dr. Mary Naegeli serves as the Associate Chaplain at John Muir Medical Center in California. She is also an almost-four-year lung cancer survivor. She uses her own experience with cancer to help guide and support patients at the hospital. She and her husband will be driving from California to Washington DC to attend this year’s National Advocacy Summit. We sat down with Rev. Dr. Naegeli to learn a little more about her and why she has decided to drive 2,800 miles to share her story.

How has lung cancer changed your life?
Getting this disease, for which I had no risk factors, brought into my family the burden of caring for someone with a prolonged illness. It was good practice for them, and I learned how to receive care in a new way. But still, you hate to be the one whose condition makes your daughters cry.

In a time of great need and weakness, the experience of diagnosis and treatment for cancer tested my sources of medical, emotional, and spiritual support. They all passed with flying colors. I experienced the healing power of God. I overcame the fear of death. I learned how to adapt to physical limitations. I made new friends and my old friendships were enriched. I laughed a lot more than I cried. I wrote a detailed account of the journey every day and I discovered a kinship with fellow cancer patients, survivors and families.

Hiking in the mountains

On the down side, I developed asthma which was probably as a result of the radiation. While hiking in my beloved hills, I feel the loss of one lung lobe when I get short of breath before my heart rate gets to its optimum level or exercise. I still submit to regular CT scans, see five different doctors and get several labs done every year, all to remain medically vigilant.

Periodically, I have a few days of anxiety. These struggles are associated with an upcoming scan or even my “cancer-free” anniversary. Also, I am a hospital chaplain, and if I encounter several patients with deadly recurring cancers during any given week, I feel some anxiety well up. Before I had cancer, I never gave the disease a second thought.

Why have you dedicated your time to drawing attention to lung cancer?
At a very basic level, I just hate the idea that others will have to go through this ordeal, unless and until we find ways to detect lung cancer and even prevent it. If my participation in awareness and advocacy efforts can shine a light on lung cancer and its eradication, then I’m in!

Last year, during a trip to Washington DC, you visited your state representatives on Capitol Hill. What was it like sharing your story with leading government officials?
Well, I’m a natural conversationalist and, as a preacher, am used to telling stories! And the fact that I’m the one who knows my story best gave me confidence. The scenario is a little nerve-wracking, though: you generally have only 15 to 20 minutes with legislative aides, and then they stand up and the meeting is over. I was lucky to run into my own senator, Diane Feinstein (D-California), in the hall for a precious three minutes of heart-to-heart connection, and that was just plain exciting.

Meeting with Senator Diana Feinstein (CA)

I hope that the people I spoke to will remember my face, my story, and my plea to act in the best interest of lung cancer patients and survivors. I hope they will fund research, initiate new studies on lung cancer, and guarantee continuous care for pre-existing conditions. Congress can do something concrete and astounding if it shares my passion for progress toward eliminating this disease.

You are attending the National Advocacy Summit this fall! What are you most excited for?
My husband and I are planning our cross-country road trip around the dates. I am most excited to see our “strength in numbers,” to hug families who have lost loved ones to lung cancer and to celebrate life with fellow survivors. I am also excited about the possibility that we, working in concert at the Summit, can make lung cancer the topic of discussion on Capitol Hill that day.

Join Mary and other passionate lung cancer survivors and advocates for the National Advocacy Summit in Washington DC from September 27-28, 2017. Learn more!

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.