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

How do NET experts decide what treatments are right for you? How do I learn about current clinical trials? In our sixth episode, NET expert and medical oncologist Dr. Daneng (Dan) Li of City of Hope answers 10 common questions about decision-making for NETs including finding the primary tumor site, bone mets, tumor grades, and the role of adjuvant therapy. Listen now!

For more information, visit LACNETS.org.

What is Carcinoid Heart Disease (CHD)? Which NET patients develop CHD? Retired cardiologist and carcinoid heart disease specialist Dr. Jerome Zacks provides an overview of CHD and describes the appropriate screening, diagnosis, and treatment.

MEET DR. JEROME ZACKS

Dr. Jerome Zacks is a Cardiologist/Carcinoid Heart Disease Specialist; retired since December of 2021; but remain active as Associate Clinical Professor of Medicine at the Icahn Medical School at Mount Sinai in New York City and founding member of the Center for Carcinoid and Neuroendocrine Tumors at the Icahn Medical School at Mount Sinai; founder of the Carcinoid Heart Center; formerly on the Medical Advisory Board of the Carcinoid Cancer Foundation; currently head the Electrocardiography course for the 4th Year Medical Student elective at the Mt. Sinai Medical Center which has resulted in an international reputation among students seeking Cardiology training in the United States.

He has expertise in matters of health care Insurance Carriers' theft of funds from the Medicare program, has studied patterns of abuse in the Medicaid program and has extensive knowledge of pharmaceutical company abusive practices.

Dr. Zacks continues to devote time to the care of patients with Carcinoid Heart Disease. He has served as a member of the Guidelines Committees of the European Neuroendocrine Tumor Society (ENETS) and of the North American Neuroendocrine Tumor Society (NANETS). He developed a new approach to compression stockings for patients with leg edema; he was granted a patent for this innovation. He has authored two national petitions urging Congress to mandate that any health care professional who uses one’s license, in making decisions which influence a patient’s care, be held to the SAME STANDARD OF CARE as the patient’s treating professional. (These two petitions were blocked by Senator Cory Booker.) In his role as patients’ physician, he has attempted to remove barriers of communication. His business card includes his personal mobile phone number as well as his email address and website information; He encourages patients to phone for immediate answers to urgent matters. Along with his wife, Yelena - an RN- they have devoted their professional lives to patients with heart disease from rare Neuroendocrine tumors. They have mentored 5 children, and are now learning from them and their 6 grandchildren have provided the real fuel and excitement for their lives.

For more information, visit https://www.ncf.net/podcast/43

For more information, visit LACNETS.org.

How do SSAs work? Should all NET patients be on one? What are the side effects? Dr. Edward Wolin from Mount Sinai Health System answers several common questions about the current and future role of somatostatin analogues in NET treatment.

MEET Dr. EDWARD M. WOLIN

Professor of Medicine, Medical Oncology, Icahn School of Medicine Director, Center for Carcinoid and Neuroendocrine Tumors Tisch Cancer Institute, Mount Sinai Health System

Dr. Edward M. Wolin is an internationally renowned authority on neuroendocrine tumors. Dr. Wolin is the Director of the Center for Carcinoid and Neuroendocrine Tumors at the Tisch Cancer Institute at Mount Sinai and Professor of Medicine, Medical Oncology at the Icahn School of Medicine at Mount Sinai.

The multidisciplinary Center for Carcinoid and Neuroendocrine Tumors features a robust research program with clinical trials aimed at finding the most effective treatments, including immunotherapy, biologic agents, targeted radiation therapy, and new approaches in molecular imaging for diagnosis. Dr. Wolin has pioneered innovative therapies with novel somatostatin analogs, mTOR inhibitors, anti-angiogenic drugs, and peptide receptor radiotherapy.

Prior to joining Mount Sinai, Dr. Wolin was Director of the Neuroendocrine Tumor Program at Montefiore Einstein Cancer Center. Previously, he worked for more than two decades with Cedars-Sinai Medical Center in Los Angeles, where he founded and directed one of the largest Carcinoid and Neuroendocrine Tumor Programs in the country, and subsequently directed the Neuroendocrine Tumor Program at University of Kentucky. Dr. Wolin is also the Co-Medical Director for the Carcinoid Cancer Foundation and is on the Carcinoid Cancer Research Grants Scientific Review Committee for the American Association for Cancer Research. He has published in many prestigious journals, including the New England Journal of Medicine and Journal of Clinical Oncology, and is a reviewer for numerous journals, including Journal of Clinical Oncology, Molecular Cancer Therapeutics, Clinical Cancer Research, and The Lancet Oncology.

During Dr. Wolin’s two decades at Cedars-Sinai Medical Center in Los Angeles, he developed a close friendship with LACNETS founder Giovanna Joyce Imbesi. Dr. Wolin was instrumental in the co-founding and development of LACNETS. LACNETS has always been very dear to his heart and he cherishes and honors the memory of Giovanna.

Dr. Wolin earned his medical degree from Yale School of Medicine. He completed both his residency in internal medicine and fellowship in medical oncology at Stanford University Hospital. He was also a clinical fellow at the National Cancer Institute of the National Institutes of Health. Dr. Wolin is board certified in internal medicine and medical oncology.
TOP TEN QUESTIONS ABOUT SOMATOSTATIN ANALOGUES (SSAs) FOR NETS:

1. What are somatostatin analogues (SSAs)? How do they work?

2. When and how are SSAs used?

3. Which SSA should a patient be on? What is the difference? How do you decide?

4. How do you know if a SSA will be helpful? Should ALL NET patients be on a SSA?

5. What about patients whose tumors don’t “light up” on a DOTATATE scan?

6. How long can someone stay on a SSA?

7. What side effects may patients experience from the shot? What can patients do to prevent or manage these symptoms? How might it affect one’s day-to-day ability to work and function? Can I live a “normal life” while taking this medication?
8. If the tumor is growing does this mean the SSA did not work? Do you continue it when patients are treated with another treatment? When do you stop a SSA?
9. What is the future of SSAs? I heard there is a pill that is available in a clinical trial. Ca

For more information, visit LACNETS.org.

What are Hindgut NETs (distal colon and rectum), and how are they treated? How is rectal NET different from rectal cancer? What makes appendiceal NETs difficult to diagnose? Dr. Hagen Kennecke from Providence Cancer Institute in Portland, Oregon, shares insights on the diagnosis and management of Hindgut NETs and appendix NET.

For more information, visit LACNETS.org/podcast23 for the transcript and resources.

For more information, visit LACNETS.org.

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.