Nancy Robin Stone, 1956 – 2018

This page is dedicated to the memory of Nancy Robin Stone – your support group leader and webmistress, my spouse.

Nancy was one of the organizers of the Big Apple NETs Support group and the creator of the Big Apple NETS website.  Through her affiliation with Big Apple NETS, Nancy 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 six and a half years she played whack-a-mole with this alien invader, swatting down one cluster of tumors 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 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 knowledge and understanding about Carcinoids and Neuroendocrine Tumors. She consumed voracious amounts of online information, consulted with numerous experts throughout the country, and joined many online support groups to learn about the 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 for others throughout her life, her legacy continued after her death. She authorized the Mount Sinai Hospital tumor bank to harvest whatever tumor tissue they felt would be beneficial for their research. She had 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 six and a half years she lived with NETs, Nancy was under the care of the extraordinary physicians and staff of 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 to the Center 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, keeping the website and the memories alive