Neuroendocrine Tumors Featured in Society of Nuclear Medicine and Molecular Imaging Patient Program

Josh Mailman, President of the NorCal CarciNET support group and Chair of the Patient Advocate Advisory Board for the Society of Nuclear Medicine and Molecular Imaging (SNMMI), will give the Welcome presentation for the SNMMI Patient Education Day on June 9^th in Vancouver, British Columbia, Canada.

 

SNMMI has long been committed to supporting patients, partnering with patient advocacy organizations on issues of mutual interest and priority, and providing educational programs to help patients understand molecular imaging and its role in both diagnostic and therapeutic settings. For the third year, the SNMMI Patient Advocacy Advisory Board has developed a “Patient Program” to address key topics of interest to the patient and patient advocacy community. This program provides a unique opportunity to network with passionate advocates and leading experts in neuroendocrine tumors (NETs), lymphoma disease, and dementia.

Josh Mailman, Chair, SNMMI Patient Advocacy Advisory Board

According to Josh Mailman, “The SNMMI Patient Advocacy Advisory Board is dedicated to educating patients about nuclear medicine and molecular imaging so that they can make the best healthcare decisions for their individual needs. “  The program for the day includes a keynote speech by a patient on his journey with nuclear medicine and molecular imaging, general education sessions, and breakout sessions on the latest advances for NETs, lymphoma, and dementia.  A guided tour of the exhibit hall will give participants a first-hand look at the science and technology behind nuclear medicine and molecular imaging and therapy.

In the area of neuroendocrine tumors, the breakout session will feature the following:

• 

  Jackie Herman, CNETS Canada

  • Introduction and Welcome from Carcinoid Neuroendocrine Tumour Society Canada

Jackie Herman, President

• Patient Perspective – John Martin

• Theranostics – New Perspectives on Personalized Care for NETs

Richard P. Baum, MD, PhD

Richard Baum, MD, PhD

• Approaches to Imaging Neuroendocrine Tumors DOTA-NOC

Alexander (Sandy) McEwan, MD

Alexander (Sandy) McEwan, MD

• Updates on Imaging in BC for NETs Patients

Hagen Kennecke, MD of BC Cancer Agency

• Panel Q&A

• Focus Group – What are the barriers to adoptions of nuclear imaging and treatment for NETs

• Speed  Networking

For further information about the SNMMI Patient Education Day and to register, click here: http://www.discovermi.org.

Excel Diagnostics and Nuclear Oncology Center Selected For New Investigational PRRT Treatment and Gallium Scan for Carcinoid and Neuroendocrine Tumor Patients

For carcinoid, pancreatic neuroendocrine tumor, and other NET cancer patients seeking the most advanced nuclear medicine opportunities in  the United States, Excel Diagnostics and Nuclear Oncology Center  in Houston, Texas, in collaboration with the RITA Foundation and RadioMedix, has now received FDA permission for  clinical trial of the Ga-68 Octreotate PET/CT scan and is one of a select number of U.S. facilities to participate in the new  177Lu-DOTA0-Tyr3-Octreotate  Phase III clinical trial, also known as NETTER-1. Nuclear medicine is used for both diagnosis and treatment in neuroendocrine tumors (NETs).

Ebrahim S. Delpassand, MD,  Chairman and Medical Director of Excel Diagnostics, serves as Principal Investigator of the NETTER-1 clinical trial at Excel.  NETTER-1 is an international study and Excel Diagnostics is the first center in the United States to recruit and enroll patients and the only non-university center to participate in the trial. It is a multicenter randomized clinical trial of Lu-177 Octreotate PRRT  in patients with progressive midgut carcinoid.

Ebrahim S. Delpassand, MD

The NETTER-1 study will evaluate the efficacy and safety of Lutathera® compared to high dose Octreotide LAR in patients with inoperable, progressive, somatostatin receptor positive, midgut carcinoid tumors.  According to Dr. Delpassand, “patients will be randomized to receive high doses (60 mg) Sandostatin® LAR versus 30 mg Sandostatin® LAR plus Lu-177 octreotate.” The primary objective of the trial is the assessment of Progression-Free Survival (PFS).  Also being studied are safety, Objective Response Rate (ORR), Time to Tumor Progression (TTP), Overall Survival (OS), and Quality of Life (QoL).

