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Lauren and Nick.

Dave, Suzi, and Lauren at 2011 Focus on Neuroendocrine Tumors Conference in Philadelphia, PA

Dave, Suzi, Lauren - Philadelphia, PA

Third Annual Los Angeles Neuroendocrine Tumor Patient Education Event

Last weekend was CFCF's third annual Los Angeles Neuroendocrine Tumor Patient Education Event, sponsored by the Oschin Cancer Center at Cedars Sinai and Amgen. This year's event was focused on helping neuroendocrine tumor patients evaluate clinical trials.  Also new this year was a patient panel to harness the knowledge that patients possess and give neuroendocrine cancer patients the opportunity to share their experiences with clinical trials.

The highlight of the day was the patient panel with Jan, Candy, Phil, and Hana.  In this inspirational panel, each patient shared their experiences with neuroendocrine cancer clinical trials, including: 

  • Why they chose to enter a trial
  • What their top concerns were before entering a trial
  • What their experiences with each trial were
  • What questions they would ask before entering another clinical trial.

One of the patients that spoke is the fifth patient for the Lutetium-177 clinical trial in Houston, TX (177Lutetium-DOTA-Octreotate Therapy in Somatostatin Receptor-Expressing Neuroendocrine Neoplasms) and many audience members found it fascinating to learn of her experience in this clinical trial of peptide receptor radiotherapy (PRRT).  To learn more about PRRT, please see these videos on CFCF's YouTube page. Common themes that emerged were the importance of discussing all options with physicians and reporting all side effects immediately.  The patients shared stories of dose reduction and exiting trials due to side effects.  The patients also discussed their hope that others might benefit from their participation in the clinical trials. 

The patient panel's success reminds us of how individual stories can influence and inspire others.  Please consider sharing your experiences as a patient in a Survivor Story today.  

In addition to the patient panel, the event featured a distinguished group of physicians from Southern California. The event began with a discussion by Dr. Wolin from Cedars-Sinai on some of the basics for patients with carcinoid and pancreatic neuroendocrine tumors.  Dr. Wolin discussed diagnosis, monitoring, surgery, liver-directed therapies and somatostatin analogs. Video from Dr. Wolin's presentation will be available on the Caring for Carcinoid Foundation's website.  E-mail Frances to receive an update when the video is available.

Next, Dr. Natale from Cedars-Sinai discussed, “Cancer Clinical Trials.”  His presentation can be found here.  Dr. Natale reviewed phase 1, 2, and 3 clinical trials in patients and the years of pre clinical work that need to happen before drugs can go into human trials.  This pre clinical work identifies the pathway to target and then tests compounds in cell lines and other model systems. Dr. Natale reminded patients that enrolling in clinical trials is one option for patients to take control over their own health care, potentially helping themselves and others by contributing to medical research.

Next, Dr. Hecht from UCLA discussed “The Biology of Neuroendocrine Tumors and Lessons from other GI Cancers.”  Dr. Hecht’s presentation can be found here.  Dr. Hecht discussed chemotherapy and targeted therapies – specifically therapies to block angiogenesis (the growth of new blood vessels), growth factor receptors (substances the regulate cell growth and differentiation) and the mTOR signaling pathway (a pathway that is disregulated in many cancers including neuroendocrine cancers).  These pathways (angiogenesis, growth factor, and mTOR)  are common to many cancers including neuroendocrine cancers.  Because these pathways are shared patients with many different cancers may benefit from research into these pathways.

In the final doctor presentation, Dr. Wolin discussed current clinical trials for neuroendocrine cancer patients including peptide receptor radiotherapy and the current trial of Lutetium-177 in Houston, TX.  Please see below for full details from

177Lutetium-DOTA-Octreotate Therapy in Somatostatin Receptor-Expressing Neuroendocrine Neoplasms

The day was filmed thanks to the generosity of Giovanna Imbesi of Generate Possibility and all videos will be available on CFCF’s website.  Stay tuned to CFCF’s E-Updates so that you can view these videos as soon as they are available.  For more details on all of CFCF's educational events please visit CFCF's Conference Materials website.

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