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:
http://www.cancer.gov/clinicaltrials/learning

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
http://www.caringforcarcinoid.org/clinical_trials/caring.asp

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.

http://www.researchamerica.org/

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 857-222-5492 for assistance.

Research and Awareness and YOU!

1 Research:
CFCF is committed to scientific research of carcinoid cancer and related neuroendocrine tumors. To date, CFCF has committed $4.5 million to exciting research projects including:

• A national bioconsortium uniting Stanford (CA), M.D. Anderson (TX), Memorial Sloan Kettering (NYC), MGH (Boston, MA), & Dana-Farber Cancer Institute (Boston, MA); and
• A large-scale genome project of carcinoid tumors; and
• A 2009 joint CFCF-American-Gastroenterological Association grant aimed at attracting young investigators to the carcinoid/NET field.
  

2 Awareness:
CFCF's research plan increases awareness and interest among talented investigators. We are dedicated not only to funding the luminaries of the carcinoid/NET research/clinical world, but also to attracting young investigators who will continue to make progress and add novel ideas.
CFCF also increases awareness in innumerable ways. One of my favorites is CFCF Teams, which participate in athletic events. Patients, friends and family ask people to participate who have never heard of carcinoid/NET before. As CFCF Team Members fund raise, they educate many of their unaware friends/colleagues/neighbors about these terrible NET diseases.

3 YOU!
I'm delighted by the extraordinary group of scientists and carcinoid attendees who will attend the Caring for Carcinoid Foundation's Patient Education and Awareness Conference on March 29th in Los Angeles, California.

It will be FREE!!!! CFCF is committed to educating patients. CFCF does NOT want to charge fees to patients, especially during this time of economic crisis. We are all struggling to pay bills, especially medical bills in this time of crisis. Come join us for the FREE CFCF Patient Education and Awareness Conference.

How can we provide this free when 100% of individual donations to CFCF go to scientific research?
CFCF works hard to find companies and scientists/clinicians/surgeons who are committed to cancer patients. These talented scientists, clinicians and surgeons are traveling for free and are NOT requesting a stipend to lecture. CFCF is also lucky to have a team of generous volunteers. And, CFCF found donated space for the event at Cedar Sinai. REMEMBER--It IS possible to provide the highest quality education and experience to patients for free. Let's work together to continue this trend.

Among many other freebies, each patient will receive for free:

• A handbook that includes each lecture and recommended reading by each speaker;
• Free copy of "Between Me and the River" by Carrie Host, a metastatic carcinoid patient who has written an extraordinary book about her experience with carcinoid;
• Free Manduka yoga mats that retail for $60 and free instruction in very gentle exercises by a yoga instructor who teaches at cancer centers;
• Breakfast; Lunch; Snacks; Drinks
  
• And more--fun giveaways by seat number!
  

Please join us! But RSVP by mid-March--because everything is provided for free, we must request all attendees to RSVP in advance and will close registration by mid-March.

Leap Into Life!

I survived a 300 foot fall off of the Torrey Pines cliff in La Jolla, CA! Admittedly, I was tethered to a paragliding chute, but I was still terrified, exhilarated and then triumphant.

2009 will be like that cliff that I raced off–full of uncertainty, challenges…but, ultimately, tremendous joy and satisfaction. I am thankful that we are all here now, hopeful for the future and ready to work together to attack the challenges ahead. Together we must overcome a cancer that causes us much pain—physical and mental—and costs us so much—time spent with others, physical stamina, higher health care premiums, and the life we once knew and envisioned for ourselves.

I ask each of you to create your exhilaration. Find that moment that will suspend you high in the air, laughing and in wonder at the beautiful world around you. Then, take that triumph and let it carry you to unite around a common cause – join me to fight for a cure.

I started the Caring for Carcinoid Foundation because I had a vision that one day a patient like me would walk into his/her oncologist’s office and instead of hearing,
“You have an incurable cancer about which we know very little and we have no curative treatments”, patients would hear,
“You have a neuroendocrine cancer. But, because of scientific research, we have a cure.”

When I started the Foundation, many in the carcinoid/NET community said the mission of a cure was unrealistic. But why should a cancer foundation exist if not to find a cure? CFCF persevered with its focused mission and vision, supported by each of you. Three years later, other foundations have joined CFCF in its mission to find a cure and CFCF has accomplished significant steps toward achieving its mission and vision.