Lutathera®, Lu-177 Octreotate, is a radiolabeled somatostatin analog that selectively targets somatostatin receptors which are over-expressed in differentiated neuroendocrine tumors. The Lu-177 is delivered directly into the tumor cell, acting like a Trojan horse.  A Trojan horse in cancer therapy is the use of nanotechnology where cancer-fighting particles are targeted only for the cancer cells, leaving healthy cells alone. Lutathera® also releases a gamma ray, which exits the body and enables physicians to image and evaluate the progress of the treatment via a SPECT (Single Photon Emission Computer Tomography) camera.

The Ga-68 Octreotate PET/CT scan that is being tried at Excel Diagnostics appears to be extremely promising.   (Changing Paradigms with Molecular Imaging of Neuroendocrine Tumors, Hoffman and Hicks, Discovery Medicine, July 2012). Preliminary results suggest that  the Ga-68 Octreotate PET/CT  has the following benefits:

•    False negative or positive results are rare
•    Lesions as small as 2-3 mm can be visualized
•    High resolution images increase the chance of localizing the primary site of the disease which can be hard to visualize on other types of imaging. This has enormous value in patients with functional tumors who can be potentially cured following removal of localized disease.

The Gallium-68 scan, says Dr. Delpassand, appears to be  a superior imaging tool because it provides the following:

•    excellent resolution of images,
•    the ability to quantify tumors and following therapy tumors can be measured by standardized uptake value (SUV) which is not available with an OctreoScan,
•    less radiation exposure than an OctreoScan,
•    significantly reduced time for the scan — the entire scan is done in 2 hours.

“The FDA has also granted permission to charge for this radiopharmaceutical under expanded access criteria and therefore, this will help coverage by the insurance companies,” adds Dr. Delpassand.

For further information about the Ga-68 Octreotate PET/CT scan or clinical trial participation at Excel Diagnostics, contact Ms. Susan Cork at 713-341-3203 or scork@exceldiagnostics.com.

OncLive TV Releases 2 More Videos in Neuroendocrine Tumors Series

Two new videos have been released in the OncLive TV series on carcinoid and neuroendocrine tumors (NETs), including pancreatic neuroendocrine tumors, and genetic syndromes that predispose people to develop pancreatic NETs such MEN1 (multiple endocrine neoplasia) and tuberous sclerosis.  A panel of medical experts discusses “Techniques for Diagnosing Neuroendocrine Tumors” and “The Genetics Behind Familial Neuroendocrine Tumors” in the most recent videos.

The panel includes carcinoid/NET specialists Dr. Matthew Kulke (moderator, pictured below), Director of the Program in Neuroendocrine and Carcinoid Tumors, Dana-Farber/Brigham and Women’s Cancer and Associate Professor of Medicine at Harvard Medical School in Boston, Massachusetts;  Dr. Rodney F. Pommier, Professor of Surgery and Surgical Oncologist, Oregon Health and Science University in Portland, Oregon; and Dr. James C. Yao, Associate Professor Department of Gastrointestinal Medical Oncology, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center in Houston, Texas; as well as Dr. Pamela L. Kunz, Assistant Professor, Stanford School of Medicine in Stanford, California.

Please note:  to see the videos below in a larger format, click on the YouTube logo in the bottom right corner of each video.

Techniques for Diagnosing Neuroendocrine Tumors focuses on the imaging techniques used for identifying NETs and locating the primary site. These include multiphasic contrast-enhanced CT, MRI, and octreotide scans. Dr. Pommier stresses that it is very important to identify the type of tumor as treatment options differ for carcinoid and pancreatic neuroendocrine tumors. Participation in clinical trials is also dependent upon the type of a patient’s tumor.

“There are some genetic syndromes that predispose people to get neuroendocrine tumors,” notes Dr. Kulke in The Genetics Behind Familial Neuroendocrine Tumors.  Most of these are associated with pancreatic neuroendocrine tumors.  According to Dr. Yao these syndromes include MEN1 (multiple endocrine neoplasia), tuberous sclerosis, neurofibromatosis, and Von Hippel-Lindau.  Dr. Kulke says that genetic counseling is “key” for patients and family members diagnosed with these genetic syndromes since this counseling may guide screening and tumor detection.

To view the previous videos in the OncLive TV Neuroendocrine Tumor series, CLICK HERE.

Multiple Endocrine Neoplasia (MEN) Seminar Scheduled at Mayo Clinic

The basics of MEN; thyroid, parathyroid, pancreatic, pituitary, and adrenal surgery; genetics of MEN; and patient chronicles are among the topics to be covered during the second MEN Seminar presented by American Multiple Endocrine Neoplasia Support (a division of the Hageman Foundation) in collaboration with the Mayo Clinic in Rochester, Minnesota.  The day-long seminar will be held on Friday, June 7, 2013 at the Mayo Clinic.  The DoubleTree Hotel has set aside a block of rooms at a special rate for seminar guests staying at the hotel.

