Caring for Carcinoid Foundation

"... Based on the available data, the Neuroendocrine Tumor Task Force believes that VEGF inhibitors may represent an effective therapeutic strategy for neuroendocrine tumor patients. ..."

June 4, 2009: 15 Doctors Release a Statement via NANETS Regarding the Use of Angiogenesis Inhibitors in Patients with Neuroendocrine Tumors

The Caring for Carcinoid Foundation believes in providing the carcinoid/related NET community with the most current and up-to-date information available. Recently many patients have asked questions about angiogenesis inhibitors and their advisability for patients with neuroendocrine tumors.

First, the Caring for Carcinoid Foundation recommends always that any patient interested in new treatments consult their personal physician to determine whether the treatment is appropriate for him/her.

In addition, regarding the use of angiogenesis inhibitors in patients with neuroendocrine tumors, CFCF supports the general statement issued by fifteen doctors via the North American Neuroendocrine Tumor Society (NANETS). Please see the full statement below.

For more specific information on clinical trials, including what they are, which drugs are available, where to enroll and how to participate, please visit the Caring for Carcinoid Foundation's Clinical Trials Finder and Patient Resource

For any questions, please do not hesitate to contact the Caring for Carcinoid Foundation at 857-222-5492 or info@caringforcarcinoid.org

*****
NANETS Statement on the Investigation of Angiogenesis Inhibitors
in Patients with Neuroendocrine Tumors

The North American Neuroendocrine Tumor Society (NANETS) has become aware of concerns among neuroendocrine tumor patients regarding treatment with angiogenesis inhibitors. These concerns appear to be based in part on recent studies in animal models, which have raised questions about the potential for angiogenesis inhibitors to increase tumor metastases. NANETS notes that the clinical implications of these observations remain uncertain. Similar observations have not been made in humans. Moreover, extensive experience with angiogenesis inhibitors in other malignancies have shown that these agents have the ability to slow tumor growth and improve survival in patients with several different types of metastatic cancer.

Angiogenesis inhibitors include the drugs bevacizumab (Avastin), sunitinib (Sutent), sorafenib (Nexavar) and related agents. These drugs have been used in thousands of cancer patients. Treatment with bevacizumab is known to improve survival in patients with metastatic colorectal cancer and is approved by the FDA for this indication. Treatment with bevacizumab has been further shown to slow tumor progression in patients with advanced breast cancer. Treatment with sunitinib or sorafenib improves survival in patients with kidney cancer.

Early studies also suggest that angiogenesis inhibitors may have antitumor activity in neuroendocrine tumors. Based on these initial studies, several randomized studies are now being performed with angiogenesis inhibitors in neuroendocrine tumor patients to confirm their activity in this setting. NANETS strongly endorses these studies for patients with neuroendocrine tumors.

Signing Physicians:

Larry Kvols, MD
Chair, NANETS
Moffitt Cancer Center
Tampa, FL

William Maples, MD
Vice Chair, NANETS
Mayo Clinic
Jacksonville, FL

M. Sue O'Dorisio, MD, PhD
Treasurer, NANETS
University of Iowa
Iowa City, IA

Matthew Kulke, MD
Education Co-Coordinator, NANETS
Dana-Farber Cancer Institute
Boston, MA

Rodney Pommier, MD
Education Co-Coordinator, NANETS
NANETS Board of Directors
Oregon Health & Science University
Portland, OR

Steven Marx, MD
Research Co-Coordinator, NANETS
NANETS Board of Directors
NIH/National Institute of Diabetes
& Digestive & Kidney Disease
Bethesda, MD

James Yao, MD
Research Co-Coordinator, NANETS
MD Anderson Cancer Center
Houston, TX

Lowell Anthony, MD
NANETS Board of Directors
Louisiana State University
Health & Sciences Center
New Orleans, LA

Philip Boudreaux, MD
Louisiana State University
Health & Sciences Center
New Orleans, LA

