The LACNETS Podcast - Top 10 FAQs with neuroendocrine tumor (NET) experts

ABOUT THIS EPISODE

What are Targeted Therapies and how do they work? How and when would they be used in NETs? Dr. Scott Paulson from Baylor Cancer Center in Dallas discusses common questions and concerns about targeted therapies including side effects, dosing and treatment sequencing. Bonus: Dr. Paulson shares how we can learn from Harry Potter’s invisibility cloak in understanding treatment goals with NETs.
MEET DR. SCOTT PAULSON

Dr. Paulson is a medical oncologist and the medical director for the Neuroendocrine Research and Treatment Center at Baylor Charles A. Sammons Cancer Center in Dallas, Texas. He also serves as the co-director of the Gastrointestinal Research Program for the Sarah Cannon Research Institute.

Dr. Paulson earned his medical doctorate at The University of Texas Southwestern Medical School. He took his residency and an internship in internal medicine at Brigham and Women's Hospital in Boston, Massachuests. His fellowship was completed in medical oncology at the University of California, San Francisco.

Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. He currently is an investigator on a clinical trial studying nab-sirolimus, a mTOR inhibitor, which is a type of targeted therapy.
TOP TEN QUESTIONS ABOUT TARGETED THERAPIES FOR NETs:

1. What are targeted therapies? Are they considered chemotherapy? How do they work?
2. What are the different types of targeted therapies for NETs?
3. When and how are targeted therapies used?
4. What side effects might someone have when taking a targeted therapy?
a.Can targeted therapies affect blood sugars or cause diabetes?
b. Can targeted therapies cause one to be immunocompromised?
c. Can targeted therapies affect one’s blood counts?
5. What is the goal of treatment with targeted therapies? (Why would one take these drugs given the potential side effects? Can the side effects be managed?)
6. How do you decide which targeted therapy to recommend for a patient?
7. Can a NET patient take more than one drug in this category? Can the medications be stopped and restarted?
8. What is your approach with dosing?
9. What is your approach with monitoring? What and how often do people need blood work?
10. Does taking a targeted therapy preclude someone from getting another treatment in the future, such as Lutathera/PRRT, or a clinical trial of alpha PRRT?
BONUS: What are the latest advances in targeted therapy? What is the future of targeted therapies?
For more information, please visit https://www.lacnets.org/podcast/33.

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.

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.

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.

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.