Steven Merlin and Davi D’Agostino Team Up to Help Others
Steven Merlin of New Jersey and Davi D’Agostino of Virginia were brought together by a diagnosis of metastatic pancreatic cancer.
Steven began following Let’s Win after he told us his story in 2017. When Davi shared her story in 2020, Steven reached out to her, and a partnership to help others was born. There are many parallels in their stories. Steven was diagnosed in June 2012 with the rare and highly aggressive acinar cell carcinoma at stage III locally advanced, borderline resectable, making him eligible for the Whipple procedure. Despite surgery and initial chemotherapy, metastatic disease was detected five months later. While undergoing tests for a different health issue, a tumor was found on Davi’s pancreas in February 2018. She was diagnosed with an inoperable stage IV adenocarcinoma tumor on the uncinate process of the pancreas, with metastasis on her liver.
Receiving a diagnosis of a catastrophic illness is a major challenge emotionally, mentally, and physically. One day everything is fine and the next day you find yourself dealing with adversity and reflecting on mortality. When this happens, you need all the help you can get from others who have been down this path before you. That’s where Steven and Davi come in.
More Than BRCA Mutations in Common
Precision medicine and targeted therapy played a pivotal role for both Steven and Davi. They each underwent genetic testing and the BRCA2 mutation was found—germline (inherited) mutation for Steven, a somatic (spontaneous) mutation for Davi. Both ended up in clinical trials of targeted therapy at the University of Pennsylvania.
Davi learned from her clinical trial team that there was a patient who did extremely well in a similar trial—years later the patient was still receiving the drug (Rubraca) and thriving. But she could not learn more about this patient because of HIPAA regulations. During treatment, she started Davi’s Pancreatic Cancer Journey, a blog to help other newly-diagnosed patients and caregivers navigate this terrible cancer and provide hope.
Steven was doing well. Because of his medical research background he regularly checked Let’s Win for the latest information on pancreatic cancer research and inspirational stories about other survivors and their treatment. He came across Davi’s story, with its similarities to his own story. When he saw the link to her blog, Steven immediately sent an email hoping he would get a response. Davi quickly responded and they began exchanging information about their diagnoses, similar chemo treatment, and enrollment in clinical trials on the same drug at the same institution but under different principal investigators. It was soon clear to Davi that Steven was the amazing role model patient she had heard about, the one successfully treated the longest with Rubraca (rucaparib).
Time to Help Others
Davi and Steven had even more in common—they both had a desire to help others through advocating for and mentoring of patients and caregivers. Steven is a long-time volunteer with PanCAN, lobbying Congress for funding and talking with patients and their loved ones as they go through treatment. Davi receives inquiries about dealing with a diagnosis—how to navigate the process and persevere—from domestic and international patients and caregivers who find her blog.
Now that she and Steven have connected, when questions arise of a scientific nature, especially regarding precision and targeted therapies, Davi consults with Steven for help answering the questions. With his background in immunology and cancer research, Steven handles the scientific aspects of questions, such as reviewing molecular profiling reports, promoting Let’s Win as a source of timely information, as he is quite up to date on the latest research and trials. The pair also helps patients search for potential clinical trials, sending them to the partnership between Let’s Win and the EmergingMed Clinical Trial Finder, which is available through the Let’s Win website. Davi and Steven also share beneficial information as they come across it.
As more people found Davi’s site and more questions needed answers, she and Steven turned from emailing to video conferencing. Thanks to this technology, they could schedule meetings that include patients and/or caregivers, including those who are overseas.
Time to Meet
With all their work together, and even though they live only four hours apart on the East Coast, Davi and Steven had never met in person. In between treatment cycles, both make regular trips to Europe. Steven is an active hiker and often visits family in Switzerland, while Davi conducts painting classes on European river cruises and owns an apartment in the south of France, in Avignon.
When their planned trips to Europe coincided in October 2021, they decided to meet in Avignon. Steven traveled from Zürich, and Davi made Steven’s childhood dream of visiting the Pont du Gard aqueduct a reality. Since then, they have been phoning and video chatting frequently as they collaborate to inspire patients and provide hope.
They met up again on December 7th at their doctors’ offices at the Abramson Cancer Center at the University of Pennsylvania. And Davi and Steven plan to be in Europe again in March 2022 and will get together in Avignon.
Davi and Steven continue to work together to help pancreatic patients and their loved ones. They are two individuals who were determined to turn a negative into a positive and enjoy being able to help people. Ultimately their goal is to have better outcomes for the patient.