Domenico Coppola, MD
Moffitt Cancer Center
Tampa, FL

Vay Liang W. Go, MD
NANETS Board of Directors
David Geffen School of Medicine - UCLA
Los Angeles, CA

Stanley Goldsmith, MD
NANETS Board of Directors
New York Presbyterian Hospital
Weill Cornell Medical Center
New York, NY

Aaron Vinik, MD, PhD
NANETS Board of Directors
Strelitz Diabetes Institute
Eastern Virginia Medical School
Norfolk, VA

Richard Warner, MD
NANETS Board of Directors
Mt. Sinai School of Medicine
New York, NY

Gregory Wiseman, MD
Mayo Clinic
Rochester, MN

2008

September 13, 2008: RAD001 Combined with Sandostatin LAR (R) Depot and as Monotherapy Controls Growth of Rare Pancreatic Tumors

Marketwatch News & Commentary reports

"82% of patients with pancreatic neuroendocrine tumors (NET) experienced clinical benefit when treated with daily RAD001 and monthly Sandostatin LAR Depot - 77% of patients with pancreatic NET experienced clinical benefit when treated with daily RAD001 - Data show RAD001, an oral mTOR inhibitor, has potential to become new treatment for patients with pancreatic NET who currently have limited options - Phase III trials underway to confirm impact of combination RAD001 and Sandostatin LAR Depot therapy on survival in pancreatic NET and carcinoid patients."

For additional information, please visit:
http://www.marketwatch.com/news/story/rad001-combined-sandostatin-larr-depot/story.aspx?guid={FD992014-E7EC-426F-849E-40D4B1C4F207}&dist=hppr

May 5, 2008: Molecular Insight Pharmaceuticals Partners with CFCF to Improve the Lives of Carcinoid Patients

The Caring for Carcinoid Foundation (CFCF) is pleased to announce a partnership with Molecular Insight Pharmaceuticals Inc. in which both organizations will work together to improve the lives of carcinoid patients.

Molecular Insight Pharmaceuticals Inc. (MIP) is a biopharmaceutical company specializing in the emerging field of molecular medicine, applying innovations in the identification and targeting of disease at the molecular level to improve patient healthcare by addressing significant unmet medical needs. Molecular Insight Pharmaceuticals is committed to improving healthcare for patients with life-threatening diseases.

"The Caring for Carcinoid Foundation is grateful to MIP for their commitment to improving the lives of carcinoid patients as well as their commitment to advancing the field of carcinoid and related neuroendocrine tumor research," said Nancy O'Hagan, President and Founder of the Caring for Carcinoid Foundation.

"As a metastatic carcinoid patient, I am thrilled to see a company like MIP that is committed not only to improving patient health but also to partnering with non-profits like the Caring for Carcinoid Foundation, which is dedicated to discovering a cure for carcinoid cancer and devoting 100% of all donations to carcinoid and related neuroendocrine tumor research."

MIP will help to sponsor one of CFCF's 2008 scientific research grants. Beyond this research partnership, MIP will sponsor CFCF's fundraisers to raise awareness of carcinoid and related neuroendocrine tumors, and help the carcinoid/related NET community raise much-needed funds for even more scientific research. MIP will also sponsor Team Caring for Carcinoid Foundation in the following events:

2008 Bank of America Chicago Marathon
2008 Chicago Distance Classic Half Marathon
2008 Boston Harbor Swim
2008 Pan Mass Challenge

Patients, family, and friends, please JOIN US!

