Patient Stories

Empowering others to contribute to rare neuroendocrine tumor research

Lacey Koelling was diagnosed with paraganglioma tumors in 2018, which began to metastasize five years later. She enrolled in an NIH trial to contribute to research on this rare cancer.

An observant patient opens new doors for cancer screening

David Drash enrolled in a CCR clinical trial when he was diagnosed with BAP1 tumor predisposition syndrome (TPDS) in 2022. He noticed that everyone in his family with BAP1 TPDS had white lines on their fingernails; his observation led to the discovery of a new detection tool.

Opting for a Novel Combination Treatment for Resistant Aggressive B-Cell Lymphoma

In 2020, Justin enrolled in a CCR trial testing a five-drug combination treatment called ViPOR for non-Hodgkin lymphoma. Four years later, his doctor Christopher J. Melani, M.D., Assistant Research Physician in the Lymphoid Malignancies Branch, describes Justin as likely cancer-free.

Six years after preventive surgery: a patient’s future without stomach cancer

Faced with a high risk of developing stomach cancer, David Fogel chose to undergo preventive surgery as part of an NIH research study. Six years later, David is thriving, and so is the research that was made possible by his participation.

The ups and downs of a rare blood cancer won’t stop one resilient patient

Even with a rare cancer diagnosis and a roller-coaster ride of a journey, Luis Miguel Cruz continues to find the motivation to keep moving forward through every setback. Along the way, he has inspired and brought joy to those he has met, both in person and digitally.

Remembering Miranda Leah Hanson-Baseler, an indomitable immunologist

Faced with a uterine sarcoma diagnosis at just 24, Miranda Leah Hanson-Baseler persevered through treatments for 17 years.

Peter Richman, Estefania E. Marchan and their daughter Rafaela

Removing risk of stomach cancer for her daughter

Stomach cancer remains deadly in the United States despite its rarity. After discovering she was at high risk for the disease, Estefania E. Marchan decided to undergo a total gastrectomy. For a subsequent pregnancy, she ensured her daughter would never face the same risks.

Cole Silver at the NIH Clinical Center for a check-up with Dr. Charalampos Floudas.

Immunotherapy options for head and neck cancers abound at CCR

In the spring of 2017, Cole Silver was diagnosed with head and neck cancer. Over the last few years, he has participated in four clinical trials led by Charalampos Floudas, M.D., D.M.Sc., M.S., Assistant Research Physician, and Julius Strauss, M.D., Associate Research Physician, in the Center for Immuno-Oncology. The variety of trials at NIH gives him hope that he may find a treatment that works for him.

Five years later, an immunotherapy trial for prostate cancer sustains hope

In 2018, we interviewed Tom, a retired surgeon battling prostate cancer who, in 2016, enrolled on an immunotherapy clinical trial led by James Gulley, M.D., Ph.D., Co-Director of the Center for Immuno-Oncology. Now, five years since he first started on the trial, his PSA levels have remained undetectable and his scans continue to come back clean.

Living with and learning about neuroendocrine tumors: A conversation with Dr. Jaydira Del Rivero

Jaydira Del Rivero, M.D., Assistant Research Physician in the Developmental Therapeutics Branch, studies neuroendocrine tumors – a rare group of malignant neoplasms that originates from neuroendocrine cells and affects almost any part of the body. In this Q&A, Dr. Del Rivero and a natural history trial participant discuss an ongoing neuroendocrine study and their experiences at NIH.

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