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By Jeff Stibelman
March 2024

I was first diagnosed with cancer of the cervical spine on January 1, 2017, after experiencing very severe nerve pain down my whole right side. Thankfully, due to the sensitivity of what was to be my operation, my doctor sent me to one of the best surgeons in the country at USC Keck MD Center, LA, California. At that time I was told in the beginning it was a schwannoma, a non-cancerous lesion, but it was on my main nerve, hence the excruciating pain, affecting my whole right side. I had to wait for weeks with a lot of pain, since they thought it was benign. I finally had quite an extensive surgery, it lasted for many hours. After a week stay in ICU I found out it was atypical, and it was indeed, cancer!

Because of the sensitivity of the surgery and fear of paralysis, they only removed 3/4 of the tumor, leaving me with some slight paralysis and of course the remaining cancer. Next was radiosurgery radiation to try to get the remainder. I was then included by my surgeon as part of a study and in his classes at USC as my case was very unusual. He wanted to keep me there as a patient because of it being so rare I stayed for 3 months until insurance disallowed me from staying any longer.

Jeff with his oncologist

Before I left, my doctor at USC, who wanted to keep me, taught me what to say, how to say it and what to ask for and most importantly to advocate for myself. He taught me so much, he is an amazing human. So after radiation I went back to my original care facility, I was seen by a neurologist oncologist every three months for MRIs, labs and scans that included a full body scan. Everything seemed to be going pretty well and stable until fast forwarding to March of 2021 when I decided being immuno-compromised I would get the COVID vaccine. Before doing so my PCP who I’ve been seeing and knew for a very long time suggested I come in and he do a complete physical on me since I hadn’t had one for a couple years. All looked great, he listened to my heart and lungs and they sounded all clear by stethoscope. However, I was complaining of a slight cough, so my doctor decided at that time to do a chest x-ray, as I hadn’t had one for quite some time.

Now mind you, at this point a lot of doctors would have just said everything looks good. You probably have a slight cold starting, so go home and get some rest and drink a lot of fluids. But because I’ve known him for so long, he decided to take the extra step and give me the x-ray. He said go down and do the X-ray and come right back up again so he can read it instead of waiting for it to come up in the portal. As I walked back in the room, it was evident by the look on his face, which I’ve seen before, and I knew in my heart what it meant when this normally very stoic doctor looked visibly concerned. He turned the screen and showed me what was a very large mass in my lower right lobe. He ordered a PET scan, CT scan, and MRIs. Then he referred me to see a pulmonologist who did an Ebus (scoping and sampling of the mass for testing) which showed that I had stage 4 non-small cell lung cancer, with mets to a lymph node, brain and some bones. The new scans also referred back to my 2017 chest CT saying that the mass has grown significantly. You’re probably thinking “what, wait, did I miss something?”

Yeah, you heard me right – it was never mentioned in the radiologist report back in 2017 when it was Stage 1a and operable – and when statistically I had a better chance of a cure, or at a minimum, a much longer life. I was misdiagnosed. So off to my oncologist I went who gave me 6 months to a year to live (yes, I asked) and she ordered radiation and chemotherapy to start ASAP. At this point, knowing I’ve heard those three little words before (“you have cancer”), I had two ways to go – so to quote one of my all-time favorite movies, the Shawshank Redemption, either “I can get busy living or get busy dying” so I chose life!

By the grace of G-d she also did biomarker testing, and right before I was to start both chemo and radiation I found out that I had the EGFR mutation Exon 19 Deletion and was able to do a TKIs targeted therapy. So in April 2021 I started Tagrisso (which didn’t exist until only 6 years ago, awareness and research did that). Unfortunately, I still have the lung mass, but it has shrunken, and my five brain lesions and lymph nodes are NED so far. As far as my bone metastasis, I do what is called Zometa infusions to strengthen them from fracture. So the good news is I’m stable which we all know is a big win.

Video: Jeff talks about biomarkers

And if not for that simple chest X-ray – and dare I say, COVID – I might not have been here telling you my story. So, I continue, what I started from the time of my very first diagnosis in 2017 till today, to be an advocate to raise more awareness for testing and research, to find a cure and stop the stigma of this terrible disease called Lung Cancer. It can be silent and is the number one cancer killer. “If you have lungs, you can get lung cancer.”