For more information about participating in Team Caring for Carcinoid Foundation events--a fast, fun and easy way to raise money for carcinoid and related neuroendocrine tumor research--please visit:

Caring for Carcinoid Foundation Fundraising Events

About Molecular Insight Pharmaceuticals (MIP)

MIP is a leader in the development of radiotherapeutics and molecular imaging pharmaceuticals. MIP's proprietary Ultratrace technology allows creation of radiopharmaceuticals with enhanced delivery and reduced side-effect profiles. MIP currently has two therapies in clinical development for neuroendocrine tumors, Azedra and Onalta. Azedra is planned to be marketed for the treatment of metastatic neuroendocrine tumors such as pheochromocytoma, carcinoid and neuroblastoma that are not amenable to treatment with surgery or conventional chemotherapy. Azedra has received Orphan Drug status and a Fast Track designation by the FDA. Onalta is indicated for treatment of metastatic carcinoid and pancreatic neuroendocrine cancer in patients whose symptoms are not controlled by conventional somatostatin analog therapy. Onalta has been granted Orphan Drug status by the FDA. For more information about MIP, Azedra or Onalta please visit:

Molecular Insight Pharmaceuticals

Feb 2, 2008: Nancy O'Hagan Appointed to Neuroendocrine Task Force of NCI Gastrointestinal Steering Committee

Nancy O'Hagan, CFCF Founder and President, was appointed to the Neuroendocrine Task Force of the National Cancer Institute (NCI) Gastrointestinal Steering Committee.

The NCI Gastrointestinal Cancer Steering Committee's role is to harmonize an efficient, cost-effective, science-driven and transparent process that will identify and promote the �Best Science� in gastrointestinal cancer clinical research.

The NCI Gastrointestinal Cancer Steering Committee is designed to provide comprehensive analysis of proposed clinical trial concepts and facilitate the sharing of ideas among a broad range of clinical, basic and translational scientists, NCI staff, community oncologists and patient advocates in the development of those concepts.

Nancy is honored to serve on the Neuroendocrine Task Force.

The members of the Neuroendocrine Task Force are:

Lillian Siu, MD, Chair
James C. Yao, MD, Vice-Chair
Lowell B. Anthony, MD
Sylvia L. Asa, MD, PhD
Jackie Benedetti, PhD
Adam C. Berger, MD
Lou Fehrenbacher, MD
Mort Kahlenberg, MD
Walter Kocha, MD
Eric Nakakura, MD, PhD
Donna Niedzwiecki, PhD
Jeffrey A. Norton, MD
Nancy O�Hagan
Nick Petrelli, MD
James F. Pingpank Jr., MD
Howard P. Safran, MD
Virginia W. Steele

Feb 1, 2008: CFCF Launches Insider Pages Online Fundraiser

Members and Supporters of Caring for Carcinoid Foundation have Three Weeks to Raise Money by Writing Local Business Reviews on InsiderPages.com

Insider Pages and Caring for Carcinoid Foundation today launched an online fundraiser, allowing Caring for Carcinoid Foundation to raise money. Throughout the fundraising period, from 02/01/08 - 02/25/08, members and supporters are encouraged to the visit http://www.insiderpages.com/fundraisers/CFCF and write reviews on local businesses recently visited. For every qualifying review, Insider Pages will make a donation to Caring for Carcinoid Foundation.

"Caring for Carcinoid Foundation is excited to launch our online fundraiser with Insider Pages. Our goal is to raise $5,000," said Lance Miller. "This program allows us to reach out to friends, family and co-workers without selling anything or asking for donations."

Insider Pages Fundraising is an easy and fun way to get involved with your community. Once registered at
http://www.insiderpages.com/fundraisers/CFCF, fundraiser participants can conveniently write reviews on their favorite local business from work or home, day or night, throughout the fundraising period.

Not only does this program simplify fundraising, Insider Pages receives valuable user reviews, and the community gains a rich source of customer referrals and tips on local businesses that remains online for years to come.

For additional information and guidelines about Insider Pages Fundraising Program, please visit:
http://www.insiderpages.com/fundraiser/terms

Jan 31, 2008: Novartis Launches New Clinical Trial for Metastatic Carcinoid Patients

Study Title

"A study of pasireotide LAR vs. octreotide LAR in patients with metastatic carcinoid tumors whose disease-related symptoms are inadequately controlled by somatostatin type drugs"

Purpose

"This clinical trial will evaluate the effectiveness and safety of the study drug pasireotide LAR vs. octreotide LAR in controlling the symptoms of diarrhea and flushing in patients with metastatic carcinoid tumors whose symptoms are inadequately controlled by maximum doses of somatostatin type drugs."

