Stories of Hope

From Diagnosis to Triumph: An Interview with Jeff Smith on His Journey with RET-Positive Lung Cancer

The Happy Lungs Project sat down with Jeff Smith, a RET-positive lung cancer survivor from Henderson, NV. This is his story.

Happy Lungs co-founder Ilana Stromberg met Jeff after she saw a video of his story in a Facebook Group. The fact that Ilana saw the post at all was a miracle because, at the time, she did not spend much time on social media. Since then, Jeff, Tina, and Ilana have built a beautiful friendship and helped each other through some tough moments. It’s one of the silver linings of a shared diagnosis! We are grateful that Jeff shared his story with us and invite you to read it below.

Happy Lungs: Can you start by telling us your name and where you live?

Jeff Smith: My name is Jeff Smith, I live in Henderson, NV, and I am a RET-positive lung cancer survivor. I was diagnosed with RET-positive lung cancer in 2020 after being misdiagnosed for several months.

Happy Lungs: What were some of the most helpful resources or support systems you found during your treatment journey?

Jeff: My family and friends were incredibly supportive. The Happy Lungs Project connected me with online groups where I heard inspiring stories from lung cancer survivors. Although there weren’t many stories specific to RET-positive lung cancer, hearing about others’ journeys gave me the hope I needed.

It reminded me that all is not lost when diagnosed with cancer. I focused on the number of people alive rather than daunting statistics.

Happy Lungs: How did you maintain a positive mindset and stay motivated throughout your treatment?

Jeff: No one is always positive; it’s not realistic. When I was first diagnosed, I tried to take everything as it came. Statistics are just numbers. I focused on doing what I could each day. Faith, mindset, and mental strength aren’t accounted for in statistics. I approached treatments with the mindset that I was going to win.

One particularly memorable moment was when I was finally correctly diagnosed after multiple misdiagnoses. I was in the parking lot of the oncology clinic, feeling nervous after a PET scan. The song “Miracles” was playing on the radio, which gave me a lot of hope. I keep a photo of that moment on my bathroom mirror as a reminder.

Happy Lungs: What advice would you give to someone who has just been diagnosed with cancer and is feeling overwhelmed?

Jeff:

• Focus on the present moment. Do what you can do in each moment of each day.
• If you’re fortunate enough to have family around you, give them a hug and lean on them for support.
• Remember that there are people who have made it through this, and there’s no reason to think you won’t be one of them.
• Take care of yourself and give your treatment the best chance of working. Stay active, even if it’s just walking across the room. Do as much movement as you can manage. Walking around the block a few times helped with my nausea and energy levels.

Happy Lungs: How has your experience with cancer changed your outlook on life and influenced your future goals and aspirations?

Jeff: Cancer has changed me profoundly. Gratitude is now a big part of my life. For most of my life, I was a weightlifter, but I couldn’t lift weights during treatment. Now I trail run, and every time I run, I stop at a special spot, place a hand on each pole, and bow my head in gratitude for my ability to run.

When I started chemo, I was told I had three months to live. I thought about it as having 100 days left and decided to make each day count. I slept outside to watch the sunrises, appreciating every moment.

Happy Lungs: Is there anything else you’d like to share with others going through a similar journey?

Jeff: There is always hope. There are others who have been where you are and are alive today. If they can do it, you can too. Be proactive about your care, seek second opinions, and take control of your health. Your journey is your own, and you have the strength to make it through.

Brittany Hawkins and Her Journey with RET-Positive Lung Cancer

In early April 2021, I developed a persistent cough. Being from Kentucky where seasonal allergies are rampant and during the height of the COVID-19 pandemic, I decided to err on the side of caution and visit my Primary Care Physician. We did our due diligence, testing for all the major viruses and treating it with steroids but after 6 weeks, several new symptoms and no improvement, it was time for a chest x-ray. I had developed shortness of breath that was keeping me from being able to stand and sing at church, climb the stairs in my home and wash my face in the shower. I also began having what we were calling at the time, ocular migraines.

I had the chest x-ray in June and within a couple of hours received a call from my PCP. “Something isn’t right, I’m sending you to pulmonology.” As a healthy, 36-year-old with no history of respiratory problems, I was only slightly concerned. In mid-July I met the pulmonologist in his office. He ordered a chest CT to be done the very next day. Within an hour of the test, he called and said, “I believe you have MAC infection; I’d like to do a bronchoscopy this coming week to confirm.” I had no idea what that meant but a quick Google search had my mind racing. It felt like the worst possible news.

The worst news, however, came just a week later.

Three days after receiving that call, I suffered a stroke. After 5 days in the hospital, a barrage of tests and a stumped medical team, the same pulmonologist who had suspected MAC infection came into my hospital room with tears in his eyes to deliver what was the worst possible news – my diagnosis of Lung Cancer.

The next 6 weeks were a whirlwind. I endured, as all newly diagnosed cancer patients do, an onslaught of tests, pokes, prods, appointments, and difficult conversations. It was discovered that the shortness of breath and cough were, of course, related to the mass that spread in my lungs. The “ocular migraines” were mini strokes that had been caused by blood pooling behind my heart and had led to the TIA that stopped me in my tracks. I went on to suffer two more blood clots before finding an anticoagulation regimen that worked.

My oncologist, Dr. Adam Lye at Norton Cancer Institute, has since described my condition as a “runaway freight train.” The PET scan showed cancer in the lungs, bones and additional lymphatic spread. While he was insistent that I had to have some type of mutation driver because of my age and tobacco naïve status. He was also concerned we were running out of time. The liquid biopsy had not shown any mutations and the bone biopsy from the metastasis in my hip also come back without news. Determined that the mutation had to be there, Dr. Lye ordered one final biopsy of the mothership tumor in the left lung.

