The Countdown is ON!

The countdown is on as today we are just over ONE WEEK OUT from the 2016 National NET Patient Conference weekend in New Orleans, LA!!


Unable to attend? Subscribe to NETCancerAwarenessBlog for exclusive sneak peaks and updates about the 2016 National NET Patient Conference! Something tells me there will be some vlogging going on that will have some important information that you WON’T want to miss! =]

NCAN is so excited as we get our last minute details ironed out for you!

Look closely here for some addional details and events that have not yet been published:

Thursday- In addition to the opening session, which includes a patient panel whose panelists are medical professionals AS WELL AS patients you will enjoy a really exciting cooking demo featuring neuroendocrine cancer patient friendly recipes.

Friday- 5 PM – Grab a smoothie and a cookie made with neuroendocrine cancer patients in mind, courtesy of one of the conference sponsors, Novartis.


6 PM – join us for a light snack and networking while you wait for a private comedy show….



This event is sponsored by: NCAN Bandaid

Sunday- 8 AM to noon – Group Leaders Meeting. If you are a group leader and have not signed up yet, please call us ASAP at 866-850-9555 or email if you would like to attend. You MUST sign up today if you would like to attend.

Here’s a more detailed look:


Noon- Registration table open

1 pm – 4 pm- Thursday talks and patient panel

4 pm to 6 pm- Novartis Cooking Demo

6 pm to 9 pm- Welcome reception



7 am- Registration and breakfast

7:45 to noon- Morning general session

9:30 – 9:45 break

noon to 1 pm- lunch

1 pm to 5:15 pm- Afternoon general session

2:45 – 3:00 break

4:30 pm – 6:15 pm- NET-friendly smoothies and cookies provided by Novartis

6:00 pm – 7:00 pm- Pre-show snacks

7:00 pm – 7:45 pm- Comedy show- Laughter is the Best Medicine starring Steve Mazan



7 am- Breakfast

8 am – noon- Morning general session

9:30 – 9:45 break

noon – 1 pm- lunch

1 pm – 5:30 pm- Afternoon general session

2:45 – 3:00 break



8 am – noon   Group leaders’ meeting


Also, here is the agenda for our General Sessions:



A few more reminders:

  • Please bring extra layers of clothing! The conference rooms DO get cold, please be prepared!
  • For patients: please bring extra medication, in case of emergency! And take pictures of your medication bottles on your cell phone in case you were to lose them!
  • As always, the conference is a safe space for patients. It is a place for learning about a better quality and quantity of life. Please refrain from self-advertisement and solicitation at our conference. If you are caught soliciting, you will be asked to leave for the remainder of the conference without refund. NCAN and our sponsors thank you for understanding and helping us keep this space focused on what is important.

Keep your out for a post on Friday about some of my MUST SEEs and MUST HAVEs while in NOLA! Be sure to subscribe now to be the first to get it right to your inbox!

The Speaker Spotlight – 2016 National Conference Edition Part 5


Thomas O’Dorisio, MD

Professor of Medicine, Director of the Neuroendocrine Tumor Clinics Program



Dr. Thomas O’Dorisio is Professor of Medicine and Director of the Neuroendocrine Tumor Clinics Program in the Holden Comprehensive Cancer Center at the University of Iowa.   Currently 1700 patients with carcinoid and familial/sporadic neuroendocrine tumors in both children and adults are registered via an IRB approved consent form.  With Co-directors Dr. James R. Howe (Endocrine surgeon) and Dr. M. Sue O’Dorisio (Pediatric Oncology), there are seven dedicated multi-disciplinary neuroendocrine tumor clinics weekly that include a neuroendocrine tumor clinic for the Veterans Administration Hospital.  Multi- diagnostic and therapeutic modalities for these patients include the highly sensitive and specific 68-Gallium – DOTATOC PET scan.  We are currently analyzing the safety and efficacy data of 200 subjects who have had this scan.  Therapeutic advances include the registration trial of LU-177 –DOTA-Octretoate therapy, a multi-international institution protocol for progressive midgut carcinoid tumors.  We anticipate the first peptide receptor radio-nuclide therapy (PRRNT) Phase II trial in the United States with Y90-DOTA-(tyr)-Octreotide within the next two months.  We see between 16 and 24 new neuroendocrine patients monthly, and have 900-1200 neuroendocrine patient visits per year. Our Clinical-Clinical Research Center is modeled after the 21 or so European NET Centers of Excellence, dedicated to this rare cancer with a prevalence in the United States of about 110,000 patients and an incidence since 1989 that has risen by 500%.

