2016 LungNET Conference Video Recordings

Happy Monday, fellow Zebras!

Some of you may have seen that NCAN and The Healing NET Foundation have been slowly releasing the videos from the LungNET Conference in Denver, CO on June 11th. Here is a place where you can get all the links in one spot!

Introduction to the 2016 LungNET Conference:

Visit NCAN’s website here. HNF’s website here, and for more information on Dr. Liu, you can get that here.

Basics of Lung Neuroendocrine:

For more information on Dr. Ramirez, you can see my post introducing him, here.

Pathology for Lung Neuroendocrine

You can find more information on Dr. Ryan here.

Surgery of Lung Neuroendocrine:

You can find more information on Dr. Parker here.

Pulonary Medicine for Lung Neuroendocrine:

To find more information on Dr. Kobitary click here.

Medical Therapy for Lung Neuroendocrine:

For more information on Dr. Öberg click here.

Clinical Trials in All Neuroendocrine:

For more information on Dr. Liu, see above links to Dr. Liu’s introduction as well as The Healing NET Foundation website.

Non-Medical Management of Metastatic Disease:

For more information on Dr. Nutting, click here.

Questions and Answers Part 1

Questions and Answers Part 2

NCAN would like to thank all of their speakers, sponsors, and attendees for another successful event!

Want to experience an NCAN NET Patient Conference yourself? Please keep up with NCAN by adding yourself to their mailing list by going to their website and be sure to “like” NCAN on Facebook! Also, keep your eyes out here, on NET Cancer Awareness Blog for some awesome announcements for 2017 coming soon!!

Upcoming: The 2016 National NET Patient Conference in New Orleans, LA!! If you haven’t already, check out that information here because time to register is running out!!

Survey on Cancer Education for Children

How much is too much (or not enough) to tell children about a parent’s cancer diagnosis?

Cancer education for children is something I am extremely passionate about. I have very strong views on this matter, having lived through this myself. I get asked all the time about what a parent should say or how much to say to their children when it comes time for the “Big C” discussion. On the other hand, since about the age of 12, I have also heard from hundreds of kids, like myself, who are on the receiving side of the information, who feel they haven’t been given enough.

This is something that I have been thinking about a lot the last few months and have tailored my ideas moving forward specifically for children of parents with NET Cancer. (Keep your eyes peeled this fall!)

I have been approached by CancerEd: a team of faculty and students from Calvin College in Grand Rapids, MI. CancerEd is working to create free content to be used teach K-12 students about cancer in a scientifically accurate, yet sensitive manner with materials that are age-appropriate. They already have a few of these lesson plans that can be viewed on their website CancerEd.org.

cancered

In efforts to keep developing quality content and to tailor these curriculums, they have reached out with a survey to better understand the conversation and tools being used (or needed) by parents (or caregivers) who have cancer (or had) in order to facilitate these highly important and difficult discussions.

Please take the time to fill out this anonymous survey and please pass this survey on to anyone who can participate in order to gather this extremely important information!

CancerEd Parent Survey

A huge thank you to anyone who takes the time to fill this survey!

If you have any questions or concerns reguarding this survey, or if you would like a PDF version to fill out or pass on to others, please reach out to me at tricia@netcancerawareness.org or leave me comments here!

Thanks again!

Tricia Wahmann-Knatz

Speaker Spotlight – National Conference Edition Part 11

drhowe

James R. Howe V, MD

uofiowaclinic

Bio:

Director, Division of Surgical Oncology and Endocrine Surgery

Co-Director, Neuroendocrine Cancer Clinic

Professor of Surgery  – Surgical Oncology and Endocrine Surgery

Education:

MD, University of Vermont College of Medicine

Fellowship, Surgical Research Fellow, Washington University

Residency, General Surgery, Barnes Hospital

Fellowship, Clinical, Surgical Oncology, Memorial Sloan-Kettering Center

Licensure and Certifications:

Iowa Medical License, Iowa Board of Medicine

Certified, Advanced Trauma Life Support

Board Certified, General Surgery, American Board of Surgery

Qualifying Examination, American Board of Surgery

Recertification Examination, American Board of Surgery

Research Summary:

