CFCF       

2012 E-Update Number 2

Donate
In this Issue
Calling All Cyclists - Join Team CFCF
Celebrate Rare Disease Day 2012
Spreading Awareness of NETs on Radio
NET Researchers Share Findings
NVS logo
CFCF is pleased to announce that this E-Update is supported by Novartis Pharmaceuticals Corporation
Follow us on Twitter!

 

Like us on Facebook!

 

Visit us on YouTube! 

 

Candye Kane  
 Candye Kane
(submitted 1/24/12)
  
CFCF is honored to present Survivor Stories. They reflect remarkable courage and determination. Thank you to our Survivors for sharing their courage and words of hope with other patients.

Read our newest survivor stories:
Pamela Ter Gast, Ivan Starr
 Joy Hasty, Kathy
Give hope and a future to  neuroendocrine tumor patients: donate to CFCF where 100% of all individual donations go to carcinoid and related neuroendocrine tumor research.

CFCF is a 501(c)(3) organization-all contributions are tax-deductible.  We want our donors to know that we are allocating their donations responsibly and wisely to achieve a carcinoid cure as quickly as possible. 


To learn more, view CFCF's:
Audited Financial Statements
IRS Form 990

Caring for Carcinoid Foundation
198 Tremont Street, Box 456
Boston, MA 02116
617.948.2514
www.caringforcarcinoid.org
BBB Accredited Charity
CFCF meets all 20 Wise Giving Alliance standards for charity accountability established by the Better Business Bureau. Click here to check out the CFCF Wise Giving Report.
Sandostatin
Calling All Cyclists - Come Join Team CFCF!

2011 Team MembersTeam CFCF is recruiting enthusiastic men and women for the 2012 Pan-Mass Challenge. The PMC is an incredible weekend (August 4-5) of biking across the state of Massachusetts and meeting amazing people. Team CFCF is a big, friendly group with riders ranging from novice to highly experienced, and everything in between.

Don't miss out on this opportunity to challenge yourself, make friends, and raise money for neuroendocrine cancer research at Dana Farber Cancer Institute. Email Ellen for information.

Celebrate Rare Disease Day in Cambridge, MA

Rare Disease DayFebruary 29 will mark the 5th annual Rare Disease Day. Rare Disease Day aims to strengthen and unite the voices of patients with rare diseases and bring hope to our community. 

 

In honor of this year's celebration, CFCF is proud to partner with the Whitehead Institute at MIT. Join us on February 29 for discussions about advances in research and advocacy for neuroendocrine cancers and other rare diseases. Register today! 

 

Check the Rare Disease Day Website for events and other ways to get involved with the 2012 festivities. 

Spreading Awareness of NETs on CBS Radio

Radio On January 9, CFCF's Lauren Erb and neuroendocrine cancer patient Pam Ter Gast spoke on behalf of the neuroendocrine community on the Jordan Rich Show on Boston's WBZ Radio.

 

Lauren and Pam discussed the differences between pancreatic cancer and pancreatic neuroendocrine cancer. Pam shared her difficulty obtaining an initial diagnosis, and shared her reasons to be hopeful about the future: Promising research, caring support groups, clinical trials, and resources from CFCF. Pam's positive attitude stems from the support she receives from her friends and family. "I focus on living," she said. 

 

Listen to the interview here.

NET Researchers Share Findings at Symposium

ASCO

The American Society of Cancer Oncologists (ASCO) held its annual Gastrointestinal Cancers Symposium on January 19-21 in San Francisco. At the 3-day event, hundreds of posters were presented reporting the latest in gastrointestinal cancer research, including over 30 abstracts regarding gastrointestinal neuroendocrine tumors in particular.

 

Among the highlights, the National Comprehensive Cancer Network (NCCN) reported on development of a comprehensive database to characterize patients treated with neuroendocrine tumors at seven institutions. The database will serve as a resource for researchers to explore patient treatment patterns and clinical outcomes.  For more information, see the abstract here.

 

Another abstract described the interim analysis of a phase II clinical trial analyzing the combined effectiveness of two growth factor pathway inhibitors. Patients with well or moderately differentiated pancreatic neuroendocrine tumors were treated with a combination of mammalian target of rapamycin (mTOR) inhibitor temsirolimus and vascular endothelial growth factor (VEGF) inhibitor bevacizumab. Researchers concluded that in the preliminary analysis the combination therapy yielded greater tumor response rates than use of either agent on its own. Further analysis is ongoing.  For more information see the abstract here.

 

In 2011, everolimus, an mTOR pathway inhibitor, and sunitinib, a VEGF pathway inhibitor, were each approved as individual therapies by the US FDA for select patients with neuroendocrine tumors.  The study presented at ASCO provides insight into the effectiveness of targeting both pathways simultaneously.

 

Anyone considering these or any other potential treatments should consult with a physician well-versed in treating neuroendocrine tumor patients. Please consult CFCF's Doctor Database or call 617.948.2514 for help finding an experienced clinician.

 

Learn more about ASCO's GI Cancers Symposium here.