To see his official University of Iowa Heath Care video profile, please click here.


BS, Regis College, Denver, Colorado

MS, Anatomy, Creighton University, Omaha, Nebraska

MD, Creighton University, Omaha, Nebraska

Internship, Internal Medicine, Creighton University

Residency, Internal Medicine, The Ohio State University, Columbus, Ohio

Fellowship, Endocrinology, The Ohio State University, Columbus, Ohio

Licensure and Certifications:

Medical License, Iowa Board of Medicine

Certification, The College of American Pathologists (CAP) Ohio

Certification of Accreditation, Department of Health & Human Services Health Care Financing Administration (HCFA) CLIA Laboratory

Certification, American Board of Internal Medicine

To make an appointment as a NEW patient, please call:

The Holden Comprehensive Cancer Center at the University of Iowa                        (319) 356-4200 Option #3, Ask for Molly Becker

University of Iowa Hospitals and Clinics                                                                       200 Hawkins Drive                                                                                                                    Iowa City, IA 52242                                                                                                                 (800) 777-8442

Dr. O’Dorisio at the 2016 National NET Patient Conference:

Topic: PRRT Trials in America: What’s New?

When: Friday, September 23rd, 2016 at 1PM*

Be sure not to miss Dr. O’Dorisio speak! And don’t miss him on our panel answering your questions!!

For more information on Dr. O’Dorisio and the Holden Comprehensive Cancer Center at the University of Iowa, please visit their website here.

SIGN UP NOW FOR THE 2016 NATIONAL NET PATIENT CONFERENCE in New Orleans, LA from September 22-24th to see Dr. O’Dorisio 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.

The latest on Peptide Receptor Radionuclide Therapy (PRRT) as of March 23, 2016

Happy Saturday, Zebra family! I hope everyone is having a great weekend!

As many may already know, because this is a week and a half later than I would’ve liked (Yay for being a new blog and having so much content to get up this week!), on March 23rd, 2016, there was some breaking news concerning PRRT here in the USA:

“AAA Opens Lutathera Expanded Access Program In U.S. to Eligible Patients And Announces Forthcoming NDA Filing to FDA and EMA

AAA today announced that the company has initiated an expanded access program (EAP) in the United States for the investigational product, Lutathera. Through the program, Lutathera is being made available for patients suffering from inoperable, somatostatin receptor positive, midgut carcinoid tumors, progressive under somatostatin analogue therapy. Healthcare professionals and patients can learn more about the Lutathera EAP by visiting (trial number: NCT02705313).” (Direct link here)

To read or download the whole article, click here.

For more information on Advanced Accelerator Applications (AAA), click here.

For those of you who would like to learn about PRRT, please read my intro to PRRT post for more information!


Tricia Wahmann-Knatz

Introduction to PRRT

What is PRRT? Peptide Receptor Radionuclide Therapy (PRRT) is a molecular targeted therapy used to treat the NET tumors such as gastroenteropancreatic NET tumors (Carcinoid/stomach, intestines, and pancreas), small cell carcinoma of the lung, and other tissues of the neuroendocrine system, such as pheochromocytoma (a rare tumor on the adrenal glands). The goals of PRRT are to treat symptoms, to slow or stop the progression of NET tumors, and improve overall quality of life. Candidates for PRRT are patients who have advanced NET tumors (mainly grades 1 and 2), are not candidates for surgery, and patients who have not had symptoms respond to other treatments.

So, how does it work? Tumor cells have peptide receptors on located on the outside. In NET tumors, this receptor is called the somatostatin receptor. A lab-created somatostatin protein (octreotide) is binded with a small amount of lutetium (a radioactive particle). When injected into the bloodstream, this mixture binds to the tumor via the somatostatin receptor and treats the tumor from the inside, delivering a high dose of radiation to the tumor.

*Please remember to discuss all medical options with a NET specialist. This is so important in finding the correct treatment plan for you.*

Here are some sources to learn more about PRRT:



Tricia Wahmann-Knatz