Why the zebra?
In the medical community the term “zebra” is universally understood as a reference to a rare disease. Physicians are taught that the core tenant of medical diagnosis is that the simplest explanation is usually the best, that is, it is generally more productive to look for common, rather than exotic causes for medical problems. Hence the phrase, "If you hear hoofbeats, think horses, not zebras.”
Zebra Talk is sold out.
Thank you to the members of our NET community for making Zebra Talk an awesome success. It has become a valuable resource for the NET community.
Click the pdf icon for a preview of what's inside Zebra Talk. (PDF format)
Your zebra book is so well written and informative; I thought I knew a lot, but learned so much more"... Liz, Wayne PA
Your resource for NET information
5‐HIAA Plasma Assay
Plasma 5-hydroxy-indoleacetic acid
(5HIAA or 5-HIAA) is a metabolite of serotonin that can be elevated as a
result of carcinoid tumors/carcinoid syndrome.
This test was developed, and its performance characteristics
determined, by LabCorp. It has not
been cleared or approved by the US
Food and Drug Administration.
The 68 Gallium Dotatate Scan (NETSPOT) is Available at 3 Philly Area Hospitals
PENN Medicine's Abramson Cancer Center and NET program
Penn's Abramson Cancer Center has its 68gallium dotatate scan (NETSPOT) up and running. There are no insurance issues since the NETSPOT kit has been approved by insurance. It is not in stock so it must be ordered. This editor had one there recently and it went very smoothly. The results are quite a contrast to the OctreoScan. Call Bonnie Bennett at 215 349 8222 to find out how to arrange for one.
Here's something of interest if you're having a surgical procedure or anything else that requires anesthesia at the University of Pennsylvania. Dr. Douglas Fraker, the surgeon specialist for NETs, can arrange an anesthesia consult with a member of his special NET surgical team. This editor has several lung diseases and really appreciates this "concierge" service.
Abington PET/CT of Willow Grove Announces 68Gallium Pet Scan (NETSPOT) For NET Patients
CLINICAL TRIAL FOR NET PATIENTS WITH LIVER INVOLVEMENT
Let's rally and support this trial. Its purpose is to collect data to prove or disprove if one directly targeted liver treatment is better than another.
Randomized Embolization Trial for NeuroEndocrine Tumor Metastases To The Liver Abramson Cancer Center of the University of Pennsylvania in Philadelphia and the NOLA NET program in New Orleans LA (Dr. Woltering) are two of the sites hosting a new clinical trial now recruiting participants. There will be additional sites. The link is:
This is the first time liver embolization treatments have been compared to each other to observe whether or not one treatment is more effective than another. The applicants must not have had a previous embolism.
The Principal Investigator is a NET "fav", interventional radiologist, Dr. Mike Soulen at the University of Pennsylvania/Abramson Cancer Center. The contact number is 1+855-216-0098.
NOLA Net Clinic's contact number is 504.464.8500. (Although Dr. Woltering's team members are part of the Trial, Dr. Woltering is not.) It is an interventional radiology project.
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Abington Jefferson Health now has its 68Gallium NETSPOT scan available for NET patients.
The PET/CT facility is a stand-alone building and only provides PET and CT scans. It is located at Abington's Schilling Campus, 2701 Blair Mill Road, Suite 9, in Willow Grove. Its convenience is unbeatable - nearby access to the PA Turnpike, Rte. 611 and just minutes from Abington's main hospital campus. To schedule a scan call 215 481 3377. There are dedicated PET/CT patient coordinators to schedule all PET/CT exams. How great is that?
SInce Abington Hospital is now a part of the Jefferson Hospital Health System, access to all providers and services at Jefferson are available to Abington patients.
Fox Chase Cancer Center Welcomes You to Their NET Program
Fox Chase Cancer Center in Philadelphia is developing a new NET cancer program, although the Center has treated NET patients for quite a while. Dr. Paul Engstrom, retired Vice Chair of the Department of Hematology/Oncology at Fox Chase, an America Top Doctor, and Special Advisor to the President,spear headed the program, along with medical oncologist Dr. Neena Vijayvergia and a multidisciplinary team.