Learn about new clinical trial

2007

Sep 10, 2007: Novartis Launches "Carcinoid Link"

Novartis launched "Carcinoid Link", an online program for carcinoid patients, families, and friends. "Carcinoid Link" offers the following:

"Enroll in Carcinoid Link now and you'll receive an important article by Larry Kvols, M.D., designed to help you understand more about the condition.

Simply complete the questionnaire below, and the article will appear on your screen. During the course of your participation in the Carcinoid Link program, you'll receive a series of personalized communications, including E-mails and even webcasts�all offering you valuable information about carcinoid cancer."

Enroll in "Carcinoid Link"

Sep 1, 2007: FDA Offers $14M to Orphan Drug Research

The Food and Drug Administration (FDA) announced a new research grant program to support orphan drug research. This program is administered by the FDA's Office of Orphan Products Development (OPD):

"The goal of FDA's OPD grant program is to support the clinical development of products for use in rare diseases or conditions where no current therapy exists or where the product will improve the existing therapy.

Grants will be awarded up to $200,000 or up to $400,000 in total (direct plus indirect) costs per year for up to 4 years.

For FY 2009, the application receipt date is February 6, 2008, and for FY 2010, the application receipt date is February 4, 2009."

Learn about FDA OPD grant program

Jan 21, 2007: Two Additional Sources of Funding for Carcinoid / NET Research Available - Apply Now!

In addition to Caring for Carcinoid Foundation (CFCF) research grants, two additional sources of funding for carcinoid / NET research are available. The deadlines are fast approaching, so apply now!

Cancer Treatment Research Foundation

Mission

"Cancer Treatment Research Foundation (CTRF) is dedicated to curing cancer through funding patient-centered clinical studies that deliver innovative treatment options to cancer patients."

Funding Focus

"CTRF provides cancer research funding for conventional, integrative and complementary phase I and phase II cancer research trials to researchers from around the world.

Our researchers are from world renowned institutions like MD Anderson, Sloan-Kettering, Dana Farber and Mayo Clinic."

Research Grants

"Awards range between $25,000 and $300,000 / year including indirect costs. The maximum period of funding is for two years. ...

Since 1991, CTRF has funded or is funding 67 grants totaling over $15 million dollars. Click here for a complete listing of cancer research grants."

2007 Application

2007 deadlines for Preliminary Grant Application Submission:

February 19, 2007

June 15, 2007

August 27, 2007

2007 Application

Website

FDA Office of Orphan Products Development Grant Program

Goal

"The goal of the FDA Office of Orphan Products Development Grant Program is to encourage clinical development of products for use in rare diseases or conditions. The products studied can be drugs, biologics, medical devices, or medical foods."

What Studies Qualify

"At this time, only clinical studies qualify for consideration. Each application should propose one discrete clinical study to facilitate FDA approval of the product for a rare disease or condition. The study may address an unapproved new product or an unapproved new use for a product already on the market. All studies must be conducted under an Investigational New Drug (IND) application or an Investigational Device Exemption (IDE). Medical foods are the only exception to this requirement.

Click here for a list of products that have been approved as a result of OOPD funded grants."

Research Grants

"Clinical trials are awarded grants from $200,000 (Phase 1) to $350,000 (Phase 2 and 3) per year in total costs for up to 3 years."