At the Fight For Air Climb

I also urge new and previously diagnosed cancer patients, caregivers or anyone affected, to be proactive, to advocate for yourselves. Being quiet does not work. Push for more answers, push for more testing, get second opinions if you’re not getting the result. This is what I learned from my misdiagnoses and advocating. I also believe telling your story is very important; again, staying quiet doesn’t work. No, it’s not always easy, but others need to hear it and we need to tell it, for more awareness, to find cures for this number one killer. I am always available for all my sisters, brothers, caregivers or anyone who is touched by lung cancer.

Until then, stay strong but always positive.

Foundation honors Mark G. Kris, MD

NEW YORK, NY (April 2, 2024) – The Lung Cancer Research Foundation (LCRF) is pleased to announce Dr. Mark G. Kris as its honoree for the 3rd annual Evening of Innovation Gala, which will be held on September 24, 2024 at the Metropolitan Club in Manhattan. Members of LCRF’s Board of Directors and Gala Committee are committed to showcasing LCRF’s impact through recognition of an individual whose support of the organization and the field of lung cancer research is unparalleled, and someone who exemplifies the spirit of LCRF to improve the lives of persons with lung cancers through research.

As a thoracic oncologist at Memorial Sloan Kettering, Dr. Kris’s clinical and research accomplishments over the last four decades have transformed lung cancer care both nationally and internationally. He has played a prominent role in the discovery and use of chemotherapy and later targeted therapies matched to the genetic changes found in each person’s cancers. He was part of a small group of investigators that developed the medicines today given routinely to every patient to prevent nausea and vomiting. The lives touched by this effort are truly innumerable. Dr. Kris is a tireless patient advocate and a visionary. He strives to create “what comes next” to better treat and cure lung cancers. In addition to his other roles, he mentors young physicians who are today becoming the new leaders in the field.

Dr. Kris was a founder of The Lung Cancer Mutation Consortium (LCMC) in 2009. Fifteen years later, his leadership drives LCMC’s fourth iteration, the LEADER trial set to enroll 1000 persons with lung cancer before surgery at 20 institutions across the United States. This project supported by LCRF will open a new chapter in targeted therapy. Combining targeted therapies with surgery offers the best hope today to use precision medicine to lead to cures.

Dr. Kris’s impact at the Lung Cancer Research Foundation spans decades, beginning with an advisory role in Joan’s Legacy. He has been a vital member of the Scientific Advisory Board for over 10 years and played an essential role in building LCRF’s research program. His guidance to the founding members of LCRF has shaped its strategic trajectory. His leadership and direction empower LCRF to fund the brightest minds and make the biggest impact for patients. “The contributions to lung cancer treatment by Dr. Kris are innumerable,” remarked Aubrey Rhodes, Executive Director of LCRF. “He has relentlessly championed finding ways to improve his patients’ lives, both through research and  as a doctor. He has been an advisor and mentor to many and has contributed so much to the lung cancer community. It is only fitting that we honor him, and his impact, at the Evening of Innovation gala.”

Colleen Conner Ziegler, LCRF’s Board of Directors Chair commented: “He has not only provided his patients with excellent care throughout his career, but he has also pushed for research to do even better than we do today. He is a real champion for innovative research, and we’re pleased to honor him at this year’s gala event.”

“I’m humbled to be chosen for this honor,” said Dr. Kris. “The real champions are my patients, their loved ones, my nurse and physician colleagues who bring discoveries to our patients, and our  researchers in the laboratories. We look particularly to our scientists to discover the breakthroughs we need in the clinic.  I believe in the power of collaborative science, and that working together, facing head on these complex challenges, we will find a way to realize the dream to cure all person’s lung cancers. The first step to reach this goal is to believe that cure is possible for each patient. I ask you to dream with me. Thank you for the recognition of my work.”

The 2024 Evening of Innovation Gala will take place at 6 pm on Tuesday, September 24, 2024, at the Metropolitan Club in New York City. We will hear from the people whose lives Dr. Kris has touched during the event and provide attendees with opportunities to make their own impact on lung cancer research. More details can be found at LCRF.org/gala.

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About the Lung Cancer Research Foundation (LCRF)
The Lung Cancer Research Foundation® (LCRF) is the leading nonprofit organization focused on funding innovative, high-reward research with the potential to extend survival and improve quality of life for people with lung cancer. LCRF’s mission is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment, and cure of lung cancer. To date, LCRF has funded 419 research grants, totaling nearly $44 million, the highest amount provided by a nonprofit organization dedicated to funding lung cancer research. For more information about the LCRF grant program and funding opportunities, visit LCRF.org/research.

