Gallium-68 Scan Coming to NOLANETS for Carcinoid and Neuroendocrine Tumor Patients

Dr. Eugene A. Woltering has announced that the Gallium-68 DOTATATE PET/CT scan is going to be available beginning in the summer of 2014 through The New Orleans Louisiana Neuroendocrine Tumor Specialists (NOLANETS) Neuroendocrine Tumor Program at Ochsner Medical Center in Kenner, Louisiana. This program is an affiliation between Louisiana State University Health Science Center and Ochsner Medical Center.

Used in Europe and Australia, the Gallium-68 (Ga-68) DOTATATE PET/CT scan is a high-resolution scan, able to detect tumors not seen on MRI, PET, CT, or Octreoscans. Because the Gallium agent binds very strongly to the somatostatin receptors 2 and 5 of the neuroendocrine tumor cells, it can more effectively detect very small tumors and metastases. This is very important for NET patients as from the initial onset of symptoms — including gastrointestinal pain, flushing, diarrhea, and asthma-like wheezing — the average time to proper diagnosis exceeds 5 years. It is likely that tumors will spread (metastasize) and grow during this time.

Dr. Richard J. Campeau (pictured), Clinical Professor of Radiology (Nuclear Medicine) Dr. Richard J. Campeau is the Principal Investigator of the soon-to-open Gallium 68 clinical trial for neuroendocrine cancer patients at Ochsner Medical Center in Kenner, Louisianaand Internal Medicine (Cardiology) at LSU and Tulane University Health Sciences Centers, is the NOLANETS physician who will be the Principal Investigator for this study. The study is approved for approximately 250 subjects over 5 years.

Crediting many groups in the United States for their expertise and assistance, including support from carcinoid/NET specialists Dr. Eric Liu and Dr. Thomas O’Dorisio, Dr. Campeau’s team has received approval from the Food and Drug Administration (FDA) of their IND (Investigational New Drug application) for the Gallium-68 scan clinical trial. The institutional review board (IRB) at Ochsner Medical Center has approved the Gallium-68 clinical study and approval from the IRB at LSU is pending. “Just a few final nuts and bolts to be completed,” says Dr. Woltering, before all is in place to move forward with the study.

What’s next? The equipment needs to be ordered but the finances have been approved from the Ochsner administration, notes Dr. Woltering. At this time all Gallium-68 scans are considered experimental, pending FDA approval in the future. For those who receive the scan, their insurance companies will be billed or patients will be billed individually. The cost of the scan is approximately $4,000.

“So with much happiness and a big kudos to all of the teams who made this day possible,” says Dr. Woltering, “come and get the Gallium-68 scan at NOLANETS!”

Gallium-68 clinical trial for neuroendocrine cancer patients soon to open at Ochsner Medical Center in Kenner, Louisiana

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Luncheon with the Experts in New York City — Carcinoid and Neuroendocrine Tumor Patients Are Invited!

 

The Big Apple Noids support group invites you to join fellow carcinoid and Luncheon with the Experts for Carcinoid and Neuroendocrine Tumor Patients in New York Cityneuroendocrine tumor (NET) patients and three medical experts for lunch on Sunday, May 4 from 12:30 to 3:30 pm in a private dining room at Dorrian’s restaurant in Manhattan (1616 2nd Avenue, corner of 84th Street). This is a unique opportunity to share experiences with others who have similar concerns and to hear from expert physicians in an informal setting on issues ranging from NET cancer treatments and surgery to carcinoid heart disease to follow-up testing and new developments.

Following an extremely successful luncheon last year, the maximum number of participants has been expanded to 25 per meeting. While there is no charge for admission, interested individuals must register by email or telephone on a first-come, first-served basis. The luncheon will be moderately priced and will be the only charge for attending.

Luncheon with the Experts for Carcinoid and Neuroendocrine Tumor Patients i

The experts for the luncheon (pictured left to right) will be Dr. Richard R.P. Warner, world-renowned carcinoid/NET specialist, Director of the Center for Carcinoid and Neuroendocrine Tumors at Mount Sinai Hospital in New York City and Medical Director of the Carcinoid Cancer Foundation; Dr. Celia M. Divino, surgeon, Chief of the Division of General Surgery and Professor of Surgery at Mount Sinai; and Dr. Jerome S. Zacks, cardiologist, Assistant Clinical Professor of Medicine at The Mt. Sinai Medical Center and founder of the Carcinoid Heart Center in New York City.

