The Neuroendocrine Cancer Foundation Podcast - Top 10 FAQs with neuroendocrine cancer experts - Episode 30: Bone & Brain Metastases in Neuroendocrine Cancer

Episode 30: Bone & Brain Metastases in Neuroendocrine Cancer

02/15/24 • 43 min

The Neuroendocrine Cancer Foundation Podcast - Top 10 FAQs with neuroendocrine cancer experts

When and how often do NETs spread to the bones or brain? How are they found? What is the treatment? Dr. Robert Ramirez of Vanderbilt University addresses concerns surrounding bone metastases (or “mets”) as well as rare brain metastases.
MEET DR. ROBERT RAMIREZ, DO, FACP

Dr. Robert Ramirez is a medical oncologist specializing in the treatment of thoracic and neuroendocrine malignancies and an Associate Professor of Medicine at Vanderbilt University Medical Center in Nashville, TN. He earned his medical degree from the University of Medicine and Dentistry of New Jersey School of Osteopathic Medicine. He completed an internal medicine residency at Cooper University Hospital in Camden, New Jersey. He then completed a hematology and medical oncology fellowship at the University of Tennessee Health Sciences Center in Memphis, Tennessee and served as chief fellow. He is a Fellow of the American College of Physicians, and a member of American Society of Clinical Oncology, the International Association for the Study of Lung Cancer (IASLC), and the North American Neuroendocrine Tumor Society (NANETS). He serves on the Board of Directors for NANETS as well as the Scientific Review and Research Committee.

His clinical and research interests include neuroendocrine tumors (NETs) and lung cancer. He has a specific interest in NETs of the lung ranging from diffuse idiopathic pulmonary neuroendocrine tumor cell hyperplasia (DIPNECH) and carcinoid tumors to small cell lung cancer and other high-grade neuroendocrine carcinomas. He is active in clinical trial design including investigator-initiated trials. He enjoys teaching residents and fellows and has multiple publications and given many lectures for the scientific community on the topics of NETs and lung cancers.
TOP TEN QUESTIONS

Bone mets:

1. When and how often do NETs spread to the bones?

2. Where in the bones are tumors? What does it mean when NETs spread to the bones? How does this compare to other cancers?

3. How are bone spots found and monitored? Should they be biopsied?

4. What is the treatment for bone mets? Should I have radiation? Would radiation limit my ability to get PRRT?

5. Should I be on bone strengthening medication? Am I at higher risk for fractures (or breaking my bones) if I have NETs in the bones?

6. Do bone mets respond to PRRT?

7. Does having bone mets put me at a higher risk of MDS?

Brain mets:
8. When and how often do NETs spread to the brain? Do all types of NETs have the potential to spread to the brain?
9. How are brain mets found and monitored? When should I suspect this?
10. How are brain mets treated? What does having brain mets mean for my life?
*Bonus: What final words of hope do you have for the neuroendocrine cancer community?

For more information, visit LACNETS.org.

Bone mets:

1. When and how often do NETs spread to the bones?

2. Where in the bones are tumors? What does it mean when NETs spread to the bones? How does this compare to other cancers?

3. How are bone spots found and monitored? Should they be biopsied?

4. What is the treatment for bone mets? Should I have radiation? Would radiation limit my ability to get PRRT?

5. Should I be on bone strengthening medication? Am I at higher risk for fractures (or breaking my bones) if I have NETs in the bones?

6. Do bone mets respond to PRRT?

7. Does having bone mets put me at a higher risk of MDS?

For more information, visit LACNETS.org.

Previous Episode

Episode 29: "Nutrition & Diet Considerations for NET" with Sina Teskey

NET dietician Sina Teskey from the Medical College of Wisconsin answers common questions about diet and nutrition raised among NET patients and caregivers. She addresses special diets, food restrictions, and whether sugar “feeds” cancer. Sina also speaks to diarrhea, and digestive enzymes and shares tips on how to maintain nutrition and weight.
MEET SINA TESKEY, RD, CD
Sina Teskey, RD, CD received her B.S. from the University of Wisconsin-Madison in 2006 and completed her dietetic internship at the University of Minnesota Medical College-Fairview in 2007. She has spent most of her career working with cancer and eating disorder patients. Sina practiced in the Twin Cities area for 10 years where she also spent time guest starring on a local TV show called Twin Cities Live to share nutrition advice.

She moved to Milwaukee and has worked at Froedtert Hospital and the Medical College of Wisconsin since 2018. Sina sees all patients with cancer but specializes in GI cancers and neuroendocrine tumor patients. When she’s not working, Sina is a mom to three kids and a Labrador retriever. She loves to cook and bring people together with food. Her youngest son was diagnosed with non-Hodgkin’s Lymphoma in 2019. His cancer journey gave insight into what having cancer means to a family and has impacted her practice profoundly. Her son Milo is now 7 years old and in remission.

TOP TEN QUESTIONS

Is there a diet NET patients should follow? Are there foods NET patients should avoid? Some people say there are certain “trigger foods” to avoid. What CAN I eat?
What diet is helpful after bowel surgery? What about pancreas surgery?
Are there vitamins or supplements recommended for NET patients?
What can NET patients do about diarrhea? What diet or medications might help?
What can NET patients do if they struggle with a poor appetite?
What can NET patients do if they are struggling to keep on or gain weight?
What can NET patients do to stay hydrated?
What are pancreatic enzymes and how are they taken? Who are they recommended for?
What proteins can people take if they are vegetarian or vegan given soy may be a trigger for carcinoid syndrome?
What do you think of alternative diets such as the keto diet or other “special diets?” Does sugar feed cancer? What about intermittent fasting?

For more information, visit

For more information, visit LACNETS.org.

Next Episode

Episode 31: (Part I) Clinical Trials - Expectations vs. Realities

In this two-part series, we reprise “Navigating Clinical Trials: Expectations vs. Realities” with Taymeyah Al-Toubah. This was previously broadcast on August 19th, 2023, as a LACNETS monthly educational webinar. In Part 1, Taymeyah discusses clinical trial terminology, timeline, questions to ask, and misconceptions. In Part 2, Taymeyah answers questions about logistics and practical aspects of clinical trials, such as costs, response time, and follow-up. She also answers frequently asked questions about PRRT trials, including alpha trials.
MEET TAYMEYAH AL-TOUBAH, MPH
Taymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelor’s degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children’s Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public Health in Epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs.

From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences.

In April 2023, she formally transitioned to a new position as a project manager of the NET program, where she will continue to mentor new coordinators while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt.

She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member of NANETS on the Continuing Education and Symposium Planning committees.

She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator.

For more information, visit LACNETS.org.