In the meantime, I did a combo round of chemotherapy & immunotherapy. Two days after that infusion, I came down with COVID-19 and ended up hospitalized due to severe lung inflammation. My pulmonologist has since said that when I went in the hospital in August, he did not expect me to come out. The cancer, chemo, COVID combo should have killed me. But my story was not over.

The day before my second scheduled infusion, Dr. Lye called with extreme excitement in his voice. “We found it! Your biopsy came back w/ a RET+ KIF5B mutation. This makes up less than 2% of NSCLC patients but there are currently 2 FDA-approved drugs for your specific condition. I’m going to start you on Pralsetnib right away.”

I have been joyfully taking my TKI every day since September 12th. There have continued to be bumps in the road as my body adjusts to this new normal but because of research and those that have advocated before me, I was able to celebrate Christmas with my family. Someday the medicine may stop working and the aggressive disease that is currently lying dormant in my lungs could come roaring back. But I live with the hope that research will continue and there will be advances made in my lifetime that can turn the death sentence of RET+ lung cancer into just another chronic condition.

 

Ilana Stromberg and Her Journey with RET-Positive Lung Cancer

Cancer is indiscriminate; it can strike anyone at any time. It is insidious and destructive. The diagnosis of lung cancer is particularly horrifying for a “healthy” non-smoker, and return to health may seem unattainable. However, many things look impossible, until they are conquered. Today, we are on a journey to beat Non-Small Cell Lung Cancer.

In the fall of 2019, Ilana, a mother of 5, was diagnosed with stage 2 Non-Small Cell Lung Cancer. With no prior risk or known genetic or environmental factors, her cancer just appeared. She was active, “healthy” and happy. Being sick seemed completely impossible. She said herself, “How can I be sick while I feel so healthy?” Unfortunately, patients like Ilana are surprisingly common. Lung cancer is the second most common cancer diagnosed in the United States (1 in 16 people), and the leading cause of cancer deaths. Due to a lack of funding and research, lung cancer occurs half as often as breast cancer, but is twice as lethal.

Within weeks of diagnosis, Ilana had 20% of her right lung surgically removed and thankfully, her tumor was sent for genetic sequencing. This allowed us to learn the underlying cause of her cancer and open up potentially life-saving treatment options. Ilana recovered from surgery with unbelievable speed and grace, but unfortunately, the surgery revealed that the cancer had spread to two lymph nodes, so 5 weeks after surgery, Ilana began chemotherapy.

The chemotherapy was a bit more taxing. She was tired and nauseous, although always strong for her three youngest kids. Never once did she complain. Every mention of side-effects was immediately met with, “I’m so grateful I feel bad because it means the chemo is working [killing the cancer cells] and I’ll be better soon”. Ilana’s tenacity and optimism were inspiring and her treatments appeared to be working. She completed four rounds of chemotherapy, recovering strength and appetite a little slower after each one, but maintaining her determination and resilience. Her doctors hoped for a cure due to early detection, successful surgery, and the aggressive chemotherapy regimen.

The next year was spent enjoying time together and sending good vibes into the universe before each surveillance scan. Her 3-month, 6-month, and 9-month scans were “stable”. Best word ever! The further she got away from her initial diagnosis, the less likely a recurrence. Ilana ran and exercised almost daily, cut all added sugar out of her diet, and did everything in her power to remain cancer-free. She was determined to stay healthy.

Then came her one-year scan. Something lit up on her liver. Following a biopsy, we learned that her cancer was pretty set on sticking around. It was back and officially labeled “metastatic”. But even this dreaded news couldn’t dampen Ilana’s buoyancy. She was more committed than ever to beating the cancer. Surgery was quickly scheduled and 50% -60% of Ilana’s liver was removed. Following a brief recovery period, she began taking Retevmo (Selpercatinib), a novel RET Inhibitor that was only an option because of the early genetic sequencing and discovery of the RET alteration. Within weeks, a brain MRI discovered a solitary brain metastasis, which was successfully treated with Gamma Knife radiation. We are so grateful for Ilana’s amazing doctors, and their state-of-the-art protocols and treatments.

At the time of Ilana’s original diagnosis, there was no FDA approved efficacious drug for treating RET driven non-small cell lung cancer; the second time around, Selpercatinib had just been approved by the FDA. This treatment deactivates the product of the genetic abnormality specific to her tumor that drives the cancer’s abnormal growth. Ilana’s drugs are nothing short of miraculous: they demonstrate high efficacy, even on lesions in the brain – a very common metastasis for patients with lung cancer, and one that is difficult to treat using traditional methods.

Ilana’s surgeon told her that without this medication, she would have been inoperable! In just one year, Ilana’s treatment options expanded dramatically due to her doctor’s thorough work-up and cutting edge research. Selpercatinib boasts between 85-90% efficacy for managing and even shrinking further cancer growth. Despite such promising results, there’s still a long way to go. Unfortunately, many patients taking targeted cancer treatments develop resistance to the drugs. This means that these drugs are not a cure, and at this time there is no proven treatment to combat resistance.

That’s why we started The Happy Lungs Project. With your help we can raise the money necessary to fund critical research into drug resistance mechanisms and other dependable therapies, spread information about early tumor sequencing and help hundreds of thousands of people like Ilana live with lung cancer, so that one day, they can live without it.

Watch Ilana’s story through a series of videos and discover more about her life and journey with lung cancer and promising new treatment.