The Foundation Dedicated to Discovering a Cure for Neuroendocrine Cancer

Caring for Carcinoid Foundation

Clinical Trials--from Confusion to Clarity

Happy July 4th!

3 issues are on my mind today:

1. Clinical Trials—
Many patients recently have expressed concerns about clinical trials, specifically those involving VEGF inhibitors. Many concerns are as a result of unsupported statements made from various sources.

Let's discuss facts:
A. Your personal clinician, familiar with your medical condition, is the only one to advise you on whether a clinical trial is right for you.
To obtain the facts about a clinical trial, speak with either your personal clinician or the lead clinician of the clinical trial.
Pursue your medical treatment thoughtfully and with your oncologist.

B. There is no right or wrong answer as to whether you should participate in a clinical trial. What is certain is that you should ignore unscientific, unsubstantiated information about clinical trials.

C. Clinical trials provide needed treatments to patients with cancers such as ours: cancers with no cure.
Specifically, researchers have shown that VEGF inhibitors help patients with NETs as well as patients with other types of cancers.
Are you still strongly opposed to clinical trials despite their proven benefit? Do you want to avoid clinical trials? Then, set yourself to helping find a cure via scientific research.

D. Clinical trials are rigorously monitored and reviewed by the NIH, NCI, scientists and clinicians through a multi-pronged process.
For a complete understanding of the process, please visit the NIH link below:

E. If you have more questions, call the Caring for Carcinoid Foundation and ask to speak with the Director of Patient Support about clinical trials, obtaining more information and the CFCF Clinical Trial Finder. 857-222-5492

2. Research!America

  • CFCF was R!A’s first non-profit member dedicated to carcinoid/related NETs.
  • CFCF supports R!A’s exhortation to TAKE ACTION and contact your Congressional Reps to increase federal funding of NETs. The U.S. government is the largest funder of scientific research in the world.
  • Inform your congressional representatives that:

(i) these cancers receive microscopic federal funding;
(ii) the incidence of neuroendocrine tumors is rising more rapidly than other malignant neoplasms [Yao et al, J Clin Oncol. 2008; 26(18): 3063-72 ]; and
(iii) the prevalence of neuroendocrine tumors is higher than more commonly known cancers such as pancreatic cancer and stomach cancer. [Yao et al, J Clin Oncol. 2008; 26(18): 3063-72].

  • For more information, please see the Research!America link below.

3. Join CFCF at the Second FREE Patient Conference in Boston in September 2009.

Where: Boston

When: Sept 12-13, 2009

Why: CFCF is committed to providing patient support and information for FREE.

  • CFCF does NOT charge patients money for providing information critical to your health. This is a critical part of CFCF’s vision.
  • CFCF held its first conference in Los Angeles in March--a terrific weekend with great patient turnout. CFCF wants to provide the same opportunity to those on the East Coast.

How can CFCF do this?

  • CFCF requires free participation by doctors—we only invite those doctors and scientists who are generous enough to participate without charging lecture fees. The most eminent scientists and clinicians participate in the conferences and provide a short lecture followed by a question and answer format. These are scientists and clinicians who are truly dedicated to patients and their well-being.
  • CFCF also asks businesses to donate food and other items to cover costs.

Join CFCF to learn on Saturday Sept 12, celebrate/unite at a party at the House of Blues’ private room on the evening of Saturday Sept 12, and walk on September 13th to raise awareness and raise funds for scientific awareness.

  • Our mission is to discover a cure for carcinoid cancer.
  • Our vision is to eliminate the suffering of carcinoid/NET patients, their families and caregivers.
  • To achieve our mission and vision, 100% of your individual donations go to scientific research into carcinoid and related NETs, including pancreatic endocrine tumors.

Join CFCF--Celebrate the joy of survival and work to find a cure.

Veritas et triumphus

**NB: I cannot respond to specific medical questions left here in the Comments section. Please call 617.948.2514 for assistance.