The program will both serve to educate patients, family members and medical personnel and to provide an opportunity to meet others with MEN in a supportive environment:

 7:30 am               Registration and Breakfast

 8:00 am               Foundation Welcome by Linda Hageman, RN

 8:10 am                Basics of MEN by Dr. Mark Lewis 

 9:10 am               Thyroid & Parathyroid Surgery by Dr. David Farley

 9:35 am                Pancreatic Surgery by Dr. Kaye Reid Lombardo

 10:00 am              Pituitary Surgery by Dr. Fredric Meyer

 10:25 am              Adrenal Surgery by Dr. David Farley

 10:50 am              Hospital & Surgical Care by Surgical Care Nurses

 11:30 am              Free Time & Independent Lunch Break

 1:00 pm                Simulation Center Tour by Dr. David Farley

Dr. Farley explains the Whipple procedure in the video below. Click on the YouTube logo in the bottom right corner to see the video in a larger size.

 2:00 pm                Genetics of MEN, McKinsey Goodenberger, Dr. Salman Kirmani

 3:00 pm                Break

 4:00 pm                MEN Long-term Follow-Up Care by Dr. Kurt Kennel

 4:30 pm                Patient Chronicles by Linda Hageman, RN

 4:45 pm                Questions & Answers and Conclusion

 5:00 pm                Seminar Adjournment

 5:30 pm                Hageman Foundation Reception

Multiple endocrine neoplasia (MEN) syndromes received their name because they predispose people to develop tumors of the endocrine glands. The endocrine system is comprised of glands that secrete hormones into the bloodstream that control numerous processes within the body. The endocrine system is instrumental in regulating mood, growth and development, metabolism, as well as sexual function and reproductive processes.

MEN graphic from Wikipedia

The major glands of the endocrine system affected by the MEN syndromes are the pituitary, thyroid, parathyroids, adrenals and pancreas. Currently, there are two distinct MEN syndromes, MEN1 and MEN2. In some ways, the two syndromes are similar, but there are important differences.

MEN1 is an inherited disorder that causes tumors in the endocrine glands and the duodenum, the first part of the small intestine. MEN1 is sometimes called multiple endocrine adenomatosis or Wermer’s syndrome, after one of the first doctors to recognize it. MEN1 is rare, occurring in about one in 30,000 people. The disorder affects both sexes equally and shows no geographical, racial, or ethnic preferences.

The tumors associated with MEN1 are usually benign, meaning they are not cancerous. However, they can disrupt normal function by releasing hormones or by crowding nearby tissue. Eventually, about half of people with MEN1 will develop a cancerous pancreatic or carcinoid tumor.

Multiple endocrine neoplasia type 2 (MEN2) is characterized by a very high risk of developing medullary thyroid cancer (MTC). Individuals with MEN2 have a greater than 95% chance of developing MTC in their lifetime. MEN2 is divided into three clinical subtypes: MEN2A, MEN2B, and Familial Medullary Thyroid Carcinoma.

To read more about MEN, visit the Mayo Clinic’s website for information about Type 1 at http://www.mayoclinic.org/men1,  about Type 2 at cancer.net, oncologist-approved cancer information from the American Society of Clinical Oncology, or the National Endocrine and Metabolic Diseases Information Service by clicking here http://endocrine.niddk.nih.gov.

Guests staying at the DoubleTree Hotel (a two-block walk to the Mayo Clinic) will have free shuttle service to area locations.  There is also transportation to and from Minneapolis (Mall of America and Minneapolis Airport) and Rochester Airport for a fee.

For additional information about the Multiple Endocrine Neoplasia (MEN) Seminar at the Mayo Clinic call American Multiple Endocrine Neoplasia Support, http://amensupport.org, at 865-238-5842 or toll-free at 866-612-8579.  Be sure to also visit their website about the Whipple Procedure at www.mywhipple.org.  Register for the seminar online here: http://www.amensupport.org/men-seminars/men-seminar-registration/

New OncLive TV Series Focuses on Neuroendocrine Tumors

Carcinoid and neuroendocrine tumors (NETs), including pancreatic neuroendocrine tumors and even more uncommon NETs such as goblet cell carcinoid and mixed adenocarcinomas, are discussed by a panel of medical experts in this new video series from OncLive TV.