In just three short years, the Caring for Carcinoid Foundation is proud to have awarded over $4 million—money raised through hard work, partnerships with other prestigious foundations (including the MTH Foundation and the Raymond and Beverly Sackler Fund for the Arts & Sciences) and the invaluable contributions from each of you. The majority of our donations are for $5 and $20—I am grateful for these many, many generous helping hands. Thank you to each hero who has the strength to give up Starbucks or a dinner out for a month to send us those $5 or $20. I am proud that we are a foundation built brick-by-brick with many generous helping hands.

As a result of your support, in 2009, the Caring for Carcinoid Foundation is kicking off:

• The CFCF National Bioconsortium that unites

Stanford University (Palo Alto, California),

M.D. Anderson Cancer Center(Houston, Texas),

Memorial Sloan Kettering Cancer Center (New York, NY),

Massachusetts General Hospital, and

Dana-Farber Cancer Institute (Boston, MA).

• A large-scale genome project that aims to map the carcinoid genome (via a partnership with the Raymond and Beverly Sackler Fund for the Arts & Sciences).
• An American Gastroenterological Association award via CFCF's partnership with the MTH Foundation (http://www.mthfoundation.org/). Click on this link to read more about the award: http://www.fdhn.org/wmspage.cfm?parm1=72
  
• A clinical-trial finder for patients—to be launched on the CFCF site in February (sponsored by Novartis Oncology).

CFCF is proud of the many partnerships we forged as we accomplished the major initiatives described above. We believe in positive and transformative collaboration. CFCF is proud to have been recognized by such esteemed institutions listed above. We all recognize that these initiatives will transform the carcinoid/related NET scientific field and provide hope to all patients.

For more information about our scientific advances, the initiatives above or to read our free mailing updates, please e-mail info@caringforcarcinoid.org
Send us your name, e-mail and mailing address to receive free, breaking news about carcinoid and related neuroendocrine tumors.

When you write us, tell us what CFCF can help you with—because what you struggle with is what others struggle with also.

Are you interested in information on Medicare?
Do you have ideas on what scientific blogs you would like to see written? Would another blog on radiolabeled treatments be helpful? Let us know—we are here to serve you, to give you hope and support when you need it the most.

Let us all commit to 2009 being our year to leap farther than we have before. Let us raise greater awareness of carcinoid and related neuroendocrine tumors via golf outings, marathons, walks, bake sales, information on our websites, etc. The added benefit of raising awareness is that we also raise funds for much-needed scientific research. This is a tough economic time and so we rely on private philanthropy more than ever.

I appreciate your support.

Change of Date! Celebrate and Love Your Carcinoid-NET Patient, But on March 28 and 29!

The Caring for Carcinoid Foundation's L.A. Event will be March 28 and 29, 2009.

We are still learning, dancing, and running--all in Los Angeles! Just on different days!

I am very happy to bring together the carcinoid/NET community--we need to meet each other, celebrate together, learn from each other and support each other. I think that this weekend will do that. Even better--ALL PROCEEDS from this weekend will go to the whole genome project that CFCF is kicking off for carcinoid cancer. Financial transparency at its best.

March 28th Fun Run in Los Angeles--Half-Marathon/10K/5K/Fun run for kids!
Because the L.A. Marathon has changed its date three times, the Caring for Carcinoid Foundation decided to celebrate instead with the Great Race of Agoura Hills! These races are hugely popular--voted LA's Best Race 5 straight years and the 10K was voted one of the six top 10Ks by Runner's World! On March 28th, join the CFCF Team to run or walk a half-marathon, a 10K, a 5K or a fun-run for kids!

To join us, sign up at Agoura Hills and then e-mail us at info@caringforcarcinoid.org. To sign up for Agoura Hills, please cut and paste the link below into your browser:
http://www.greatraceofagoura.com/

I am thrilled that this race is more inclusive of those of us who can only walk a mile or two or who want to bring our kids/nieces/nephews out to enjoy a fun, sunny day.

CFCF will have a great post-race party at the Agoura Hills event.

A Magical Evening
March 28th's evening will be so special! We will celebrate patients and their caregivers at the Caring for Carcinoid Foundation L.A. Gala Event--Dancing Under The Stars with The Stars.