For patients with neuroendocrine tumors, Fox Chase is one of the few medical centers in Pennsylvania that offers the Gallium-68 dotatate PET/CT scan.
Fox Chase also has a "Care Connect Program" to make it easy for patients to find the right primary medical provider in their community. Care Connect is collaboration between Fox Chase Cancer Center and community physicians.
To schedule an appointment, or to find more information, please call 888-FOX-CHASE (888-369-2427), or visit FoxChase.org.
Expanded Access Program for
Investigational Drug Lutathera
An Expanded Access Program (EAP) in the United States for the investigational drug, Lutathera, has begun at several institutions. Through this program Lutathera is being made available to patients with “inoperable, somatostatin receptor positive, midgut carcinoid tumors, progressive under somatostatin analog therapy.” THE LIST OF EXPANDED ACCESS PROGRAM FACILITIES IS AT THE BOTTOM OF THIS PDF PRESS RELEASE.
From ClinicalTrials.gov: EXPANDED ACCESS is a process regulated by the Food and Drug Administration (FDA) that allows manufacturers to provide investigational new drugs to patients with serious diseases or conditions who cannot participate in a clinical trial. One of several Study Types.For more information on Expanded Access programs, visit the Expanded Access: Information for Patients page on the FDA Web site". Click Here.
The process is regulated by the Food and Drug Administration (FDA) that allows manufacturers to provide investigational new drugs to patients with serious diseases or conditions who cannot participate in a clinical trial.
For more information on Expanded Access programs, visit the Expanded Access: Information for Patients page on the FDA Web site". Click Here.
FDA Approves Lexicon Drug Xermelo (Telotristat Ethyl) 250mg as First and Only Oral Treatment for Carcinoid Syndrome Diarrhea in Cancer Patients With Metasatic Neuroendocrine Tumors
Click on the PDF icon to read the press release.
What is NANETS?
"The purpose of this professional organization is to improve neuroendocrine tumor (NET) disease management through increased research and educational oppportunities". Their website is definitely worth a look-see. This link will take you to their Guidelines page.
Did you know that the National Cancer Institute (NCI) is the federal government's principal agency for cancer research and training. It is part of the National Institutes of Health (NIH), which is one of 11 agencies that comprise the Department of Health and Human Services (HHS). A real tongue twister.
For the newly diagnosed as well as old timers like myself: Join one of the list servs for NETS/carcinoid (below)
(carcinoid group-includes all NETs)
There are also groups on Facebook.
Patient-friendly Online Course Shows Patients How To Understand and Negotiate Medical Bills
One of the newest resources for helping patients who are struggling with their medical bills and need support is miVoyce. Those interested can join their on-line training site and its community of advocates at www.miVoyce.com . Philly NETs and The Patients' Project are exploring ways to work together with miVoyce to support the patient community.
These are the codes you see on your lab prescriptions. If your PCP or specialist isn't familiar with the new codes, you can print the list. If not coded properly your insurance company can reject the claim.
The BUZZ About Zebra Talk
"Zebra Talk was an all inclusive resource of what we needed. As soon as I received the book, I knew I should have purchsed more to send to the doctors who treated my husband for carcinoid. This is a great resource for patients, physicians and caregivers. In a world where time can be of the essence, the handbook saved us a lot of time and reinforces the importance of becoming your own health advocate and being better informed about this rare, and sometimes aggressive disease." ................ SGK, caregiver
Our website is filled with a selection of information that is always relevant, practical, and managed by a long-time NET patient.
Philly NETs is a resource and support group for NET (neuroendocrine tumor cancer) patients in the greater Delaware Valley region(Philadelphia's surrounding counties.)
Join Our Group
p 267 288 5642
"On December 16, 2014, the U. S. Food and Drug Administration approved lanreotide (Somatuline Depot Injection, Ipsen Pharma) for the treatment of patients with unresectable, well or moderately differentiated, locally advanced or metastatic gastroenteropancreatic neuroendocrine tumors (GEP-NETs) to improve progression-free survival. "
Click iconto read the prescribing information for Somatuline Depot (lanreotide)
Zebras Kick Butt. It's What We do.