The panel includes carcinoid/NET specialists Dr. Matthew Kulke (moderator, pictured below), Director of the Program in Neuroendocrine and Carcinoid Tumors, Dana-Farber/Brigham and Women’s Cancer and Associate Professor of Medicine at Harvard Medical School in Boston, Massachusetts;  Dr. Rodney F. Pommier, Professor of Surgery and Surgical Oncologist, Oregon Health and Science University in Portland, Oregon; and Dr. James C. Yao, Associate Professor Department of Gastrointestinal Medical Oncology, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center in Houston, Texas; as well as Dr. Pamela L. Kunz, Assistant Professor, Stanford School of Medicine in Stanford, California.

Please note:  to see the videos below in a larger format, click on the YouTube logo in the bottom right corner of each video.

Neuroendocrine Tumors:  Introduction and Overview is the first episode in the series.  What are the differences in NETs?  Dr. Pommier talks about the many types of neuroendocrine tumors and the differences between carcinoid and pancreatic neuroendocrine tumors.  “There is so much terminology that confuses so many people,” says Dr. Pommier.  There is a difference in the incidence between these groups with carcinoid tumors occurring annually in 1 in 100,000 people while pancreatic NETs occur in 1 in a million people. Do all carcinoids behave the same way?  Dr. Yao notes that within carcinoid tumors the prognosis can vary significantly, with some tumors being far more aggressive than others.  The presentation of these tumors varies as well and carcinoid tumors are not usually diagnosed until symptomatic.

What are the key characteristics when looking at a pathology report that tells the physician if the NET tumor is going to be slow-growing or more aggressive?  The Histological Classification of Neuroendocrine Tumors, the second episode in the series, looks at the differences in the clinical behavior of NETs based on the site of origin and the biological characteristics of the cells. Dr. Kunz talks about using mitotic count and Ki67 to determine if NETs are indolent (slow-growing) or more aggressive and how tumors are determined to be low, intermediate, or high grade. These are important in determining how to treat a patient. Dr. Yao says it is important to consider if the tumors are malignant or benign.  In the low-grade tumors, there is a question about which tumors could be considered benign.  Tumor size is a key factor. According to Dr. Pommier, the primary site of the tumor plays a role in its aggressiveness.  In the small bowel, tumors are generally considered malignant, even when they are small.

Biomarkers, blood and urine, are used for diagnosis, prognosis, and how to treat patients, says Dr. Yao. The Role of Biomarkers in Neuroendocrine Tumors is the third episode in the series.    Dr. Yao selects biomarkers based upon how the patient is presenting.  For a pancreatic neuroendocrine tumor, for example, he is guided by the symptoms to determine which biomarkers should be checked. These symptoms include hypoglycemia with weight gain, diarrhea and reflux, profound diarrhea, and a rash or diabetes.  If carcinoid syndrome is suspected Dr. Yao uses the 5HIAA test to measure serotonin levels over a 24-hour period as part of the diagnostic workup but this marker alone is not enough to make a conclusive diagnosis. Dr. Pommier also targets biomarkers very specifically for each patient.

Dr. Pommier describes the Challenges in the Diagnosis of Neuroendocrine Tumors in the fourth episode of the series.  He studied the records of 150 of his abdominal carcinoid patients to determine the length of time from presentation of symptoms to proper diagnosis.  96.5% of these patients received a NET diagnosis approximately 6.5 years after presenting with symptoms, with some patients waiting up to 20 years before being diagnosed.  Dr. Pommier found approximately 35 initial diagnoses for these patients including Irritable Bowel Syndrome, lactose intolerant, and celiac sprue to the patient is “just plain crazy.” He attributes this delay in diagnosis to a combination of the lack of awareness by community physicians to the characteristics of the disease. “If you don’t suspect it, you can’t detect it.”

New Online Pancreatic Neuroendocrine Tumor (pNET) Support Community

There’s a wonderful new resource for pancreatic neuroendocrine tumor (pNET) patients and their loved ones at Inspire, the creator of online health and wellness communities for patients and caregivers, in partnership with national patient advocacy organizations:  http://pnet.inspire.com.

As a member of this online support community you can:

• Meet others dealing with pNETs, both patients and caregivers
• Learn what to expect, from diagnosis to treatment
• Write about your experiences
• Start a guestbook for family and friends
• Maintain complete control of your privacy

The organizations that have partnered with Inspire for the Pancreatic Neuroendocrine Tumor Support Community are the Carcinoid Cancer Foundation, Carcinoid Cancer Awareness Network, Caring for Carcinoid Foundation, the New Jersey Carcinoid Cancer NETwork, and NANETS.