I am a Surgical Oncologist and Endocrine Surgeon who specializes in taking care of patients with cancers of the pancreas, liver, GI tract, soft tissue sarcoma, melanoma, thyroid, parathyroid, and adrenal glands; I am co-director of the neuroendocrine cancer clinic, Division Director of Surgical Oncology and Endocrine Surgery, and Professor of Surgery at the University of Iowa. My area of research expertise is in Familial Cancer Syndromes, genetic linkage, gene discovery, and gene expression studies. My postdoctoral training at Washington University under Helen Donis-Keller, Ph.D. and Samuel Wells, M.D., was directed at the identification of the gene for Multiple Endocrine Neoplasia Type 2. As a faculty member, my focus has been the genetics of Juvenile Polyposis, which led to the discovery of the 2 predisposing genes. More recently, I have developed a large clinical practice and research interest in the genetics of neuroendocrine tumors (NETs). Our current research focus is the study of gene expression profiles in pancreatic and small bowel NETs to identify new targets for imaging and treatment, and collection of families to search for predisposing genes.

For more information on Dr. James Howe and the University of Iowa Hospitals and Clinics, please visit their website here. You can also view Dr. Howe’s academic profile, here.

You can read Dr. Howe’s publications by clicking here.

For information on the Neuroendocrine Cancer Program at the University of Iowa Hospitals and Clinics, you can find that here.

To make an appointment, please contact:

University of Iowa Hospitals and Clinics: 200 Hawkins Drive, Iowa City, IA 52242

Phone: (800) 777-8442 or (319) 356-1727

Dr. Howe at the 2016 National NET Patient Conference:

Topic: Hepatic Resection vs Liver Directed Therapy

When: Saturday, September 24th, 2016 at 8:30AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Howe and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!

Speaker Spotlight – National Conference Edition Part 10

drheidiconnolly

Heidi M. Connolly, M.D.

mayoclinic

Location

  • Minnesota

Departments

  • Cardiovascular Diseases

Education

  • Fellow – Adult Congenital Heart Disease Special Fellowship
    Mayo Graduate School of Medicine, Mayo Clinic College of Medicine
  • Fellow – Cardiovascular Diseases
    Mayo Graduate School of Medicine, Mayo Clinic College of Medicine
  • Resident – Internal Medicine
    Mayo Graduate School of Medicine, Mayo Clinic College of Medicine
  • MD
    Royal College of Surgeons in Ireland
  • Other – Undergraduate
    Hamline University

Certifications

  • Cardiovascular Diseases
  • Internal Medicine

Academic rank

  • Professor of Medicine

Professional Highlights

  • Director, Adult Congenital Heart Disease Clinic
  • Director, Congenital Heart Center

Interests

  • Adult congenital heart disease
  • Carcinoid heart disease
  • Echocardiography
  • Marfan syndrome and other aortic disorders
  • Pregnancy and heart disease

For more information on Dr. Heidi Connolly and the Mayo Clinic in Rochester, MN, please visit their website here and the US News report on her here.

You can read Dr. Connolly’s publications by clicking here.

To make an appointment, please contact:

Mayo Clinic Rochester: 200 1st Street SW, Rochester, MN 55905

Phone: (507) 284-2511 or (507) 538-3270

Dr. Connolly at the 2016 National NET Patient Conference:

Topic: Carcinoid Heart Disease: What you need to know

When: Saturday, September 24th, 2016 at 8:00AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Connolly and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!

Speaker Spotlight – 2016 National Conference Edition Part 9

drwoltering

Eugene A. Woltering, MD, FACS

Bio:

Eugene A. Woltering, M.D .FACS,is the James D. Rives Professor of Surgery and Neurosciences at the Louisiana State University Health Sciences Center in New Orleans. He also is the Section Chief of Surgical Endocrinology and the Director of Surgical Research at this institution. Dr. Woltering attended medical school at Ohio State University School of Medicine and completed his surgical residency at Vanderbilt University Affiliated Hospitals in Nashville, Tennessee. Dr. Woltering has also completed fellowships in surgical oncology at The OhioState University School of Medicine and the National Cancer Institute. Dr. Woltering specializes in the diagnosis and management of neuroendocrine tumors of the gastroenteropancreatic tract. His research interests include the development of radioactive drugs for the diagnosis and therapy of tumors and the development of human tissue based models that can be used to product drug activity in patients.

To make an appointment, please contact Pam Ryan, RN:

NOLANETS-New Orleans Louisiana Neuroendocrine Tumor Specialists                  200 West Esplanade, Ste. 200                                                                                        Kenner, LA 70065                                                                                                                    (504) 464-8500                                                                                                                               or toll free: (866) 91-ZEBRA

For more information about Dr. Woltering, please visit Oschner Health Center’s website here or his LSU profile here.