Signature Awareness Bracelet
NET patients are about 120,000 strong in the United States (an educated estimate since many of us are diagnosed in the late stages of disease progression and also misdiagnosed all too frequently). When we bark - zebras don't whinny or neigh - we are heard, but not nearly enough.
Our community needs research funding desperately; there is no cure, and currently only one medical treatment called octreotide. Ours is an opportunistic cancer so it can call home wherever biological conditions are most inviting. Neuroendocrine tumors are the only cancers that if "active or functional" can create quite a disruption in your biological systems with their excessive hormone production. Some of our medical researchers suspect that these cancers can open the door to other cancer treatments and cures.
Quick Links to manufacturers of brand na
p 1+866 435 5677
A New Audience for Zebra Talk
Philly NETs has been working with companies that train pharmaceutical representatives
and recruit patients for pharmaceutical surveys related to neuroendocrine tumors. We have started a database of those patients willing to participate in these outreach efforts to help these professionals to understand the NET spectrum of diseases. This will strengthen the information links between patients, their circle of support and the community-at-large, and help the primary care physician(PCP) information stream to become a more powerful tool to support the patient on the NET journey.
If you have been recently diagnosed, you're not alone. A rare disease diagnosis USUALLY brings about the reaction " I have what?"
We'll help support you as you navigate through the system and find resources that will give you valuable insight into making informed decisions for your care and treatment. Although it doesn't seem possible now, and is quite overwhelming, you will gain knowledge and the confidence as you journey through the NET medical community.
What people are saying about Zebra Talk.
"I keep my Zebra Talk on my desk as a reference. I also carry it with me in my purse so I have it when I need to share information about carcinoid. What an awesome book." ... J.Anthony
"Suzi, I didn't expect anything but a great resource from you and you delivered." B. Warner...
"...your book is so informative. I am really enjoying reading it. We certainly hope to use it to help prepare our NET patient surveys..." Dee A.
...Suzie, what a great idea, and much, much needed in the medical world...if each group of PCPs would have this, they may save people...
...I am proud to say I had a tiny tiny bit to do with this project. Suzi hit the ball outta the park with this handbook. If you don't look at and really read this you are making a big mistake. This is a real reference work and is written so that it is fun to read. Atta girl Suzi... Dr. Eugene Woltering
"This is the best handbook I've seen written for patients. It touches on the entire spectrum of NET diseases and inclues a thorough resource link section..." B. Corrington
Listen to zebras talk.
Did you know that statistics show the time to a correct diagnosis for NET cancer can be over five years from the onset of the initial symptoms?
Remembering Deb Kilmartin. Her spirit moves along with the current of the great waters around Ireland.
Deb was the co-founder of this group, a modest, generous woman. She is missed.
We're different but when we're a herd & we're "heard" we're awesome.
Our group members network with patients who have similiar manifestations of these diseases. Our group leader, Suzi Garber is a patient liaison and advocate for all NET patients of the Abramson Cancer Center in Philadelphia at the Hospital of the University of Pennsylvania, Fox Chase Cancer Center, Philadelphia, Abington Hospital, and Jefferson Hospital and its affiliates in Philadelphia.
PhillyNETs Resource and Support Group is a program of
Mantras of a NET Patient
YOU MUST SUSPECT IT TO DETECT IT.
NORMAL IS NORMAL.
FIGHT LIKE A ZEBRA.
WEAR YOUR STRIPES PROUDLY.
STABLE IS STABLE.
IF YOU HEAR HOOFBEATS, IT COULD BE A ZEBRA.
WAIT AND SEE...I DON'T THINK SO.
Message to Pharmaceutical (Research and Development): Keep the pipeline flowing for orphan diseases.
This article is the answer to the question " Why are there so many new drugs for NETs?"
In Memory of our Friends - Deb Kilmartin, Co-founder, PhillyNETs
Melva Conquest, Natalie Tuttle, A.J. Catone, Shirley Jelinik, Bliss (Candy) Warner, Lynn Cohen and David Keithley
821 Meadow Drive, Warminster PA 18974 t 1+267.288.5642
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