2007 Application

2007 deadline for application: February 7, 2007

2007 Application

2007 Application Helpful Hints

Website

2006

Oct 18, 2006: Callisto Pharmaceuticals Opens First Site for Phase II Clinical Trial of Atiprimod in Advanced Carcinoid Cancer Patients

According to the Callisto Pharmaceuticals press release:

"Callisto Pharmaceuticals, Inc., a developer of new drug treatments in the fight against cancer and other major health threats, announced today the official opening of its first clinical site for its Phase II clinical trial of Atiprimod to treat low to intermediate grade neuroendrocrine carcinoma (advanced carcinoid cancer). The site, Hematology Oncology Services of Arkansas in Little Rock Arkansas, which is headed by Principle Investigator Dr. Brad Baltz, specializes in the treatment of solid tumors, and is presently screening patients for entry into the trial. Further details of this trial can be found at www.clinicaltrials.gov. Several other major cancer centers are currently in the process of reviewing the trial protocol and the Company anticipates that they will open in the near future."

(continued)

Read Callisto Pharmaceuticals press release

Read Clinicaltrials.gov profile

Jun 19, 2006: mTOR Inhibition - A Novel Mechanism for Cancer Treatments

Novartis Oncology will host a free, live webcast on Monday, June 19, 2006, from 1:00pm to 2:30pm EST. The topic is "mTOR Inhibition: A Novel Mechanism for Cancer Treatments." Dr. Matthew Kulke, member of our Board of Scientific Advisors, is a featured speaker.

According to Novartis Oncology, this webcast will provide a unique interactive opportunity to learn about:

mTOR inhibition as a new mechanism for cancer treatments
Treatment innovations for neuroendocrine cancers
Update on the RADIANT-1 clinical trial

Jun 6, 2006: Atiprimod Named One of "Ten Leading Cancer Projects" by Windhover's Therapeutic Alliances

On June 6, Atiprimod was selected as one of the "Ten Leading Cancer Projects" by Windhover's Therapeutic Alliances. Callisto Pharmaceuticals is the developer of Atiprimod. According to the announcement:

"Callisto recently announced that data from a Phase I clinical trial of Atiprimod in advanced cancer patients revealed significant tumor regression in several patients with advanced carcinoid cancer, as well as important reductions in other debilitating symptoms.

The interim clinical results further support Callisto's announced plans to launch a Phase I/IIa clinical trial in advanced carcinoid patients."

Read Atiprimod announcement

Jun 2, 2006: Callisto Announces Additional Atiprimod Data from Phase I Clinical Trial in Advanced Cancer Patients

Callisto Pharmaceuticals released additional Phase I data from its clinical trial of Atiprimod. The clinical trial comprised advanced solid tumor patients of varying types. Of those patients, five had advanced carcinoid cancer and were treated with drug at 60 mg tablets (N=1), 90 mg capsules (N=1) and 120 mg capsules (N=3). Four of these advanced carcinoid patients have completed their treatment on Atiprimod.

During treatment, three of the four advanced carcinoid patients had measurable tumor regressions and loss of many of the debilitating symptoms of this disease. Importantly, one patient remained on drug through 7 cycles (seven months), exhibiting significant tumor regression. Reducing the debilitating symptoms so the patient can continue normal daily activities is an important aspect of treating this cancer.

Dr. Arthur Sytkowski, Consulting CMO and Medical Monitor of Callisto Pharmaceuticals, stated:

"We are pleased with the results we have seen so far in this trial. The tumor regression and reduction in symptoms seen in the carcinoid patients is very encouraging and indicates that a Phase I/IIa trial of Atiprimod specifically to treat advanced carcinoid patients is clearly warranted."

Review Phase I data

Jun 1, 2006: National Cancer Institute Launches Phase II Trial for Neuroendocrine Patients

The National Cancer Institute is enrolling patients with neuroendocrine tumors metastatic to the liver in a Phase II trial. According to the National Cancer Institute:

"The purpose of this trial is to examine the utility of high-dose, intra-arterial melphalan delivered through the hepatic artery via a percutaneous (PHP) approach utilizing the Delcath� catheter system.

