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2009 E-Update Number 6

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In this Issue
Nancy Writes New Blog
Breaking News for Patients
Springtime Success!
Join Us for a Cure!
Survivor Stories
Alicia Eagan
Alicia Eagan
Submitted  2/2009

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:
Join Us for a Cure
seatle to portland 08

Make a difference and get involved with CFCF!  Unite, meet fellow members of the carcinoid community, and spread awareness at upcoming CFCF events!

Jimmy Fund Walk
Chicago Marathon
Marine Corps Marathon
Quick Links...
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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. 

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

Caring for Carcinoid Foundation
198 Tremont Street, Box 456
Boston, MA 02116
857-222-5492
www.caringforcarcinoid.org
Nancy Lindholm O'Hagan Writes New Blog 
Nancy Lindholm O'HaganClick here to read CFCF Founder, Nancy Lindholm O'Hagan's latest blog on Clinical Trials, Government Advocacy and CFCF's upcoming Boston Awareness Weekend.

Save the date!  CFCF will be hosting its second patient event this September 12th and 13th in Boston, MA.  Stay tuned to future E-Updates for more information on this and other CFCF events.
Breaking News for Carcinoid and NET Patients
medical symbol photoOctreotide LAR Shown to Have Antiproliferative Effect in Patients with Metastatic NETs of the Midgut: The results of the first randomized, double-blind, placebo-controlled, multicenter, phase lllb study of octreotide LAR in patients with metastatic NETs of the midgut (PROMID study) was presented at the American Society of Clinical Oncology (ASCO) meeting in Florida.

Results from the PROMID study show that ocreotide LAR lengthens the median time to tumor progression compared with placebo in patients with metastatic NETs of the midgut.  To read the Abstract presented at ASCO please click here

NCCN Issues New Clinical Practice Guidelines for NETS: The National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology for NETs have been updated to include octreotide therapy as a new management option for asymptomatic patients with recurrent, unresectable carcinoid tumors as a Category 2A recommendation. This addition is based on recently published interim results of the PROMID study.

The updated Neuroendocrine Tumor Guidelines also include recommendations for management of neuroendocrine tumors of unknown primary cancers and surgical principles for management of neuroendocrine tumors.

To view the complete updated version of the NCCN Neuroendocrine Tumor Guidelines please click here and scroll down to follow the instructions for how patients can access the Guidelines.

Angiogenesis Inhibitors in Patients with Neuroendocrine Tumors: 15 doctors issued a statement via the North American Neuroendocrine Tumor Society (NANETS) regarding the use of angiogenesis inhibitors in patients with NETS, "The NANETS has become aware of concerns among neuroendocrine tumor patients regarding treatment with angiogenesis inhibitors..."   For the full statement please click here.

The Caring for Carcinoid Foundation encourages patients to discuss these announcements with their personal physician to determine whether the treatment is appropriate for him/her.  Please contact the Caring for Carcinoid Foundation at [email protected] with any questions or for help finding a physician well-versed in treating patients with NETs.
Springtime Success!
The results are in! This spring Team CFCF members raised nearly $20,000 in the Country Music Marathon and the Breezy Point Triathlon. We are grateful for the generosity and hard work of all participants; both events were successful in raising awareness and funds for carcinoid research!

Country Music Marathon: April 25, 2009 (Nashville, TN).

country music marathon
Thank you and congratulations to the CFCF team members who completed the Marathon and Half-Marathon courses! Your contributions helped CFCF raise $6,800! For official finishing times click here.


Breezy Point Triathlon: May 31, 2009 (Norfolk, VA)
A big thank you to all the CFCF triathletes who joined up with the Blackwood family to participate in this event! Your contributions helped CFCF raise over $11,300! For official finishing times click here.

Join Us for a Cure!
The following events are currently recruiting.  If you or someone you know would like to join Team CFCF in one of the following events, please contact [email protected].

Swim Across America Boston Harbor Swim: July 17, 2009 (Boston, MA)
 
Lauren Erb, CFCF's Executive Director, is back for a second year in a 22-mile relay swim across the Boston Harbor.  Join Lauren's relay to cover 22 miles and raise funds for NET research. There is also an opportunity to do a 1/2 mile swim along the Nantasket beachfront. Please e-mail Lauren if you are interested in learning more.

Jimmy Fund Walk: September 13, 2009 (Boston, MA)

Since its inception, the Jimmy Fund Walk has raised over $40 million for cancer research. You may choose from many different distances for a relaxing, fun day of walking along the historic Boston Marathon Course. All proceeds will be used to fund a large-scale genome study of carcinoid tumors led by Dr. Matthew Meyerson, M.D., Ph.D., Director of the Center for Cancer Genome Discovery at the Dana Farber Cancer Institute.

Marine Corps Marathon: October 25, 2009 (Washington, D.C.)

Join Team CFCF in "The People's Marathon" as we run for research.  This scenic course is also known as "The Marathon of the Monuments," and runs through the nation's capital.

To support Team CFCF and contribute to carcinoid and related NET research please click here!