Clinical trials--more clarity

Patients and Clinicians:

I urge you to read the following important announcement about clinical trials.

This announcement is from the Neuroendocrine Task Force (NTF). I am a patient advocate on this national task force. The NTF's membership comprises the leading clinicians and scientists in the neuroendocrine field.

The main point is of the announcement is:
The NTF supports clinical trials with angiogensis inhibitors in neuroendocrine tumors.

To read the NTF announcement, please connect to the CFCF link below.

Listed there first you will see the announcement--the title begins with "August 10th, 2009".

http://caringforcarcinoid.org/news/announcements.asp

Please contact me with any questions.

nancy.ohagan@caringforcarcinoid.org

Free Boston Awareness Weekend

I hope everyone is having a wonderful summer!

I am thrilled about the upcoming free CFCF Boston Awareness Weekend. I can't wait to meet more patients and celebrate and learn with all of you. Please join us for part or all of the weekend.

NOTE: ALL of these events described below are almost sold-out. I urge you to RSVP now if you would like to attend. Call 617-848-3977 now.

FREE Boston Awareness Weekend Hosted by CFCF--

September 11-13: A Weekend of Education and Celebration!

• Everything is free for all NET patients, their family and friends.
• CFCF promotes FREE awareness events in order to help emotionally heal, educate, and unite patients, their family, friends, and physicians.
• Thank you to our sponsors who make these free events possible: Pfizer, Harlequin, Molecular Insight Pharmaceuticals, Endo-Pharmaceuticals, the House of Blues, and, above all, Massachusetts General Hospital. These organizations are truly investing in helping you get well and stay well.

HEAL & LISTEN:

Friday, September 11 from 5 pm to 6:30 pm--

Join author and carcinoid patient Carrie Host for a reading from her extraordinary memoir, "Between Me and the River". Carrie's words will resonate with you.

For more information about Carrie, please visit her website:

www.carriehost.com

I give copies of Carrie's book to doctors, family members and friends so that they will better understand our experience. I keep my copy by my bed--to read her words during times of horrendous pain. Carrie's words will give you hope to endure and the hope of another day.

Where: Massachusetts General Hospital (MGH) Cancer Center's peaceful Howard Ulfelder, MD Healing Garden, with its amazing view of Boston.

Drinks and snacks provided courtesy of Harlequin.

EDUCATION:

Saturday, September 12 from 8am until early afternoon

Join CFCF for an incredible educational opportunity.

National experts in carcinoid and related NETs will speak and answer questions on topics ranging from "Newly diagnosed--what now" to "Surgery--when?".

Please see the CFCF link below for more detailed information and to RSVP.

www.caringforcarcinoid.org/Patient_Seminar.pdf

Where:

STARR Center, Charles River Plaza, next to Massachusetts General Hospital.

Logistics:

Lunch, snacks, drinks, notepads and goodie bags provided. No need to bring anything but yourself!

HUGE THANKS to our co-sponsor: the Network for Patients and Families at the MGH Cancer Center. Also, thanks to Pfizer, Molecular Insight Pharmaceuticals and Endo Pharamceuticals--all companies that are interested in your cancer and working hard on your behalf.

CELEBRATION:

Saturday, September 12 from 5:30 pm to 7:30 pm and beyond

Where: Private, Members-Only Foundation Room at the House of Blues, Fenway Park.

Celebrate the joy of surviving with your doctors, fellow patients, friends, and family members.

Enjoy free food, free drinks, enter a raffle with an amazing prize, bid at a live auction and silent auction!

Logistics: Free shuttle service from the STARR Center, MGH to the House of Blues and back from 4:45-7:45pm.

CAMARADERIE:

Sunday, September 13--morning-early afternoon:

Please join the CFCF Walk Team:

There is a small registration fee and a commitment to raise $200.

All money will benefit the CFCF-funded large-scale carcinoid genome project at Dana-Farber Cancer Center.

Please give yourself the gift of a cure and give back to CFCF. Sign up here:

https://www.kintera.org/faf/search/searchTeamPart.asp?ievent=297511&lis=1&kntae297511=32B3B428D723491A9B3B77CC7E58BC98&supId=253505887&team=3386186

Logistics:

Walk distances from 1-26.2 miles, all along the famed Boston Marathon Route.

Look for the blue and yellow t-shirts (which you will receive as part of the team).

Celebrate at the end in Copley Plaza with free food, drink, and freebies.

Nancy's Team: I will be sleeping in after the House of Blues festivities. Join my 3 mile walk team at 2pm!

WEEKEND LOGISTICS:

Friday and Saturday's events are at Massachusetts General Hospital, easily reachable by public transportation (commuter rail or the T), by 93, Storrow Drive, etc.

**If anyone attending is willing to pick up fellow patients and/or carpool to reduce costs, please call the Caring for Carcinoid Foundation and put your name on the Carpool List.

**If any patient cannot attend due to transportation difficulties, call the Caring for Carcinoid Foundation. 617-848-3977.

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.