The rationale for examining this therapy for patients with metastatic neuroendocrine tumors includes a previously reported overall response rate of 6 of 12 patients treated with high-dose melphalan via a surgical approach (Surgery 2005;138:1003-8). A small cohort (n=4) of patients treated as part of our Phase I dose-escalation PHP trial with the Delcath system had metastatic neuroendocrine tumors, with 2 observed complete responses of 24 months duration (J Clin Oncol 2005;23:3465-3474). Early results in the present phase II study, support previous observations."

Read NCI patient recruitment letter

View results of NCI Phase I trial

May 30, 2006: After Gleevec, Targeted Drugs Acquire More Targets

On May 30, the National Cancer Institute (NCI) published an article in Spotlight, its cancer bulletin, entitled, "After Gleevec, Targeted Drugs Acquire More Targets". This article describes the next generation of targeted therapies for cancer patients, such as "multi-targeted" drugs that interact with a small number of proteins rather than just one.

Dr. George Demetri, member of our Board of Scientific Advisors, is profiled in this article for his work on targeted therapies, including the FDA-approved Sutent for gastrointestinal stromal tumors. Dr. Demetri states:

"We're now going around a corner again toward more broadly targeted agents that hit multiple genetic pathways. The good news is that the more broadly targeted drugs may be applicable to different cancers, as we've seen with sunitinib [Sutent]."

Read the NCI article

May 17, 2006: Neotropix Receives FDA Approval to Begin Clinical Trials with First Investigational Cancer Drug

Neotropix launched a Phase I clinical trial of Seneca Valley Virus for patients with advanced neuroendocrine cancers. The clinical trial is designed to determine if Seneca Valley Virus can be systemically administered safely to patients.

Dr. Paul Hallenbeck, President, Chief Scientific Officer and founder of Neotropix, stated:

"Seneca Valley Virus has the potential to be safer and more effective than treatments currently available or even on the horizon, and may help treat some of the most commonly diagnosed cancers among American men and women."

Learn about new Phase I clinical trial of Seneca Valley Virus

May 15, 2006: EntreMed Initiates Combination Phase 2 Clinical Trial with Panzem NCD in Carcinoid Cancer

EntreMed launched a Phase II clinical trial of Panzem NCD with Avastin for patients with locally advanced or metastatic carcinoid tumors. The clinical trial is designed to evaluate the safety and efficacy of this novel combination therapy. Dr. Matthew Kulke, a member of our Board of Scientific Advisors, will direct this clinical trial as the Principal Investigator. The study sites include Dana-Farber Cancer Institute, Massachusetts General Hospital, and Beth Israel Deaconess Medical Center.

Carolyn F. Sidor, M.D., M.B.A., EntreMed's Vice President and Chief Medical Officer, stated:

"Patients with metastatic carcinoid tumors have very few effective treatment options. Combination chemotherapy, when used, generally results in a response rate of 10-15%. We believe that combining two agents with antiangiogenic activity represents a unique approach to treatment, and may produce higher response rates than combination chemotherapy or either antiangiogenic agent alone. Novel, effective therapies are needed to improve the outcomes for these patients."

Learn about new Phase II clinical trial of Panzem NCD with Avastin

Apr 6, 2006: Dr. Kjell Oberg Delivers the 2006 Brennan-Sackler Lecture

Dr. Kjell Oberg, Dean of the Medical Faculty of Uppsala University, Sweden, delivered the 2006 Brennan-Sackler Lecture on April 6 at Memorial Sloan-Kettering Cancer Center.

In his lecture, Dr. Oberg presented an update on carcinoid tumor biology, diagnosis, and therapy. Dr. Oberg stated that carcinoid "tumor biology and molecular genetics play a major role" in the future of carcinoid therapy.

View Dr. Oberg's presentation



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Click HERE to read "Living Well with Carcinoid", a nutritional guide by Jodi Newson, MS, RD, CSO.

Click HERE to read the CURE review of CFCF Board Member Carrie Host's cancer memoir, "Between Me and the River".

Click HERE to read Carrie Host's short essay on healing, titled "The Light Side of Darkness".

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