Contact:
Sheila Sullivan
Sr. Director, Marketing & Communications, LCRF
ssullivan@LCRF.org

March 30 is National Doctors’ Day, and once again we invited you to send thank you messages to the physicians who have made a difference in your life. Here are a few of the kudos you shared with your inspiring doctors!

Thank you to doctors everywhere who are using the results of lung cancer research to give their patients better, longer lives.

It’s never too late to support research in honor of your own doctor. Make your own tribute here.


To Mohamed Mohamed, MD,
Wesley Long Cancer Center
“Thank you, Dr. M, for taking this difficult journey with me, being sensitive to my needs, while still recommending the most effective treatments and encouraging me every step of the way. I am very grateful for your care.”


To Lecia Sequist, MD, Mass General Hospital and
Sarada Gurubhagavatula, MD, Summit Health
“I think of you often and want to thank you from the bottom of my heart for all that you did for Bill and me. After Bill was diagnosed with cancer, we were so fortunate to have found such kind, caring and dedicated doctors. From the moment we met you, we knew that we had come to the right place. As Bill would often say, you were not only amazing doctors but wonderful people. We both felt so much more at ease after we spoke to you, and we trusted all of the advice that you gave us. I know that if it had not been for you, we would not have had nearly as much time together. I can’t thank you enough for giving us the precious gift of time.”


To Brad Hiatt, DO, MercyOne Hospital
“I am so grateful to my oncologist, Dr. Brad Hiatt at MercyOne Hospital in Des Moine, IA! He’s the best..I was stage 4 lung cancer and I thought I was doomed! I began my fight in 2019 and my two tumors are in the dormant stage and I hope they stay that way! I will be 75 in June and almost 5 years ago since my cancer was diagnosed..I have wonderful doctors! Thank you, Dr. Hiatt and team! You are all a blessing!”


To Joshua Sabari, MD, NYU Langone
“Dr. Sabari is extremely knowledgeable about developments in the field and is very giving of his time even though he is super busy. Most important,  as a patient, he eases my worries and I know my care is top-notch.”


To Christina Mangiaracina, DO,
Delancy Medical Group, Penn Medicine
“Thank you for your commitment to early detection & intervention. I wish all doctors shared your dedication to patients and your understanding of lung cancer.”


To Alexander Drilon, MD, Memorial Sloan Kettering
“Thinking of you and JAMIE, and all of your staff on this day of thanking DOCTORS. Can’t tell you how much you all meant to us during my mom‘s treatment. We were blessed to have you all as our care team. We still miss her every day.”


“Thanks for what you did for my wife, Nita.”


“You gave my mother over 7 years of life with stage 4 using cancer. We worked to keep the virus away and you worked to stay ahead of all mutations. She died last January, NOT due to the cancer. Thank you for all your do!”


“There will never be enough words to express my gratitude for the care, compassion and dedication you have to your patients and improving lung cancer outcomes. I am blessed to have you and your staff as a part of my team and am grateful for your attentiveness, thoroughness and knowledge. Thank you for giving me hope! I feel like the lucky one to have you in my corner!”


To Catherine Shu, MD, Columbia University
“Super grateful for the care you provide me and others facing lung cancer. I am privileged to be your patient!”


To Jennifer Garst, MD, Duke University Medical Center 
“I am forever grateful for you. Your kindness, expertise and knowledge has gotten me through two lung cancers. I am so lucky that Dr. Garst and my surgeon, Dr. Tom D’Amico, are at DUMC. I am alive because of these physicians. Dr. Garst’s compassion and expertise has kept me grounded for the last 20 + years.”


To Ryan Brisson, MD, University of Florida
“Your dedication to the field of radiation oncology is such a blessing to our community! Thank you for your focus on reducing the toxicity of cancer treatment, allowing your patients to lead longer, fuller lives.”


To Matthew Gubens, MD, MS,
UCSF University of California San Francisco
“Thank you for all you’ve been doing and continue to do!”


To Heather Wakelee, MD,
Stanford Medicine Cancer Center
“Thank you for your excellent guidance and support.”

By Marley Coxe
March 2024

“Sure, I’m tired, I’m a mom – it comes with the job. We all have days we’re exhausted.”

