Libby’s Story

In Loving Memory of Elizabeth Shelly de Jong

July 30, 1969 - July 3, 2023

On September 16, 2016, Elizabeth’s life took a sharp turn. A few months of hip and leg pain culminated in her femur breaking due to two previously unknown tumors. These tumors, along with one in her lung, two in her lymph nodes, and a brain lesion, led Libby to Hillman Cancer Center at the University of Pittsburgh. Following nearly a week of tests, including X-rays, CT scans, MRIs, and a bronchoscopy, Elizabeth received the devastating diagnosis of stage IV non-small cell lung cancer. To say Elizabeth and her loved ones were shocked is an understatement—Elizabeth had no risk factors and showed no symptoms of lung cancer. 

While healing from her femur repair surgery and beginning radiation treatments for her leg and brain lesion, Libby received news from genomic testing of her tumor materials. She had hit the “jackpot” of NSCLC—ALK, non-small cell lung cancer with the anaplastic lymphoma kinase mutation. This mutation is found in fewer than 5% of all NSCLC cases, but extensive research has opened a window of promising treatment opportunities known as “TKIs” (tyrosine kinase inhibitors). To put it simply, these TKIs act like a “pause button” for her cancer cells. Elizabeth took Alecensa® (alectinib) for over five years.

Although scans in the years since her diagnosis revealed new tumors in her brain (in 2018, 2019, and 2020), they were fortunately caught early. The excellent team at UPMC Hillman immediately sprang into action. In January of 2022, another challenge arose as Elizabeth faced a tumor in her distal femur, likely related to the original femoral tumors. Frustratingly, in July 2022, several new tumors were discovered, prompting another round of tests to determine the next steps for her treatment plan, all while undergoing radiation treatments to her spine. In August, she began taking Lobrena® (lorlatinib), a third-generation TKI. This journey had been like a roller-coaster ride, but throughout it all, Elizabeth remained optimistic.

October and November of 2022 brought on new challenges in this tumultuous lung cancer journey. At the beginning of October, after a lovely family birthday party for Libby’s mother-in-law, she had to visit The Outer Banks Hospital’s emergency room due to increased back pain. It turned out that she had fractured one of the vertebrae that had been radiated over the summer. Elizabeth’s team at Hillman was immediately informed, and her family and friends were immensely grateful that she was scheduled for a PET scan in early November.

At the end of October, Elizabeth was hospitalized for five days for pneumonitis, a condition characterized by lung swelling. This condition may have been caused by either the radiation or the new medication she started in August. During her hospital stay, various tests and scans were conducted, revealing disease progression throughout her spine, left pelvis, femur, both scapulae, humeri, skull, and liver. Libby was fortunate that she could complete radiation treatment on her spine and pelvis while she was hospitalized. The Monday after her release, in addition to undergoing a PET scan, she began traditional Triplet chemotherapy, aiming to start knocking out the cancer. A blood biopsy was also conducted to determine any new mutations or resistance mechanisms that might enable more targeted therapies and treatments.

While awaiting those test results and with her next chemo session scheduled for right after Thanksgiving in 2022, Elizabeth focused on managing the side effects of chemo, primarily fatigue. However, just a week after her first chemo session, she experienced severe intestinal issues that sent her back to the emergency room, leading to another five days in the hospital for treatment. These two hospital stays and two rounds of chemo, coupled with the challenges and pain of bone progression, took a toll on her stamina, energy, and positive mindset.

The good news in all of this was that the blood biopsy revealed a MET amplification alongside the ALK+ mutation. Shortly before Christmas, Elizabeth resumed the ALK inhibitor, Lobrena® (lorlatinib), and introduced a MET inhibitor, Tabrecta® (capmatinib). This served as proof that research was of paramount importance, significantly benefiting patients by allowing them to explore drug combinations instead of staying with traditional chemo.

By January 2023, all the tumors, including the one in her liver, had disappeared. The targeted therapies appeared to be doing their job. Unfortunately, cancer has a way of adapting, and as it learns to overcome one targeted therapy, it often becomes quicker at circumventing the next. In mid-June 2023, a new scan revealed a large tumor on her liver. Elizabeth began chemo and was hospitalized with shortness of breath on July 2nd. Sadly, on the morning of July 3rd, with Sven by her side, Elizabeth passed away. Her passing occurred just 12 days before what would have been Sven and Elizabeth’s 17th wedding anniversary and 27 days before her 54th birthday.

Elizabeth played an active role in various lung cancer advocacy and research organizations. She served as a member of the Global Lung Cancer Patient Council sponsored by Roche Pharmaceuticals, a member of the Pfizer Lung Patient Steering Committee, a member of the Leadership Team of UPMC Hillman Lung Cancer SPORE Committee, and in May 2023, she joined the Lung Cancer Research Foundation as a Research Advocate. Through the organization GO2 for Lung Cancer, she passionately advocated for increased awareness and funding for lung cancer research. Elizabeth was also a member of the GO2 Voices of Summit Planning Committee, and for a long time, she participated in the Phone Buddy Program, offering guidance, support, and, most importantly, hope to newly diagnosed lung cancer patients. Her dedication and contributions were recognized in 2022 when she received the GO2 Voices Summit Leadership and Advocacy Award.  

Elizabeth became focused on being the patient’s voice as a consumer reviewer for the Congressionally Directed Medical Research Program, where she evaluated research study applications for their relevance to the needs and concerns of patients. She joined CDMRP as a consumer reviewer in 2019 and actively participated in eight peer review panels, evaluating countless research grant applications. Additionally, both Elizabeth and Sven served on the Genentech Patient Co-Creation Council. Elizabeth also advocated to end the stigma associated with lung cancer, served as a patient representative with pharmaceutical companies, and spoke about being a survivor. Most importantly, she LIVED, traveled, laughed, and had the occasional cocktail or two.

Sven and Libby embraced the advice they were given shortly after her diagnosis from Dr. Petro: “Keep making memories.” That became the “theme” of their annual Christmas cards. Sven would like to express his gratitude to the staff of the Hillman Cancer Center for the incredible care they provided to Elizabeth. In particular, Sven wishes to thank Daniel Petro, M.D., and Stephanie Kaiser, M.S.N., CRNP, AOCNP, who treated and cared for Elizabeth for almost seven years and developed a true bond and deep friendship.