Creating awareness and providing a bridge to the NET medical community, resources and support for NET
cancer patients.
Listen to zebras talk.
The retirement of Dr. Woltering and HIS Remarkable legacy
Dr. Eugene Woltering
Head Zebra and Visionary, Researcher, Surgeon, Clinic Director, Diagnostician d'excellence, Sage, Humorist, Marketeer, Advocate. Father, Husband Proud Grandfather, Unsung Leader of NET Patients' Awareness movement.
Creator and Cheerleader of the "Zebra" as the NET icon
NOTE: NETs were known as carcinoid cancer until the 21st century
Last summer, Dr. Eugene Woltering retired. As a patient of Dr. Woltering's for well over a decade, I'd like to share my memories of Dr. "W", and of his legacy, both as an elite physician and a compassionate human being.
The NET (neuroendocrine tumor cancer) community held on to the hope that Dr. Woltering would not retire to his proverbial cabin in the woods or at the very least, he would distribute walkie talkies to his patients. As one of a select group of pioneering physicians whose calling became the nationwide NET cancer community, he is irreplaceable. Dr. W. has held a prominent role at the forefront of the diagnostic, treatment, and research movement to define and treat these diseases, and ultimately discover a cure. He also is at the top of a "physician "tree" as a mentor of young medical professionals; a number of whom are now practicing as the next generation of NET physicians/scientific leaders who are building upon Dr. W's legacy. Strong support for gathering a foundation of knowledge was necessary since very few doctors knew about NETs or how to treat them. The entire patient population was dependant upon specialists to treat them.
Another pioneering effort of his was supporting a patient advocacy movement resulting in the emergence of a powerhouse community of patients. This energy brought a strong buzz of awareness and recognition to the many patients and their supporters looking for answers. Resources and researchers developed a surprisingly strong foundation of knowledge, nationwide awareness and newly-minted groups of patient advocates. After all, we were the new guys on the block.
As a prominent researcher in the field of NETs and a member of the NOLANETs team of top-flight NET physicians, Dr. W. helped devise and refine algorithms (s) for both diagnostic and treatment processes. As a trained surgeon it was "surgery first", if possible, This became a mantra for the patient community replacing the "Wait and See" meme.
I personally had been turned down for surgery by five physicians before Dr. Woltering accepted my case and saved my life by operating (I had had an undiagnosed bowel blockage). One thing about NET patients (affectionately known as zebras-(see left-hand column); we all had/have bizarre disastrous stories to tell, which usually included a late diagnosis and the ubiquitous misdiagnosis. Toss in inappropriate treatments-or no treatment or intervention at all, and you have the picture.
On the direct patient communication side, Dr. W. has monitored 4 listservs and answers his cell phone 24/7; Each patient was welcome to call at any time. Dr. W. even found time to act as Honorary Medical Editor of Zebra Talk, the carry-along mini-encyclopedia produced by Philly NETs and The Patients' Project.
RESEARCH and the NOLANETs LABORATORY
The NOLANETs lab mission is to discover new treatments, procedures, and, ultimately, a cure for NETs.
The NOLANET's laboratory at LSU is a hotbed of activity - clinical papers, grant-funded research, clinical trials, an enormous patient database, and frozen tumor tissue, The laboratory team, led by Dr. Woltering, either discovered or was a contributing partner, for new or existing treatments or diagnostics to continue to drive the momentum forward.
One of the lab’s main objectives is to determine which drugs best limit tumor angiogenesis (blood vessel growth in any one patient). In the past, the research team has developed such novel treatment agents such as valproic acid and black raspberry in various forms and has received more than 18 patents.
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.
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.”
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
CLINICAL TRIAL FOR NET PATIENTS WITH LIVER INVOLVEMENT "RETNET"
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:
https://clinicaltrials.gov/ct2/show/NCT02724540
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.
LabCorp Processes
5‐HIAA Plasma Assay
TEST: 504510
CPT: 83497
Acronym for
5-hydroxyindoleacetic acid
Use
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.
Limitations
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.