“I just got over being pretty sick, so my lingering cough must be the illness leaving.”

“It’s the beginning of spring; allergies are in season.”

“This nausea must be my anxiety. My grandmother just passed away – I need to take the time to process and mourn.”

“I’m so out of breath – if I would get myself into better shape, these inclines wouldn’t be so hard to walk up.”

These were the excuses I told myself.

Marley with her boys

Looking back, my symptoms started around February last year. By April, I was avoiding steps, and hills made me want to cry. My son Kane’s baseball team always sat on the side of the field with the hill ­­– I dreaded it. When I went on the 1st grade class field trip, I was determined to make it up that hill to see the giraffe, even if I had to focus everything on my breathing. I had to get myself in better shape.

Nausea took over my entire day. My doctor and I believed I was experiencing acid reflux. I was prescribed two medications and went onto a strict anti-inflammatory diet to heal my stomach. I had an endoscopy scheduled for the end of June, which was the earliest they could get me on the schedule.

In the meantime, I started to feel it was more than acid reflux and fought with my doctor to listen. I was told: acid reflux is easy to treat, take your medication as prescribed, and change your diet. As usual, I felt embarrassed that I let myself get into this condition.

Getting a long-avoided test

I have a hemangioma on my liver and had put off getting an MRI since I knew it was just a strawberry mark. I didn’t feel like giving two hours of free time to lie in an MRI tube, so I had rescheduled that appointment so many times. I finally had the test, and I’m so glad I did.

The MRI took place after my acid reflux diagnosis and before my scheduled endoscopy. The MRI results showed my liver was fine. But the images showed enough of my left lung to indicate it had collapsed. Those results excited me. I wanted to scream, “I’m not crying wolf!”

The evening I received my MRI results, I was scheduled for a CT scan and lots of bloodwork. I didn’t think it was cancer. I truly believed I had an infection or maybe Covid.

Things moved pretty fast. The next afternoon – the second to last day before Kane would finish 1st grade – I was rocking my younger son, Reid, before nap time. I had an alert on my online chart that my CT results were in: “suspicion of lung cancer.” The rest of that day is a blur. I cried a lot. I cried to my family, my friends, my doctor, the nurses who called to set up my next appointments… I crumbled.

The biopsy to determine the exact type of cancer I had is where I met the pulmonologist, Dr. Ayers, a very knowledgeable and respectful doctor. Dr Ayers said he didn’t believe I had lung cancer – I was too young, too healthy. He told me he would biopsy the swollen lymph nodes in my chest and not sample the nodule in my lung.

My husband Colby, the kids, and I left for Wildwood, NJ. I knew I would be getting my biopsy results during our vacation. But again, I wasn’t worried. I truly believed that if it was cancer, it would be one that had the highest survival rates.

Day two of vacation, I was on the beach when my phone rang – it was Dr Ayers. He told me I had adenocarcinoma of the lung, how truly shocked he was, and how sorry he was to give me the diagnosis. I asked him what stage he thought the cancer was, and he explained it was at least stage 3 – and it was going to be a tough battle. I don’t remember what else he said on that phone call.

My PET scan showed my cancer had metastasized to the lymph nodes in my chest, axillary, and near my kidneys. Fluid drained from my lungs also held cancer cells. I was diagnosed with ALK positive stage 4 non-small cell lung cancer.

Combating the fear

The fear and sadness I feel is combated by the love and support I’ve been shown since diagnosis. My husband, my family, and my friends have all shown me such care. Cancer has taught me the importance of being present. My future probably doesn’t include becoming old and gray, and I’m not sure I’ll get to hold my grandchildren one day. But I’m here now – and my goals are to see the milestones in my boys’ lives.

Medicine is forever evolving, and I have so much hope that this cancer can be made into a chronic disease one day. Every 3 months, I have scans of my cancerous spots. I’ve never wanted to be called unremarkable and boring more than when those results come through! Living with lung cancer involves lots of hope and a ton of prayer.

The good news
The FDA recently approved Osimertinib combined with chemotherapy for the initial treatment of advanced EGFR-mutated non-small cell lung cancer (NSCLC) based on the results of the FLAURA2 trial.

