NETCONNECT is a buddy system to connect NET patients and caregivers with others to be there for one another to ask questions, for support, and beyond.
We were ALL once the newly diagnosed - or the loved one of someone newly diagnosed - and know what that feels like. Many of us were fortunate to have someone reach out to us and guide us in the beginning, to learn how to “speak NET,” become familiar with new terms, physicians, and treatment options. We learned where to find support - the wonderful local meditation class, tips on foods that trigger symptoms, suggestions on managing fatigue or scan-xiety…or maybe just a reminder to take a deep breath!
CONNECT WITH A MENTOR
Whether you are newly-diagnosed or a long-term survivor, our mentors are here for you. Please send us an email to be connected with a mentor.
MEET THE NETCONNECT MENTORS
Brent was diagnosed mid-2017 and had his large midgut primary NET near the ileum resected. He's now monitoring his metastases, taking lanreotide and working with his team to minimize the side-effects, and is happy to be working with newly diagnosed patients. He is finding this stage of life to be a faith journey just as much as it is a medical journey. He is also a caregiver to his cancer survivor mom, and enjoys technology and singing/playing music.
NET Caregiver & Advocate
Heather is an advocate/caregiver for her mother diagnosed with pancreatic neuroendocrine in 2012. Significant, functioning liver metastasis and near fatal complications of her mother’s undiagnosed Zollinger-Ellison Syndrome motivated Heather to shift her 20-year marketing career to healthcare. She is extremely grateful for LACNETS, NET specialists and PRRT keeping her mother stable and well. Heather is passionate about the need for patient advocates and supporting the NET community and caregivers. She is currently training in a health care advocacy certificate program at UC Berkeley. Spending free time with her nephews, friends & family brings Heather levity and joy and the adventures of online dating keeps her on her toes!
Watch Heather and her mother share about their experience with PRRT.
Beth was diagnosed in 2016 with metastatic, midgut NET. In that time, she has made aesthetic oncology and integrative therapies her passion. Her mission is to help enhance the quality of life for fellow cancer patients and caregivers, including herself, her four children, and husband.
Watch Beth share her inspiring story of strength and resilience titled, “A Shared Experience” here.
Michel DeQuevedo is a Mexican – Canadian musician living with NETs. After almost 10 years of being “diagnosed” with pretty much every single gastrointestinal condition, changing his diet almost as often as his socks, constantly visiting everybody’s bathrooms and taking tons and tons of non-recreational drugs, he was diagnosed with functional, grade 1, Gastrointestinal NETs, small bowel primary with mets in his liver, appendix, right lung and omentum in September 2021.
Michel had an open surgery in December 2021 where some of his factory original parts where removed, along with 90% of the tumors. He is currently on Lanreotide, 120mg every 21 days and can finally have a conversation with someone without having to take bathroom breaks!
Michel is an active patient advocate and the founder of NETs México, working to raise awareness about NETs in México and Latin America. He believes keeping a positive attitude is extremely important, as it helps us maintain a clear mind and keeps us moving forward.
Watch Michel’s story of diagnosis to patient advocacy here. This video is also available in Spanish, found here.
NET Patient & LACNETS Board Member
Mary was diagnosed in 2005 with a pancreatic NET. She had the whipple procedure after her original diagnosis and is currently treating her liver metastases with afinitor and sandostatin. She has been on this treatment for 10 years with stable disease. She is a mother to four children, two of which are identical twins born after her diagnosis with NET.
Watch Mary share about her experience in a clinical trial.
Watch Mary also share about "scan-xiety," the common anxiety patients sometimes have when undergoing scans here.
Kelli has lived with Neuroendocrine Cancer since 2003! She was diagnosed with a primary NET in her midgut with liver mets. Kelli has managed her disease with a succession of treatments from liver directed therapies to PRRT. She attributes her health to innovative health care, a nurturing community of friends and family, and a deep spirituality.
Watch Kelli share how her world initially crumbled after her diagnosis and how she has since learned not just to survive, but also to thrive.
Denny likes to say that he is living quite well with well-differentiated grade 3 NETs first diagnosed in June of 2020, with significant mets in his liver. Early in his NET journey he dedicated the time to gain as much understanding and knowledge as possible about his disease, treatment options and prognosis. His path has been somewhat unique in having his first-line treatment be PRRT. Denny is a very engaged self-advocate and has assembled a strong cross-functional medical team of NET specialists for support. With his cancer, carcinoid heart disease and gallstones all currently stable, Denny has the time and energy to enjoy a wide variety of hobbies and connect with other NET patients throughout the west coast.
SAMUEL PRENTICE JR.
Samuel is a widowed, 75 years young, retired professional social worker, wholistic counselor, and educator who had 9 feet of small intestine, ileum, connection, and colon removed in 2017 due to NET. He had colon blockage which led to a colostomy and struggles with weight loss. Currently, monthly octreotide and PRRT have halted his tumor growth. Samuel maintains quality of life by exercising, singing, dancing, traveling between homes in Southern California and Chicago, and continues his personal/spiritual growth and progressive political activism. He enjoys family, friends, his Acura NSX, and attending hockey, theatre, music, and fine art events.
NET Caregiver & Advocate
Aimee Powell's involvement with the NET cancer community has its roots in her work as a caregiver for family members diagnosed with pheochromocytoma and paraganglioma (pheo/para). She has worked in an administrative capacity with nonprofits since 2005, and as a professional communicator for over twenty-five years. After her brother's death from malignant paraganglioma, she dedicated herself to raising awareness of para/pheo, and to assisting patients with these rare tumors. Aimee is the founder of the Pheo Para Project, past Executive Director of the Pheo Para Alliance, and currently sits on the board of directors for the SDH-Deficient Cancer Research Advocates. She lives in the Greater Los Angeles area.
Val was diagnosed with Carcinoid Syndrome in October 2015 with unknown primary. She is currently on lanreotide every 21 days, supplemented with rescue shots 4 – 7 times per day. Along with the unpredictable diarrhea and fatigue, she also deals with sudden shortness of breath and a hoarse voice. The rescue shots have been a blessing for her. Val’s doctors feels her NET is hiding, so routine tests and scans are done to try and locate the elusive tumor. This can be an ongoing challenge for some NET patients, so getting the right specialist is crucial. Val recently retired after spending the last 20 years working with hospitals on designing security systems for patient protection. Her goal is to travel with her husband and spend time with her two adult children.
Beth is the primary advocate and caregiver for her husband Don. Don started on this roller coaster ride when he was diagnosed in November 2019 with midgut NETS with metastases to his liver, pancreas, and bones. He also experiences carcinoid syndrome. He has undergone numerous treatments for his NETS as well as replacement of both his tricuspid and pulmonary heart valves. His symptoms have been very difficult to control.
Beth’s professional career as a palliative care nurse provides a unique perspective on the role of advocacy and caregiver.
Beth and Don have experienced both highs and lows on this journey, but they continue to take it one day at a time. Traveling when they can and making memories with family and friends along the way.