Attendance at the May 4th luncheon is limited. Please contact Emily Zuckerberg as soon as possible to make your reservations: ezuckerber@aol.com or 917-689-1980  (no more than 2 people per indication of interest).

 

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Carcinoid and Neuroendocrine Tumor Specialist Dr. Eugene A. Woltering Named Chair of AJCC Expert Panel

Eugene A. Woltering, MD, The James D. Rives Professor of Surgery and Neuroscience Dr. Eugene A. Woltering Selected to Chair AJCC  Neuroendocrine Tumors Expert Paneland Director of Surgical Research at LSU Health Sciences Center/Ochsner in Kenner, Louisiana, has been selected to serve as Chair of the Neuroendocrine Tumors (NETs) Expert Panel for the American Joint Committee on Cancer’s (AJCC)  Cancer Staging System, 8th Edition.

Emily Bergsland, MD, a NET/gastrointestinal oncology specialist at the UCSF Helen Diller Comprehensive Cancer Center in California, has been named Vice-Chair of the Neuroendocrine Tumors panel.

“The opportunity to chair the NETs panel for the 8th edition of the AJCC staging manual is a once in a lifetime event,” says Dr. Woltering. “The 8th edition will continue to use the Tumor Node Metastasis (TNM) staging system as the backbone of neuroendocrine tumor  staging. However, unlike previous editions, the 8th edition will add imaging, immunohistochemistry, biomarkers and genetics into the staging system. Our hope is that these new additions will make tumor staging a dynamic, changing process rather than a static event.”

The American Joint Committee on Cancer serves clinicians and the surveillance community through the most comprehensive anatomic staging data available, the Cancer Staging Manual and Cancer Staging Atlas. These publications are “recognized as the authoritative guides for cancer staging information and are used by tens of thousands of medical professionals every day.”

American Joint Committee on Cancer Names Dr. Eugene Woltering to Chair Neuroendocrine Tumors Expert PanelAccording to the AJCC, “Evidence-based anatomic staging continues to be the critical factor to understanding cancer and treating patients. New breakthroughs in oncologic, radiologic, pathologic and molecular science are opening up ever-more promising possibilities for precisely defining a prognosis and recommending a treatment based on a patient’s individual data.”

Cancer staging determines how much cancer is in the body, where it is located, the severity of a person’s cancer based on the size of the primary tumor and on the extent cancer has spread in the body. The AJCC describes the four different types of staging as clinical staging, pathologic staging, post-therapy or post-neoadjuvant therapy staging, and restaging. Read more here.

With an anticipated publication date in late 2016, the 8th edition of the Cancer Staging Manual is for patients diagnosed with cancer after January 2017. The manual will incorporate advances made in cancer research, staging, diagnosis, and treatment since the seventh edition was published in October 2009. The editorial development process will involve a collaboration of approximately 500 cancer experts from around the world, and will cover more than 60 primary disease sites.

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New OncLive TV Series Focuses on Pancreatic Neuroendocrine Tumors

Pancreatic neuroendocrine tumors, also known as pNETs, form in the hormone-making cells (islet cells) of the pancreas. In this new OncLive TV series, moderator Matthew Kulke, MD, Director of the Program in Neuroendocrine and Carcinoid Tumors at Dana-Farber/Brigham and Women’s Cancer Center in Massachusetts and Associate Professor of Medicine at Harvard Medical School, leads a panel discussion on the treatment of pancreatic neuroendocrine tumors, with a focus on the effective sequencing of treatment options. The panel of experts consists of:

  • Jonathan R. Strosberg, MD, Associate Member, Department of GI Oncology, GI Oncology Research Section Head, Neuroendocrine Oncology, Moffitt Cancer Center, Florida

OncLive TV Series on Pancreatic Neuroendocrine Tumors

Often confused with the more aggressive form of pancreatic cancer called adenocarcinoma, pancreatic neuroendocrine tumors account for less than 5% of all pancreatic tumors. They are either functional, causing overproduction of hormones, or nonfunctional, producing no hormones. Symptoms vary depending upon the type of neuroendocrine tumor.