Why it’s important
Osimertinib, which is a newer generation oral inhibitor of EGFR, has improved the treatment of EGFR-mutated lung cancer but unfortunately it is not curative for most patients. FLAURA2 was a large, international trial that treated over five hundred patients with advanced EGFR-mutated NSCLC with Osimertinib alone or combined with chemotherapy. The patients treated with Osimertinib and chemotherapy had an 8-month significant improvement in control of their cancer (New England Journal of Medicine, Volume 389, pages 1935-48). The combination therapy also had more benefit in patients who had brain metastases at their first diagnosis. The treatment was also able to delay the spread of cancer to the brain in patients who did not initially have brain metastases (Journal of Clinical Oncology, Volume 42, pages 808-20).

What it means for patients
This represents the first trial to show a benefit for patients with EGFR-mutated NSCLC treated with the combination of Osimertinib and chemotherapy. Even though there was an improvement in control of the cancer the results of the trial are still early, and it is unclear whether this improvement will result in patients living longer. The combination treatment did have more side effects primarily related to the chemotherapy. This approach to treatment may not be for every patient. Treatment options and their potential risks and benefits should always be discussed with one’s physician.

What to watch for
As the results of the FLAURA2 trial mature, physicians should have a better idea as to which patients will benefit from this approach to treatment. This continues to be an active area for research and physicians/scientists are actively trying to improve outcomes through understanding the biology of lung cancer and developing novel approaches to treatment.

Read more about the FDA approval here

During our March #TogetherSeparately livestream, Stephen V. Liu, MD, Director of Thoracic Oncology and Head of Developmental Therapeutics, Georgetown University, gave an overview of the topics discussed during February’s IASLC Targeted Therapies Meeting. Isabel Preeshagul, DO, MBS, moderated the discussion. Watch the recording below.

Three grants funded by Daiichi Sankyo and AstraZeneca to study HER2 directed and TROP2 directed antibody drug conjugates (ADCs)

NEW YORK, NY (March 12, 2024) – The Lung Cancer Research Foundation (LCRF) has announced three research grant awards funded by Daiichi Sankyo and AstraZeneca, totaling $810,000, focused on further developing the understanding of the proposed mechanism of action of antibody drug conjugates (ADCs), exploring biomarkers and blood-based biomarkers for the primary and acquired resistance mechanisms to TROP2- or HER2-directed ADCs, and exploring the use of ADCs in lung cancer types beyond non-small cell lung cancer (NSCLC).

ADCs are designed to specifically target cancer cells and selectively deliver a highly potent payload, which may limit damage to healthy cells. An ADC comprises a monoclonal antibody that recognizes a protein present on the cancer cells, and is bound to a cytotoxic agent, known as the payload.

The use of ADCs is common practice in several cancers, and currently, multiple phase 3 trials of ADCs in NSCLC are underway.

“LCRF is honored to continue its long legacy of identifying and supporting outstanding lung cancer research projects over the years, and we are excited to present these grants made possible by this research collaboration,” said Dr. Antoinette Wozniak, LCRF’s chief scientific officer. “The study of ADCs is an exciting development in lung cancer research with considerable promise for increased positive outcomes for patients.”

2023 LCRF – Daiichi Sankyo – AstraZeneca Research Grant on Antibody Drug Conjugates award recipients include:

  • Aakash Desai, MD, MPH, University of Alabama at Birmingham
    Deciphering the ADC code: a proteogenomic quest in lung cancer
  • Carl Gay, MD, PhD, University of Texas, MD Anderson Cancer Center
    Pulmonary high-grade neuroendocrine carcinomas as indications for antibody drug conjugates targeting TROP2 and HER2
  • Nan Sethakorn, MD, PhD, Loyola University of Chicago
    Leveraging liquid biopsy to identify the optimal clinical niche for TROP2-targeting in NSCLC

To learn more about LCRF and its grants program, visit LCRF.org

# # #

About the Lung Cancer Research Foundation (LCRF)
The Lung Cancer Research Foundation® (LCRF) is the leading nonprofit organization focused on funding innovative, high-reward research with the potential to extend survival and improve quality of life for people with lung cancer. LCRF’s mission is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment, and cure of lung cancer. To date, LCRF has funded 418 research grants, totaling nearly $44 million, the highest amount provided by a nonprofit organization dedicated to funding lung cancer research. For more information, visit LCRF.org.

On March 5, recipients of the 2022 LCRF and EGFR Resisters Research Grant on EGFR-Driven Lung Cancer provided an informative update on their research projects.