For information:
We are a nonprofit. Please help us continue to publish noteworthy projects by donating to The Patients' Project (our parent non profit). This coming year we are planning a mini-conference, a patient project and a new version of ZEBRA TALK and we need your help. We've been publising in the community since 2007.
Signature Awareness Bracelet
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.
PENN MEDICINE: Abramson Cancer Center NET program
The last few years 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
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
The 68 Gallium Dotatate Scan (NETSPOT) is Available at 3 Philly Area Hospitals
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.
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.
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.
Fox Chase Cancer Center in Philadelphia developed 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. Upomn his retirement medical oncologist Dr. Neena Vijayvergia along with 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.
Patient-friendly Online Course Shows Patients How To Understand and Negotiate Medical Bills
For the newly diagnosed as well as old timers like myself: Join one of the list servs for NETS/carcinoid (below)
www.ACOR.org (carcinoid group-includes all NETs)
www://groups.yahoo.com/
www//groups.yahoo.com/lungnoids
There are also groups on Facebook.
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 edited by a long-time NET patient.
Message to Pharmaceutical (Research and Development): Keep the pipeline flowing for orphan diseases.
This article answers the question " Why are there so many new drugs for NETs?"
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.
Thanks to Berri Health which has been a contributor to Zebra Talk and Philly NETs.
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
Philadelphia PA
p 267 288 5642
info@philly NETs
Somatuline Depot (Lanreotide)
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 icon to read the prescribing information for Somatuline Depot (lanreotide)
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.
NET patients in the US number about 125,000 This is 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: Manufacturers of brand drugs
(analogs)
www.somatuline depot.com IBSEN
p 1+866 435 5677
www.us.sandostatin.com/index.jsp NOVARTIS
p 1+800 282 7630 Patient assistance NOW Oncology NOVARTIS
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.
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?
New data shows a reduction in time to diagnosis probably due to larger awareness and better testing and the development of new medical interventions by the pharmaceutical industry.
Mantras of a NET Patient
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YOU MUST SUSPECT IT TO DETECT IT.
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NORMAL IS NORMAL.
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FIGHT LIKE A ZEBRA.
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WEAR YOUR STRIPES PROUDLY.
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STABLE IS STABLE.
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IF YOU HEAR HOOFBEATS, IT COULD BE A ZEBRA.
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WAIT AND SEE...I DON'T THINK SO.
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KICK BUTT!
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.
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 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.
PhillyNETs Resource and Support Group is a program of
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.
Along with the dynamic back-up of a strong scientific team, the group produced volumes of influential, ground-breaking clinical papers, All together, the research, clinical, and surgical teams have produced more and 300 peer-reviewed* publications.
While partnering with an elite lab in California ( Interscience Institute) the team created the assays pancreastatin and neurokinin A which are valuable blood tests to follow NET cancer's progression/stability.
The tissue bank at NOLANETs is one of the largest for NET tumor tissue since the clinic has served and continues to serve one of the largest populations of NET patients in the United States. This tissue bank is shared with the NET cancer physician community at large.
CONFERENCES: Regional, national, and international, were opportunities to meet, speak with, and learn with Dr. Woltering. You could feel his unrelenting energy and focus on NETs.
Dr. Woltering has his own brand of philosophy for everything NETs. He was the de facto leader of "surgery first"- (if at all possible.) I say this with conviction since I was turned down by four surgeons who used the meme "Wait and See".
Across the metaphoric hall, NOLA's patient clinic has participated in a number of clinical trials on behalf of the disease community resulting in FDA approval of new treatment drugs as well as new treatments.
Dr. Woltering has his own brand of philosophy for everything NETs. He is the de facto leader of "surgery first"- (if at all possible.) I say this with conviction since I was turned down by four surgeons who used the meme "Wait and See". Dr. Woltering's comment to me was "So, when do you want your operation?
We learned that a sense of humor can be an integral part of any treatment of a serious disease.
All together, the research, clinical, and surgical teams have produced more than 300 peer-reviewed* publications.
All the pink zebras will always love and remember what you did for us. Many of us would not be alive today if not for your contributions, kind generosity and the caring you showed your patients.
You gave us our lives. Joyous thanks.