Nancy Robin Stone (1956 – 2018)

Nancy Robin Stone (1956 – 2018)

This page is dedicated to the memory of Nancy Robin Stone – Support Group leader and webmistress, and my late wife.

Nancy was one of the organizers of the Big Apple NETs Support group along with Emily Zuckerberg and Beth Ripston.  She was the creator of the original Big Apple NETS website.  Through her affiliation with Big Apple NETS, she touched the lives of the people she met with her quiet courage and strength, and her desire to reach out and help other NETs patients.

Nancy was initially diagnosed with lung Carcinoids at the end of 2011. For the next seven years she played whack-a-mole with this alien invader, swatting down one tumor cluster only to have another pop up soon after. She passed away on September 19, 2018 from complications related to her pancreatic and mid-gut Neuroendocrine cancer.

Nancy was a determined and intrepid fighter. She tried every available treatment, from surgery to NET-targeted therapies to chemotherapy to a NET-specific immunotherapy clinical trial drug. Each worked for a time, but her cancer proved to be just as persistent. After a major surgery exposed the extent of her tumor growth, and further surgery was no longer an option, she quietly decided it was time to let go.

After her initial diagnosis, Nancy was relentless in her pursuit of understanding and knowledge about Carcinoids and Neuroendocrine Tumors. She consumed prodigious amounts of online information, consulted with numerous experts throughout the country, and joined many online support groups to learn about her disease and the practical aspects of living with NETs. True to her nature, the more she learned, the more she wanted to guide those who were just beginning the learning process.

As much as Nancy did throughout her life, her legacy extends after her death. She authorized Mount Sinai Hospital’s tumor bank to collect whatever tumor tissue they felt would be beneficial for their research. She received immunotherapy drug infusions for over a year, and she hoped that the tissue samples would reveal just how effective NET-specific immunotherapy is.

For the seven years she lived with NETs, Nancy was under the care of an extraordinary team of physicians and staff from the Mount Sinai Hospital Center for Carcinoid and Neuroendocrine Tumors.  Those wishing to honor her life can make a donation to the Center in her memory.  Donations can be made online here, or by sending a check to Mount Sinai Health System, One Gustave L Levy Place, Box 1049, New York, NY 10029. Make the check out to the Mount Sinai Health System, with the “Center for Carcinoid and Neuroendocrine Tumors” in the memo line. Please include a note stating that your donation is in memory of Nancy Stone.

— Steve Rosenstein, Big Apple NETS Website Administrator