Ivy Elkins and Jill Feldman from EGFR Resisters hosted speakers Jonathan Ostrem, MD, PhD, University of California, San Francisco; Swarnali Acharyya, PhD, Columbia University Medical Center; and Luke Hoeppner, PhD, University of Minnesota, Twin Cities.

Watch the replay below.

Xavier in uniform

All Xavier Sanders wanted to do was to serve.

“For 14 years, I have been all around the world serving my country on the U.S. Air Force. I’m a dad. A husband. A brother. I’m a son – all of those things. And currently I am fighting stage 4 lung cancer.”

In 2020, Xavier contracted Covid and was off flying status for longer than expected. A physical revealed a spot on his lung, but it wasn’t a concern until about three months later when it had doubled in size. “That’s when all the red flags started going off,” he said.

Xavier had a biopsy in July 2022. “The biopsy went from pretty much, ‘let’s get this spot out of here’ to ‘oh no, there’s a lot of cancer.’” All of the 15 lymph nodes biopsied were cancerous. The cancer has since spread to Xavier’s liver, and weeks ago, he was told he had 20 to 30 tumors in his brain.

“When I got this surgery, the surgeon was like, there’s no way you’re this young and your lungs look that bad. You had to go somewhere to get this – the only way I’ve seen things like this is from 80-year-old men who have been working in factories their whole lives and smoking a pack of cigarettes every day. But I think of all the deployments, all the burn pit exposures that I’ve had, all the things that we burned, all the hazards and chemicals.”

Although Xavier has a very supportive command team, he is concerned for his fellow service members. The military covers most health care expenses but focuses more on the short term – getting people back in to service – than long term outcomes.

“My fear is that there are other service members out there who are dealing with the same thing, and just don’t know how to voice it, or just don’t have the avenues, or just don’t have the resources to reach out. And that’s kind of where I take this fight kind of personally, almost because I don’t want any other service member to experience what I have – waiting for scans or being told, ‘oh, it’s not a big deal,’ or just sitting around and waiting, because a lot of it was just speculation. The first doctor that I went to told me my spot was from some red clay that I grew up from Tennessee, and that couldn’t have been further from the truth.”

Xavier spent a lot of time trying to be okay because he had worked hard for his career and appreciated all the opportunities the Air Force had given him. Sharing his story publicly has given him an avenue to support service members in similar situations.

“A lot of my health care is taken care of because I’m still active duty. But the younger airmen, the younger service members don’t know where to find resources. They don’t know who to talk to. They don’t know what to expect.”

The importance of caregivers

Xavier with Chelsea

Xavier’s wife, Chelsea, has been a source of strength for him. “When I’m out of it, she’s the one in the meeting – she’s the one asking the questions. Caregiver support is huge, because having resources means she can verbalize things on my behalf. A lot of veterans don’t have that, or their caregivers don’t know where to start.”

Chelsea notes that a service member’s ability to endure can mask the pain he or she is experiencing. “I think people have a stereotypical cancer patient in their mind, and they can become insensitive or dismissive when someone doesn’t fit the stereotype.”

She noted that important symptoms may have been missed because of those assumptions. “Because Xavier walked in with a smile, they would assume that things were okay, but they didn’t know or ask. You know who got him dressed? Can he be left home alone? They wouldn’t ask those questions.”

“There probably needs to be more conversation around mental toughness, and how sometimes that’s a barrier to receiving the care you need,” she said.

Xavier sees more gaps in health care than there should be. “We should have help everywhere, because cancer is everywhere. People all over the world, having the same problems, having the same symptoms and experiencing the same things.”

“Cancer can be deadly, but that does not mean it’s a death sentence. Every day we get a new day to fight. There’s more than one way to be seen and be heard, and we just have to step out there and be brave – because at the end of the day we’re fighting for our lives. We’ve already signed a blank check, and the blank check is being cashed right now, and we can’t afford to just sit and just let it continue to be cashed over and over again at the expense of our lives. I want to change the narrative. I want to make a positive change and an impact.”

“Being in the military is already hard with everything that we go through with the sacrifices, and the coming and going, and all the things that come with being in the military. We need to do things in our society and our culture, especially in this realm, where we can make it easier for each other. It’s got to start somewhere, and I’m ready to start it.”