The late Steve Jobs, co-founder, chairman and CEO of Apple, was diagnosed with a pancreatic neuroendocrine tumor in 2003, underwent a liver transplant in 2009, and passed away on October 5, 2011. Bringing about greater awareness of pancreatic neuroendocrine tumors is critical for patients to be properly diagnosed, treated, and followed.

Episode 1: Pancreatic Neuroendocrine Tumor Diagnosis Challenges

What are the treatment advances and unmet challenges for patients with pancreatic neuroendocrine tumors? By the time pNET patients are properly diagnosed, about 60% to 80% already have metastatic disease. Dr. Pommier notes that these tumors frequently spread to the liver.

The four classic pNETs, says Dr. Pommier, are gastrinomas, insulinomas, VIPomas, and glucagonomas.

In order to properly diagnose these rare tumors, physicians can begin with several imaging methods including CT scans and MRI. According to Dr. Strosberg, beyond those modalities, octreoscans and EUS (endoscopic ultrasound) can also be used, with EUS detecting tumors as small as half a centimeter in size.

Dr. Reidy also uses CT and MRI scans for identifying pancreatic neuroendocrine tumors and says physicians can find out a lot by talking to patients about their symptoms.
Read more about pancreatic neuroendocrine tumors in The North American Neuroendocrine Tumor Society (NANETS) consensus guideline article, Well-Differentiated Tumors of the Stomach and Pancreas. Click here

Episode 2: Pathologic Classification of Neuroendocrine Tumors

“There is an increasingly important way that we classify neuroendocrine tumors,” says Dr. Kulke, “and that is by grade.” Dr. Pommier stresses that pathology reports must indicate the grade of a tumor as this is critical information regarding a patient’s prognosis. The grade of a tumor can be determined using mitotic counts and the Ki-67 proliferation rate. For more information about nomenclature, grading and staging of neuroendocrine tumors see the NANETS consensus guidelines, click here.

Neuroendocrine tumors are divided into well-differentiated and poorly-differentiated tumors. Within well-differentiated tumors there are low, medium and high-grade tumors. Traditionally, a mitotic count of less than 10 has been considered low grade, between 10 and 20 is considered high grade, and greater than 20 is a high-grade tumor.

The Ki-67 proliferation marker determines how quickly cells are increasing. Dr. Reidy notes that pathologists examine cellular differentiation in addition to markers. She explains that for well-differentiated tumors a Ki-67 marker above 20% traditionally indicated a high-grade tumor. But recent data indicates that a Ki-67 of 55% or higher may now be used to determine high-grade tumors and this can help determine the best therapy for a patient.

Episode 3: Treatment of Neuroendocrine Tumor Liver Metastases

Liver-directed therapies for pancreatic neuroendocrine tumor patients include surgical debulking of the liver, chemoembolization, radioembolization, and ablation. Dr. Pommier notes that by debulking liver metastases it is possible to remove 90% of disease and get very good, long-term survival rates and results. Dr. Pommier says that surgery is the preferred course of treatment and other liver-directed therapies should be considered when patients with extensive disease cannot be treated by surgical debulking.

Episode 4: Alkylating Agents in Pancreatic Neuroendocrine Tumors

Is chemotherapy a good treatment option for pancreatic neuroendocrine tumors? Dr. Reidy-Lagunes believes this is a reasonable option, especially for patients who have metastases in more than 75% of their liver when embolization can be especially toxic.

According to Dr. Pommier there is still the need to further investigate whether systemic or targeted therapies are the best treatments for patients with pNETs. An ongoing clinical trial is studying the effectiveness of everolimus in patients with pNETs following the surgical resection of liver metastases.

Dr. Strosberg talks about data from phase II clinical studies of certain alkylating regimens for pNET patients. Recently the oral agent temozolomide has been seen as a promising new option. There are also studies with a combination of capecitabine and temozolomide, demonstrating 70% response rate with a median progression-free survival of 18 months.

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Novartis Offers New Sandostatin LAR Depot Co-Pay Assistance Program

A new co-pay assistance program for carcinoid syndrome patients taking Sandostatin® LAR Depot has been established by Novartis Pharmaceuticals Corporation, effective February 2014.

