We are patients, caregivers, researchers, and advocates. We each have a perspective that can be helpful for new patients and caregivers and those courageously battling this cancer for many years.
Below is just a glimpse of “Who we are” as it relates to this cancer.
Pat- “I am a 14-year lung NET patient whose symptoms were active but unrecognized for 20 years. My surgery was a bilobectomy in 2005, and I have been on Sandostatin injections for 10 years. I am NED (no evidence of disease) except for a NETest score that indicates that the cancer is still present. I joined the group in 2009 and found people who looked like me (facial flushing) and who knew what I was experiencing daily. Since then, I have kept a detailed record of my symptoms as they occur (both on my phone as well as on a monthly spreadsheet) and it has been a great help in talking with doctors about my medical situation.”
Merf– “My wife, Pat, is a lungnoid. And I’m a caregiver and a non-NET cancer survivor, as well as a retired investigator. I do research for my wife and the NJ group and others, and I’ve spent 14 years reading about and studying NETs and other cancers. I try at our meetings to offer insights into NETs, treatment issues, and life with cancer in plain language so people can truly understand what they face and so that the many untreated or undertreated can obtain proper care. And I have also assisted members of our group in applying for social security disability benefits. We are all on this journey together and it is important that we assist one another.”
Mike- “I’m a seven-year mid-gut tumor patient. When I first met previous officers of this support group, they were so friendly and persistent about joining that I thought the group was some sort of cult. I now know better and how important a group like this is, especially for the newly diagnosed. We’ve all been there, eventually diagnosed with this rare and confusing disease and not knowing a Ki-67 from a 5-HIAA or a Chromogranin-A result from a NETest score. Others helped us, and we’d now like to share our experience and do our best to help you.”
Maureen- “I am a seven-year NET patient with carcinoid syndrome currently being treated with Lanreotide and Xermelo. I have been involved in several clinical trials and enjoy going to conferences as often as possible to learn about our disease. I love to take notes and share information from those conferences for others. I joined the NJ support group only two years ago and am blessed to call them friends. Everyone, especially the leaders, are incredibly helpful, caring and informative. I cherish the group and the ongoing support whether I am able to make the meetings or via email: there is always someone there!”