Life in the Fast Lane
When Eileen “Red” Bildman was diagnosed with neuroendocrine cancer in 2017 little did she know how her life was going to change. It took her well over 10 years and numerous visits to many different specialty physicians, including gastroenterologists, a cardiologist, and an endocrinologist, before she was properly diagnosed. But that diagnosis did not hold her back from pursuing a dream to become a race car driver at the age of 58. This is her story.
Luncheon with the Experts continues
Due to an unforeseen conflict, our “Luncheon with the Experts” episode this week with Dr. Matthew H. Kulke is postponed this week — but just by ONE HOUR! So, it will start at 1pm Eastern Time, instead of 12pm. Hope to see you there!
Attendees will have an opportunity to pose questions during the event and the show moderator will share as many as possible with Dr. Kulke so he can answer them live.
This Facebook Live event will be hosted by B. Rain Bennett a longtime CCF filmmaker and dear friend of the NETs community. We hope you can join us!
For anyone not on Facebook, each of the presentations in the series is available on CCF’s YouTube channel, www.youtube.com/user/CarcinoidNETs. To receive notifications of all new videos on our YouTube channel, CLICK LIKE, SUBSCRIBE and HIT THE BELL to receive notifications each time a new video is uploaded.
Making History: Michelle Kang Kim, MD, PhD, is Cleveland Clinic’s First Female Chair of Gastroenterology
The appointment of Michelle Kang Kim, MD, PhD, as Chair of Cleveland Clinic’s Department of Gastroenterology, Hepatology and Nutrition is groundbreaking in several ways. Dr. Kim is the first woman to hold that position at Cleveland Clinic, and she is among the fewer than 10% of gastroenterology division chiefs nationally who are female. Dr. Kim is an expert in neuroendocrine tumors. READ MORE
New Natural History Study of Neuroendocrine Tumors and Neuroendocrine Carcinoma Opens at the National Cancer Institute
You can help physicians and scientists learn more about neuroendocrine cancer in order to develop future treatment options. A new clinical study, sponsored by the National Cancer Institute (NCI), has just opened and is looking to recruit and follow neuroendocrine neoplasm (NENs) and adrenocortical carcinoma (ACC) patients for a period of ten years in order to learn more about these uncommon cancers. Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC), with principal investigator Jaydira Del Rivero, MD, is a national and international study. READ MORE
World’s 1st Distinguished Professorship in Neuroendocrine Tumor Research at UK Markey Cancer Center
Very exciting news from the UK Markey Cancer Center! The University of Kentucky Markey Cancer Foundation received a $1 million gift to create the world’s first distinguished professorship in neuroendocrine tumor (NET) research.
The Amanda W. Lockey Foundation has given the gift in support of UK Markey Cancer Center medical oncologist Lowell Anthony, MD, a specialist in NET treatment. The distinguished professorship in neuroendocrine tumor research will support Dr. Anthony’s work by allowing him and his team to focus on clinical and translational research and the development of a radiotherapeutic program. READ MORE
News for US Veterans with Lung NETs
For US veterans with typical and atypical lung neuroendocrine tumors – the VA has added several conditions to the list of presumptive illnesses related to military service, including lung carcinoid. With appreciation to all our veterans for your service. https://www.fedweek.com/armed-forces-news/va-adds-to-list-of-presumptive-diseases/
Unique Opportunity for Neuroendocrine Tumor Patients
For many neuroendocrine cancer patients, access to physicians who specialize in this disease is challenging or simply not possible. The National Cancer Institute, NCI, is offering neuroendocrine tumor (NET) patients a unique opportunity to have a multidisciplinary tumor board review of their medical records and make recommendations about NET treatment options. READ MORE
Neuroendocrine Tumor Information in 10 Languages
Did you know that the International Neuroendocrine Cancer Alliance (INCA), has free, NET info packets in 10 languages? Click here to select your language and download the factsheets: https://incalliance.org/net-info-packs/. The Carcinoid Cancer Foundation is proud to be a founding member of INCA.
CCF Infographic: 6 Questions to Ask Your Doctor
Have you or someone you love been diagnosed with a neuroendocrine tumor or carcinoid cancer? It can feel like a daunting task to figure out next steps and doctor appointments may be overwhelming. You can help yourself or support a loved-one by learning about the disease and preparing yourself for doctor visits. The first visit may be the most challenging, so It’s important to arm yourself with relevant questions. Here we provide you with six questions, specific to neuroendocrine tumors, to ask your doctor. Click here to download the infographic.
Guide to Understanding Carcinoid Syndrome
Know the signs and symptoms — skin flushing, diarrhea, heart racing . . . it could be carcinoid syndrome! How is it diagnosed, what are the treatment options, what questions should you ask your healthcare provider? Read more in Guide to Understanding Carcinoid Syndrome, from Health Monitor and the Carcinoid Cancer Foundation: https://www.carcinoid.org/wp-content/uploads/2015/10/Carcinoid-Syndrome-Guide-to-Understanding.pdf.
Reaching Those Who Are Still Undiagnosed
To combat statistics showing that it often takes 5 to 7 years for patients to receive the correct diagnosis of a neuroendocrine tumor (NET), the Carcinoid Cancer Foundation has partnered with Advanced Accelerator Applications to create an infographic — Could You Have a Neuroendocrine Tumor— listing common symptoms and misdiagnoses. Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.