For more information on Dr. Gene Woltering and NOLA NETs, please visit their website here.

Dr. Woltering at the 2016 National NET Patient Conference:

Topic: Biomarkers: The Emerging Role of Pancreastatin and Neurokinin A

When: Friday, September 23th, 2016 at 9:45AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Woltering and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!

Speaker Spotlight – 2016 National Conference Edition Part 8

drtang

Laura H. Tang, MD, PhD

Pathologist

sloanketteringcc

Bio:

I am a pathologist who is trained in gastrointestinal surgical pathology and as a basic scientist with a focus on molecular pathophysiology of the gastrointestinal tract. My primary specialty is digestive diseases, particularly cancers of the gastrointestinal tract and the pancreas. I also specialize in gastroesophageal reflux disease (GERD) and Barrett’s esophagus, and have a special interest in gastrointestinal neuroendocrine tumors and carcinoid disease.

My investigative research involves elucidating the molecular mechanisms of cell proliferation and the regulation of malignant cell transformation, both with the goal of developing molecular techniques that will improve the early diagnosis and treatment of gastrointestinal tract cancers. I am currently involved in a multidisciplinary investigation of Barrett’s-related dysplasia and esophageal cancer. My career goals are to maintain excellence in the area of surgical pathology and diagnosis, and to improve patient care by developing strategies to speed the evolution of the field of morphologic pathology into a new era of functional and molecular pathology.

For more information on Dr. Laura Tang and Memorial Sloan Kettering Cancer Center, please visit their website here.

You can read Dr. Tang’s journal articles by clicking here.

Dr. Tang at the 2016 National NET Patient Conference:

Topic: The Histology Staging & Grading of NETs

When: Friday, September 23th, 2016 at 8:45AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Tang and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!

National Cancer Survivors Day 2016

whywecelebratencsd

Happy National Cancer Survivors Day!

“There are nearly 14.5 million people living with and beyond cancer in the U.S. today, and more than 32 million cancer survivors worldwide. On Sunday, June 5, 2016, communities around the world will gather to recognize these cancer survivors as part of the 29th annual National Cancer Survivors Day®.

National Cancer Survivors Day® is an annual worldwide Celebration of Life that is held on the first Sunday in June. It is the one day each year that people around the world come together to recognize the cancer survivors in their community, to raise awareness of the challenges these survivors face, and, most importantly, to celebrate life.

According to the National Cancer Survivors Day Foundation, administrator for the celebration, “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.””

To read the official press release on National Cancer Survivors Day, please click here.

For more information reguarding National Cancer Survivors Day, the National Cancer Survivors Day Foundation, and what you can do to celebrate, please visit www.ncsd.org.

I’m so thankful to be one of the millions of survivors who are able to celebrate this day!

helloiamasurvivor

Tell me how YOU are celebrating today!

FDA Approves Netspot, kit for Gallium Scan

We’ve all been waiting for this very news!!

Here’s the FDA Press release from the FDA website!

FDA approves new diagnostic imaging agent to detect rare neuroendocrine tumors

“The U.S. Food and Drug Administration today approved Netspot, the first kit for the preparation of gallium Ga 68 dotatate injection, a radioactive diagnostic agent for positron emission tomography (PET) imaging. This radioactive probe will help locate tumors in adult and pediatric patients with the rare condition, somatostatin receptor positive neuroendocrine tumors (NETs).

NETs are rare noncancerous (benign) or cancerous (malignant) tumors that develop in the hormone-producing cells of the body’s neuroendocrine system. These cells are found throughout the body in organs, such as the stomach, intestines, pancreas, lungs and other locations. NETs have receptors for somatostatin, a hormone that regulates the endocrine system. Ga 68 dotatate, a positron emitting analogue of somatostatin, works by binding to such receptors.

“Use of advanced imaging techniques to detect rare neuroendocrine tumors at an early stage in patients is critical,” said Libero Marzella, M.D., Ph.D., director of the Division of Medical Imaging Products in the FDA’s Center for Drug Evaluation and Research. “Netspot provides another diagnostic tool whose results will help clinicians determine the location and extent of the tumor. This information is important for planning the appropriate course of therapy.”

Netspot is supplied as a sterile, single-dose kit for preparation of Ga 68 dotatate injection for intravenous use. The uptake of Ga 68 dotatate reflects the level of somatostatin receptor density in NETs. This uptake can also be seen in a variety of other tumor types or other pathologic conditions, or might occur as a normal variant. The uptake of Ga 68 dotatate may need to be confirmed by histopathology or other assessments.