Trillionaires Only

When Xavier was recovering from lung cancer surgery, he and his supporters created a clothing brand, Trillionaires Only. His hope is to share his message and his cancer journey with the world and to show that whether you’re facing your toughest battle or chasing your biggest dream, you must always be authentic, resilient, and ambitious.

Learn more at trillionairesonly.net.

Good news for veterans

On Feb. 26, the Veterans Administration announced that all veterans exposed to toxins and other hazards while serving in the military will be eligible to enroll directly in VA health care beginning March 5, 2024. Those veterans will be eligible to enroll directly in VA health care without first applying for VA benefits.

This expansion of VA health care eliminates the phased-in approach called for by the PACT Act — meaning that millions of veterans are becoming eligible for VA health care up to eight years earlier than written into law.

Read more here.

February 2024

Julie with her husband, Chris

My lung cancer story began with a mammogram in February 2022. I was 42 years old, and it was my second one ever. All was well except for a calcified blood vessel, which they now flag as a potential sign of atherosclerosis. When I went in for my physical, my doctor noted this and, out of an abundance of caution, ordered a calcium score heart scan, and inexpensive CT scan. The scan resulted in me being put on a statin and revealed a 3 cm lung mass. I was so surprised by both of these things that I wasn’t even that worried the first month, certain they must have mixed up the scans! The next month, we got a chest CT with more detail, and it was still there. The radiologist report said “certainly, this may be adomatous.” I started to worry.

I was referred to a pulmonologist, who pulled up my scan and said that it did not look like Covid and most certainly was not supposed to be there. He asked me about risk factors and symptoms, which I had none of, and he had to note second hand smoke from my grandfather, which was barely the case, so that he could justify follow up. He ordered an emergency PET scan and a bronchoscopy. He told me that he didn’t think this mass would have shown up on a regular x-ray. The PET scan showed only the one mass, lighting up a little bit but not too much. It was a huge relief to know that nothing else was lighting up, but he confirmed that it should not be lighting up at all. Unfortunately, the mass was in a very difficult spot near blood vessels and close to my heart in my left lung, and he was not able to reach it for biopsy during the bronchoscopy. I was very disappointed to still not know for sure what was going on, but I understood that this was for my own safety. I was of course searching online for every single word in every report and getting into support groups for advice. This was actually a time that I needed support groups the most – before diagnosis but after the discovery of the mass.

Robotics for diagnosis

Someone in a support group suggested a robotic bronchoscopy, which makes it possible to reach tough-to-get spots. The other medical group in my area came up when I searched, so I made an appointment for a second opinion with a doctor in their group in hopes that I could get referred to the robotic team. Unfortunately, despite my going in person and signing forms weeks in advance, that doctor did not receive any imaging and only had the written reports. He seemed completely unconcerned and said “some people die with masses like these, not of them.” I said, “Are those people 42 years old?”

Weeks later, after I got another follow up CT to check for progression, he called me out of the blue, quite concerned. He had finally received the imaging, and he wanted to make sure he corrected the original impression he had given me. He told me he didn’t want to scare me but that it definitely looked suspicious. I told him I was already scared and had already requested a surgical consult because I was not comfortable with watching and waiting for a lung mass to prove it was cancer by growing. He seemed relieved. The original pulmonologist had also seemed relieved when I requested a surgical consult. I later thought that perhaps the doctors are instructed to follow a certain protocol – a flow chart – even if their intuition is telling them something different sometimes. Because patient preference can be a part of that protocol, my saying I wanted to talk to a surgeon was all it took to unlock that next step. There was no coordinator through this process trying to get a diagnosis. It was just me being persistent. I thought often about patients who are very busy with work or who do not wish to read as much about medical possibilities as I do.

When I visited the surgeon, he walked in the door and told me my whole story from the mammogram so that I did not have to repeat my story to him. I was immediately impressed. He referred me to a doctor about 1-2 hours away with a lot of experience in robotic bronchoscopy if I wanted to confirm diagnosis but also told me he was completely on board with removing the mass regardless because even benign masses can grow and cause issues. We decided to do it so we could be sure before major surgery. Being in a different town and a different medical group was a bit strange and made me more grateful for the care I had received to that point, even though it required my persistence and advocating for myself. However, the doctor himself was very experienced with the robotic bronch and got a successful biopsy. He was able to tell under the microscope in the room what it was and told my husband that it was indeed cancer. I did not know (or didn’t remember due to the drugs), and I remember a nurse asking me how they found the mass. They way she was talking to me told me right away that they had confirmed cancer. That was in August 2022. Strangely, this felt like a bit of relief because I finally knew for sure what it was and could confidently go ahead with surgery.