With the Sandostatin® LAR Depot Co-Pay Assistance Program, eligible patients with the severe diarrhea and flushing associated with carcinoid syndrome pay a $25.00 maximum co-pay for their Sandostatin® LAR Depot prescriptions.

Novartis Offers Sandostatin LAR Depot Co-Pay Assistance Program

Novartis Pharmaceuticals Corporation will pay the remainder of the co-pay for Sandostatin® LAR Depot

  • For commercial patients, up to $9,600 per calendar year
  • For cash patients, up to $800 per injection and $9600 per calendar year

You are eligible if you:

  • Are at least 18 years of age
  • Have been diagnosed with the severe diarrhea and flushing symptoms associated with carcinoid tumors (carcinoid syndrome)
  • Have been prescribed and receive an approved dose of Sandostatin® LAR Depot
  • Live in the United States or Puerto Rico
  • Have commercial insurance with medical and/or prescription benefits that cover Sandostatin® LAR Depot or are paying in full for your Sandostatin® LAR Depot
  • Are not on Medicare, Medicaid, or other coverage under any federal or state health care program

How to enroll:

Ask your health care provider or call Patient Assistance NOW Oncology (PANO) to learn about co-pay assistance. Call PANO at 1-800-282-7630.

Telephone_2Depending upon your particular type of insurance, you will either be directed to a website to print out a co-pay card or the patient specialist will work directly with your doctor’s office to help you pay for the co-pay associated with Sandostatin LAR Depot.

Download the Sandostatin® LAR Depot Patient Co-Pay Assistance Program Overview here

Download the Sandostatin® LAR Depot Co-Pay Assistance Program Application (all states & Puerto Rico, except for California) here

Download the Sandostatin® LAR Depot Co-Pay Assistance Program Application (California only) here

Visit the Sandostatin® LAR Depot Co-Pay Assistance Program website for patients/caregivers here

 

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First Meeting of New Southern Carcinoid and NET Support Group in Tennessee

All interested members of the carcinoid/neuroendocrine tumor community are invited to attend the first meeting of the newly formed Southern Carcinoid and NET Support Group, serving the community in Tennessee, Kentucky and Mississippi.

Dr. Eric H. Liu, Director of the Vanderbilt Neuroendocrine Center and Director of Surgical Services, will be the guest speaker, talking about blood tests for carcinoid/NETs.

Dr. Eric H. Liu, Director of the Vanderbilt Neuroendocrine Center

The meeting will be held on Saturday, March 29 from 11:00 am to 1:00 pm, CST, at the Vanderbilt Ingram Cancer Center, Room 898 K in Nashville, Tennessee. Parking is in the South Garage.

For more information, contact support group leader Paula Hurt at 423-313-7355 or by email at hurtprs@aol.com.

First Meeting of Southern Carcinoid and NET Support Group

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BerriHealth Supports Carcinoid and Neuroendocrine Tumor Research

BerriHealth, a leader in providing high-quality black raspberry powder for clinical trials and directly to consumers online, has donated a portion of their 2013 sales to New Orleans Louisiana Neuroendocrine Tumor Specialists (NOLANETS), led by Dr. Eugene Woltering. The program is a collaborative effort between the Louisiana State University Health Sciences Center and the Ochsner Medical Center in Kenner Louisiana, and the money helps enable research for patients with neuroendocrine tumors (NETs). This is the third consecutive year that BerriHealth has made this donation.

BerriHealth Donates to NET Cancer Research
In 2014, BerriHealth is working to expand their support for cancer research. Customers can show support for neuroendocrine tumor research by using a promotion code, NETs, on the BerriHealth website, http://www.berrihealth.com. Any order placed with this code will have 5% of the purchase price donated to research focused on neuroendocrine tumors.

“Funding for research in neuroendocrine tumors is extremely difficult to obtain through traditional funding sources,” notes Dr. Woltering. With new research and increased medical awareness, there has been more focus on correctly diagnosing and treating NETs.

The black raspberry, grown mostly in Oregon, is prized for high levels of anthocyanins and polyphenols. Because of this special combination of phytonutrients in high concentrations, black raspberries have been studied in numerous clinical trials, and in NET cancer research done by the NOLANETS team.

For more information about BerriHealth, or supporting cancer research, please contact Steve Dunfield at (888) 761-8407.

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