Three studies established the safety and effectiveness of Netspot. The first compared Ga 68 dotatate images of NETs to images obtained with an approved drug, and then confirmed with computed tomography (CT) and/ or magnetic resonance imaging (MRI); the second evaluated Ga 68 dotatate images using histopathology (the study of tissue changes caused by disease), or clinical follow up as reference standards; and the third evaluated patients with NET recurrence using Ga 68 dotatate images. The results of all three studies confirmed the usefulness of Ga 68 dotatate images in finding the location of the neuroendocrine tumors.

Netspot contributes to overall long-term cumulative radiation exposure, and patients should drink and urinate as often as possible during the first hours following administration to help reduce this risk.  No serious adverse reactions have been identified.

The FDA granted Priority Review and orphan drug designations for Netspot. Priority review status is granted to applications for drugs that, if approved, would be a significant improvement in safety or effectiveness in the treatment of a serious condition. Orphan drug designation provides incentives such as tax credits, user fee waivers, and eligibility for orphan drug exclusivity to assist and encourage the development of drugs for rare diseases.

Netspot is marketed by Advanced Accelerator Applications USA, Inc.

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.”

Speaker Spotlight – 2016 National Conference Edition Part 7

drmetz

David C. Metz, MD

Professor of Medicine
Division of Gastroenterology
Hospital of University of Pennsylvania
Philadelphia, PA

pennmedicine

Bio:

Dr Metz is Professor of Medicine and Associate Chief for Clinical Affairs in the Division of Gastroenterology at the University of Pennsylvania in Philadelphia, where he is director of the Acid-Peptic Disease Program and codirector of the GI Physiology Laboratory, the Swallowing Disorders Program and the Neuroendocrine Tumor Program.

He is actively involved in clinical research, patient care, and teaching of students, residents, and fellows. Dr Metz’s clinical research program is particularly active in acid-peptic conditions including hypersecretory states such as Zollinger-Ellison syndrome, Helicobacter pylori infection, nonsteroidal anti-inflammatory drug gastropathy, and gastroesophageal reflux disease. He also has particular expertise in the diagnosis and management of patients with functional and non-functional neuroendocrine tumors of the pancreas and alimentary tract. He has been a principal investigator on a number of trials evaluating upper gastrointestinal disease states. He is also active in national gastroenterology societies and was a prior member of the Liason Committee for Recertification of the American Board of Internal Medicine (American Gastroenterological Association representative) and the US Food and Drug Administration Gastrointestinal Drugs Advisory Committee. He is vice chair of the North American Neuroendocrine Tumor Society (NANETS)

Dr Metz earned his MBBCh (MD equivalent) from the University of the Witwatersrand in Johannesburg, South Africa. He moved to the United States in 1986 and pursued a residency in internal medicine at Albert Einstein Medical Center in Philadelphia. He completed a fellowship in gastroenterology in Washington, DC, in the combined Georgetown/Veterans Affairs Medical Center/National Institutes of Health (NIH) program. He remained on staff at the NIH for 2 more years as a senior staff fellow, performing basic research in pancreatic acinar cell secretion and clinical research in Zollinger-Ellison syndrome specifically.

In 1993, Dr Metz moved to Philadelphia in the role of Assistant Professor in the clinician educator track at the University of Pennsylvania. He was promoted to Associate Professor in 1998 and Full Professor in 2003.

To make an appointment, please contact:

Bonnie Bennett at (215) 349-5562

Perelman Center for Advanced Medicine                                                                        South Pavilion, 4th Floor                                                                                                        3400 Civic Center Boulevard                                                                                 Philadelphia, PA 19104                                                                                                            (800) 789-PENN (7366)

For more information on Dr. David Metz and Penn Medicine at the University of Pennsylvania, please visit their website here.

Dr. Metz at the 2016 National NET Patient Conference:

Topic: The Role of the Gastroenterologist in Diagnosing and Treating NETs

When: Friday, September 23th, 2016 at 10:15AM*

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. Metz and 19 other experts speak on Neuroendocrine Cancer! 

Registration is $125 per person including

  • Thursday’s Welcome Reception 
  • Breakfast, Lunch, and snacks for both Friday and Saturday
  • And keep your eyes out for some special prizes!

Registration does not include your hotel stay or travel expenses.

For more information and to buy your ticket, click here!!

*Time and Date are subject to change.

To check out some of our other speakers, click here!