‘Cancer is not usually a great conversation starter’

I am the first person in my family to have cancer other than basal cell skin cancer. It was very surreal and unbelievable – it still is. I realized that I had no idea if I should tell other people or if I wanted to, and I also felt aware that it was such a heavy topic that it sometimes almost seemed unkind to tell someone about it. Cancer is not usually a great conversation starter. I gradually found that the more people I told, the more it helped me accept it as fact, and I felt supported and understood by those who were willing to talk about it with me and let me tell my story.

I had two friends who have had hard fights with breast cancer reach out right away with calls and gifts and cards. My sister – a medical writer with a background in pharmaceutical development – would get into the weeds with me and read the medical papers and research to decide what to do next, and I felt very supported by that. Many people sent cards and brought food while my husband was trying to handle the kids alone (even though he is normally our chef, that’s a lot harder when you are doing everything else!). My husband and I cried together a few times, and being able to just let out that fear mixed with a little bit of relief of dodging a bigger bullet. The No Surprises Act was passed not long before my surgery, and when I called my insurance and found out that I would not pay anything out of pocket for my surgery, I unexpectedly burst into tears.

When we told the kids, we assured them that it was caught early and that I would be okay, and they seemed to take it in stride. The surgeon told me very confidently that I was early stage and that surgery could cure me. While I appreciated his optimism, I also was very skeptical of this point of view. Lung cancer is quite an a-hole, and I still do not feel comfortable with the word “cure.” As much as I appreciated him, I felt more doubtful about follow up. He performed a lower left lobectomy in September 2022. It was a 3cm mass with about 9mm negative margins. Visceral pleural invasion was present, and so I am stage 1B.

I was only in the hospital for about 24 hours. They had me up and walking quickly. Even though it was hard and painful, I knew it was important. They removed the chest tube not even 24 hours after surgery, and I was sent home with only one night in the hospital. There were travel nurses who were just meeting each other, and while they did give me a pillow that people could sign, there was no one to sign it.

I developed a really annoying cough while recovering at home and couldn’t even speak for days because of it. We later learned that they had removed the chest tube too soon, and I had pleural effusion. I had to eventually have it drained in January at another provider. Recovery was otherwise not too bad – I did use a recliner for sleeping and walked as much as possible. There were nights, however, when I would search online for stories of survivors of lung cancer, and I would repeatedly come up empty. I found many stories of people like me who didn’t catch it in time or had recurrence. I had to tell myself that the people who survived didn’t need the support anymore or have a reason to speak out, so they were living their lives. I decided that for as long as I could, I would stay in support groups and tell this story so that people would be able to find a happy ending when they search at night.

I had a follow up about a month or two after surgery, and they said they would do CT scans every 6 months for follow up but that I otherwise did not qualify for any adjuvant therapy. I asked for an oncologist referral, and she shared the biomarker results with me. However, she misinterpreted the results and thought that the EGFR genetic mutation was only eligible for targeted therapy if it was L858R. I was exon 19 del. She also seemed to think that the targeted therapies listed on the report were in order of efficacy when they were actually just in alphabetical order. My sister helped me review the data and confirmed that I should get a second opinion and try to find an EGFR specialist. I am very grateful for the care I now receive at the Duke Cancer Center.

I was placed on Tagrisso (osimertinib) as targeted therapy to help hold back any potential microscopic cells still roaming around. I receive CT chest and abdomen scans with blood work every 3 months and MRI every 6 months. I believe the trial protocol for Tagrisso in people of my stage is 3 years, so I don’t know what will happen in 2025. I would feel more comfortable if I could stay on it 5 years.

When I was first diagnosed, I wish I had known how important and necessary second opinions are. You are not a hypochondriac if you are learning about your disease online – you are a warrior becoming an expert on the specific markers and aspects of what’s going on in your body, and that level of expertise is a strong asset when consulting with doctors. I wish I had known about the funding deficits despite being the most deadly cancer so that I could have advocated for lung cancer awareness and funding more when I was spending more time in medical facilities.

In November, for Lung Cancer Awareness Month, I decided to raise funds for research by having a Cancerversary party. People with lung cancer deserve more happy endings, and research will get us there.