Join us to be celebrated and dance for the joy of surviving!

Also bid by internet or in person at the silent auction--look for some tasty bargains in these tough economic times.

March 29th--Patient Education!!
Please join pain specialists, nutritionists, pancreatic endocrine specialists, carcinoid cancer specialists, and cutting-edge surgeons (no pun intended!) for a fun interactive day.
Have your questions answered! Before the 29th, we patients and caregivers may send in questions to be answered by the speakers.

Each speaker will have 20 minutes to speak and then I will moderate an interactive, hands-on, question-and-answer session.

No one will talk at you for hours and hours--my experience tells me that I fall asleep quickly after an hour or two! So, instead, I want to focus on what patients want and what questions patients want answered. So, we will have active, live, interactive discussion. You will leave having been heard.

Drop me an e-mail and let me know what you'd like answered. On March 29th, doctors will answer your questions in the order they are received. E-mail now even if you are unsure that you will attend--because we are already holding 20 spots for folks.

JOIN US FOR AN UNFORGETTABLE WEEKEND!!

LOVE YOUR NET PATIENT on Feb 14th and 16th at CFCF's L.A. Gala

Dear Friends,

Learn, dance and run: on February 14 and 16, 2009!

To celebrate the Caring for Carcinoid Foundation's new Los Angeles office, we are celebrating February 14th and 16th. CFCF is organizing an event around the Los Angeles Marathon on February 16th (Note: marathon date just moved from early March).

This is celebration with a purpose--the hallmark of the Caring for Carcinoid Foundation. ALL OF THE FUNDS RAISED WILL GO TO A WHOLE GENOME ANALYSIS OF CARCINOID CANCER.
WHY?
Open any magazine or newspaper--a whole genome analysis of a cancer has the potential to create dramatic change for patients. The result will be greater understanding of the molecular underpinnings of cancers and targeted therapies for patients in years not decades. For example, see today's NY Times (Nov. 6th):
http://www.nytimes.com/2008/11/06/health/research/06cancer.html?hp=&pagewanted=all
(copy and paste link into your browser)

The Caring for Carcinoid Foundation will:
Educate patients on Saturday, February 14th. Nationally-renowned experts will help to inform patients of the latest in carcinoid/related NET understanding and treatment. This will be an active lecture/question-and-answer format. Patients will leave having asked their questions and interacted with the experts.

Celebrate patients at our Gala in Beverly Hills on Saturday night, February 14th. This Valentine’s Day, love your carcinoid/NET patients! Dance under the stars with the stars in Beverly Hills. Lisa Loeb and another opening band will perform, silent and live auctions will occur, and plenty of food and fun will abound.

Run in the LA Marathon to support CFCF’s whole genome project.
What is the goal of this project?
(1) To identify which genes are altered in carcinoid (in comparison to normal tissue) by studying carcinoid DNA with the most powerful new methods available; and
(2) To decipher which of these altered genes can promote tumor growth. After identifying these genes, this project’s long-term goal is to find new or existing drugs that will block the effects of these carcinoid-causing genes, thereby killing carcinoid cells through “targeted” mechanisms. Matthew Meyerson of the Broad Institute and Dana-Farber Cancer Institute will kick off this project—never before performed for carcinoid cancer. Matthew Meyerson was chosen because of his past success in lung cancer whole genome analysis that has led to treatment breakthroughs.
How can CFCF afford to begin this three-year project? Thanks to the incredible enthusiasm of the Pan-Mass Challenge bike team, led by Anne Doyle, which has raised over $300,000 to pay for the first year of funding. Thanks also to the joint collaboration of the Raymond and Beverly Sackler Foundation, who will co-fund this award.
How will CFCF continue to afford this project? Through the support of events such as the LA Marathon, the Chicago Marathon and the PMC.

What does CFCF need?
Your help!
Do you know runners?
Do you know people who want to attend the Gala?
Do you know corporations who want to purchase tables and/or donate items for our silent and live auctions?
Please let me know!

Please ask your friends and fellow patients to join our team, attend our Gala and raise money for a cutting-edge scientific research mission. Let’s celebrate a new era in carcinoid cancer/related NET research.

Thank you!
Nancy