Among the recent discussions in the Pancreatic Neuroendocrine Tumor Support Community are:  the Gallium 68 scan versus the Octreoscan, updates in pancreatic cancer research, clinical trials for pNETs, Sunitinib malate for the treatment of pancreatic neuroendocrine tumors, and upcoming NET patient conferences.

Join today – it’s free and takes only a minute to sign up: http://pnet.inspire.com.

“In just one day, I’ve felt surrounded by hope, love, and the exquisite feeling that I was not alone.”

I Have Cancer. And I’ve Never Felt Better!

Imagine nine years of debilitating gastrointestinal illness; misdiagnoses from doctors that include gastroparesis, pancreatitis, functional dyspepsia, Irritable Bowel Syndrome (IBS), and being told to reduce the stress in your life; a battery of tests such as endoscopy, colonoscopy, MRI, and an octreoscan; and a variety of medications – only to still feel horribly ill.  Meet Tracy Krulik, author of the newly published I Have Cancer. And I’ve Never Felt Better!, who has overcome these challenges to lead a healthier, happier, and more balanced life.  She chronicles her journey in her book which has received rave reviews from readers.

When doctors finally correctly diagnosed Tracy in 2007 with a pancreatic neuroendocrine tumor, the cancer had already spread to her liver and chest.  Following surgery on November 5, 2007 for removal of her primary tumor, on the tail of the pancreas, as well as half of the pancreas and her spleen, Tracy took back her health.

Pancreatic neuroendocrine tumors (pNETs) can be confused with pancreatic cancer, or adenocarcinoma, a more aggressive disease.  These rare cancers are usually more slow-growing.  They form in hormone-making cells (islet cells) of the pancreas.  Pancreatic NETs may or may not cause symptoms depending upon if they are functional, making hormones such as insulin, gastrin or glucagon and causing symptoms, or nonfunctional where they make substances but do not cause symptoms.  The late  Steve Jobs, former CEO of Apple, is perhaps the most well-known individual to have been diagnosed with an islet cell pancreatic neuroendocrine tumor (NET) for which he had surgery in 2004, followed by a liver transplant in April 2009.

Critical needs in the carcinoid and NET cancer community are awareness and early diagnosis.  Over 50% of carcinoid/NET cancer patients are incorrectly diagnosed and treated for the wrong disease.  From the initial onset of symptoms the average time until proper diagnosis is 5 to 7 years.  It is during this time that the cancer can spread.  Tracy Krulik’s story illustrates these points.

Describing herself as the “CEO of my health,” Tracy says she lives with cancer as a chronic disease. She is no longer a workaholic, has changed her diet dramatically, and now exercises five to seven days a week. She acknowledges that she will always have to face challenges in life but does so head on with an extraordinarily positive and upbeat attitude.

Here are some of the reviews for I Have Cancer.  And I’ve Never Felt Better!

FASCINATING

“. . . a fascinating read. I thought it would be a basic book about surviving cancer. I was wrong. It was a heartfelt and informative book, yes, but it was impossible to put down. I simply needed to know what was going to happen next. When the author talked about her experience with the many doctors, i wanted to scream at them and when she wrote about her experience with long distance bike races, i wanted to cheer her on. I to , have had to deal with cancer, hypoglycemia and asthma but it is hard to explain to others what those experiences are truly like to live with. The author did a wonderful job of describing her feelings as well as her frustrations. I will be sharing the name of this book with my many friends and family living with cancer or care-giving a cancer patient.” –KCagle

AWESOME READ

“Tracy’s humor abounds in this compelling story about her misdiagnosis and fight to gain power over cancer. I found myself laughing out loud at several points – great writing style will do this to a person! I respect her frankness and honesty – and admire her positivity and determination.” – Me

EXCELLENT!!

“I loved this book on Kindle. Tracy tells it like it is and takes no prisoners! She shares experiences about her cancer journey from the heart, head and everywhere in between all the while injecting humor. I expected more of a survivor theme but got a great story instead ” – Susan Kirby

From now through March 31, 2013 interested individuals can enter the Goodreads giveaway for an autographed copy of Tracy’s book.  CLICK HERE to enter to win. Goodreads gives readers the opportunity to “Meet your next favorite book.”

To purchase a paperback or Kindle copy of I Have Cancer. And I’ve Never Felt Better! through Amazon, CLICK HERE.