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Survivor Stories

RET positive lung cancer research

Ilana Stromberg

In the fall of 2019, Ilana 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?”

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Brittany Hawkins RET positive lung cancer survivor

Brittany Hawkins

With her only symptom being a persistent cough, 36-year-old Brittany Hawkins suffered a stroke and was subsequently diagnosed with Stage IV lung cancer in July 2021. At the time of diagnosis, the aggressive disease had already impacted both lungs, bones and lymphatic system. She was given a devastating 3-6 month prognosis but her oncologist refused to give up and quickly discovered the targeted RET+ mutation.

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Andrea Redway RET positive lung cancer survivor

Andrea Redway

In 2015 at 47 years old, Andrea Redway could never have imagined that she would be diagnosed with Stage 4 lung cancer that had already spread to her brain, bones and adrenal gland. The news was devastating for Andrea and her family. Access to new treatments and biomarker testing have made all of the difference. Today, Andrea is living a full life with her family.

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RET positive lung cancer research

Mom's Story: Ilana Stromberg

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 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.

Brittany Hawkins RET positive lung cancer survivor

Brittany Hawkins

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.

Andrea Redway RET positive lung cancer survivor

Andrea Redway

At 47 years old, busy with her life with her husband and two young children, and her work as a lawyer on international justice reform projects, Andrea never dreamed that the cough she developed in the winter of 2015 was anything serious. However, after returning from a trip to Vietnam in April 2015, Andrea developed more concerning symptoms (extreme fatigue, abdominal pains, aching in her leg, episodes of blurred vision). After initially being treated for pneumonia, then undergoing more tests, Andrea and her family were completely blindsided with her diagnosis a few weeks later of stage 4 lung cancer. Andrea has no known risk factors for lung cancer.

The first year after Andrea’s diagnosis was extremely difficult – in addition to a 6 cm tumor in her left lower lobe, cancer had spread to her brain, bones, adrenal gland and there were early signs on her colon. She also had a blood clot pressing on her pulmonary vein.

Andrea’s hospital in Ottawa was only testing for a limited number of mutations at the time: EGFR, ALK and BRAF. If Andrea had one of those mutations in her tumor she would have been eligible for one of the new targeted therapy treatments for lung cancer which target specific gene mutations, but tests for those mutations were negative and so she commenced the standard first line treatment of chemotherapy.

Andrea also followed her oncologist’s suggestion to send samples of her tumor to Foundation One (at her own cost) for further biomarker testing. The results of that report revealed that she has both PDL1 amplification and the RET mutation. At the time there were limited treatment options for RET.

After six weeks of chemotherapy and some radiation to her right hip bone, Andrea only had a partial response and was feeling worse and worse. Luckily, some promising clinical trial results had just been published on a new treatment for advanced lung cancer: immunotherapy.  She managed to have one dose of immunotherapy before needing emergency surgery for a perforated bowel.  After a few weeks of recovering from that further setback, she was able to continue the immunotherapy treatments.  About 8 months later, scans revealed that the cancer outside Andrea’s lungs was gone and the primary tumor had shrunk to almost half its original size. It was a miraculous result for Andrea and her family.

Andrea was on immunotherapy for two years and continued to remain stable or improve. Due to accumulated side effects, and in consultation with her oncologist, Andrea stopped treatments in September 2017. She remained well and stable for another 3.5 years, but in early 2021 had a small amount of progression in the lymph nodes in her chest and so resumed immunotherapy treatments. She is continuing with those treatments today and is doing well.

Andrea and her family have tried to live life to the fullest since her cancer started to improve. They have been on many great family adventures together (New York City, Tofino and the Gulf Islands, Nova Scotia and Newfoundland, Belize), adopted a puppy and bought, then fully renovated, a century home.

While Andrea is grateful that she has responded so well to immunotherapy treatments, she knows firsthand how tenuous life is and that everything can change in an instant. Knowing that Andrea has the RET mutation provides invaluable insight into future possible treatment options Andrea may access and helps ground her family in hope for the future.  Research matters. It has already given Andrea and her family many additional years together. Andrea hopes that research will extend that same opportunity to many more cancer patients, with even more far reaching results.

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