Fulfilling the Mission: Carcinoid Cancer Foundation to Hire Development Director

 

As the Carcinoid Cancer Foundation (CCF) enters its 42^nd year of serving the carcinoid cancer and neuroendocrine tumor community, the Foundation continues to seek new ways to expand upon its mission to REACH for a Cure – Research, Education, and Awareness with Compassion and Hope.  The Foundation’s Board of Directors has just approved the hiring of a Development Director to help CCF bring in additional resources from generous individuals, organizations, businesses, corporations, and foundations.  With these funds, the Foundation will be able to enhance its current programs and create new ones to bring about greater awareness of carcinoid cancer and NETs; to educate the medical community to diagnose and treat these diseases early, enhancing the quality of life for carcinoid/NET patients; and to conduct and support research focused solely on carcinoid and neuroendocrine tumors with the ultimate goal of developing a cure for these rare cancers. 

Consider the consequences:  over 90% of all carcinoid/NET patients are incorrectly diagnosed or initially misdiagnosed.  From the onset of symptoms the average time until proper diagnosis is five years.  Every dollar contributed to the Carcinoid Cancer Foundation can help us change these statistics!

If you are reading this blog and know of a qualified individual to serve as CCF’s Development Director, please send an e-mail to Keith Warner, Chief Executive Officer of the Foundation, at kwarner@carcinoid.org.

Carcinoid Community: We Did It — Drew Brees Won!!

Drew Brees

Thank you to the members of the carcinoid cancer and neuroendocrine tumor community — patients, family, friends, and colleagues – who voted in the Pepsi Refresh Project.   Your votes made the difference and Drew Brees, the New Orleans Saints quarterback, was awarded the $100,000 Pepsi Grant in support of The American Cancer Society Patrick F. Taylor Hope Lodge.  This wonderful facility offers lodging at no cost to patients being treated in the New Orleans area – and that includes carcinoid/NET patients going to see the Neuroendocrine Tumor Team at Ochsner Medical Center – Kenner.  To hear Drew Brees’ message, click here: http://www.nfl.com/partner?partnerType=refresh-project.

Octreoscan Test for Carcinoid & NET Patients Currently on Hold in U.S. and Canada

Due to a voluntary recall by the drug company Covidien, the Octreoscan Kit using Indium In-111 pentetreotide is not available at the present time in the United States or Canada.  This means that carcinoid and neuroendocrine tumor patients cannot have an Octreoscan until the problem is solved.

The Octreoscan test is presently available in Europe, where the product is not experiencing the same issues as that of the Octreoscan manufactured and distributed in the United States.  The reason the product has been recalled in the United States is because some complaints were received of poor labeling yield (also known as radiochemical purity).  If the product were to be used it might show up in unintended locations within the body, possibly resulting in images that are not accurate.

The product was recalled in January.  Because of the short half-life of Indium In-111 pentetreotide, 6 days, there are no lots currently available for use in an Octreoscan in North America.  Covidien is working diligently to determine the cause of the problem and to return new lots of the kit to physicians and hospitals once they are manufactured to Covidien’s standards for the safe and effective use of the product.

As of February 4, 2010, a date has not yet been determined when the Octreoscan Kit will be returned to the market.  It is suggested that patients check with their physicians about the Octreoscan test as the medical community will be informed by Covidien as soon as they have solved the problem and can return the kit to the market.

Carcinoid & NET Patients: Your Vote Is Needed

New Orleans Saints QB Drew Brees

This year, Pepsi is giving away millions in grants each month to fund good ideas that make the world a better place. In celebration of the Super Bowl, Pepsi is teaming up with a trio of NFL players who have each submitted Pepsi Grant ideas of their own. New Orleans Saints quarterback Drew Brees wants “to help support New Orleans in the fight against cancer. My grant would go towards renovating rooms at the American Cancer Society Patrick F. Taylor Hope Lodge to provide patients and their families with a more comfortable stay.”

Dr. Eugene A. Woltering, one of the country’s leading carcinoid/NET specialists, has shared this information with the carcinoid/NET community as many patients stay at the Hope Lodge when being treated at Ochsner Medical Center – Kenner, where Dr. Woltering and his colleagues lead the Neuroendocrine Tumor Program. “One third of all Hope Lodge guests are carcinoid patients,” notes Dr. Woltering.

The Neuroendocrine Tumor Team at Ochsner Medical Center-Kenner

Watch Drew Brees’ video http://www.nfl.com/partner?partnerType=refresh-project and then cast your vote.  The winning project will receive a Pepsi Grant of $100,000. Voting ends February 5, 2010 at 12:00 a.m.

You can also text your vote by mobile phone.  Text “DREW” to Pepsi (73774).  Message and data rates may apply.

What’s a good idea? Who gets a grant? You decide. Read more about the Pepsi Refresh Project and find out how you can submit, promote and vote for the ideas you care about at www.refresheverything.com.

Google Alerts for Carcinoid Cancer and Neuroendocrine Tumors

 

Would you like to have the latest information about carcinoid cancer and other neuroendocrine tumors delivered directly to you in an e-mail, either as it occurs, daily or weekly?  If so, you can sign up for Google Alerts:  http://www.google.com/alerts.  Select your topic, choose if you want comprehensive results, news, blogs, videos, Web, or groups, choose the number of results you want, type in your e-mail address, click Create Alert, and you will soon be receiving  e-mail notifications with links to stories of interest to you.  You can choose any subject, person, place, book, sports team, etc.  One tip:  if the subject you choose has more than one word, such as Carcinoid Cancer Foundation, put the words in quotation marks (“Carcinoid Cancer Foundation”).  You can manage your alerts with a simple click.

Carcinoid Cancer and Neuroendocrine Tumor Patients: Where Do I Start?

There are so many questions when you are newly diagnosed with carcinoid cancer or another neuroendocrine tumor.  Where do I start to learn more about these rare cancers?  When patients or their families call the support and information line at the Carcinoid Cancer Foundation, 888-722-3132, we suggest you start by reading A Review of Carcinoid Cancer by Dr. Richard R.P. Warner, Medical Director of the Carcinoid Cancer Foundation and Professor of Medicine at the Mount Sinai School of Medicine in New York City.  The review is a detailed description of the entire spectrum of carcinoid cancer — its diagnosis, treatments and prognosis.  Click here to read the review:  http://carcinoid.org/pcf/docs/review.shtml.

And if you still have questions, another excellent resource offered on the Carcinoid Cancer Foundation’s website, www.carcinoid.org, is a section devoted to Frequently Asked Questions ranging from “Are the 5-HIAA and serotonin tests conclusive for detecting a carcinoid tumor?” to “What is an Octreoscan?” to “Are all carcinoid tumors cancerous or can some be benign?”  The questions cover topics such as specific tumor locations, symptoms, treatments, and nutritional concerns.  To read the questions, click here:  http://carcinoid.org/faq/index.shtml.

Carcinoid Cancer Foundation Partners with “The Insurance Warrior”

Panic — it’s the feeling in the pit of your stomach upon learning that your insurance company has denied coverage for your medication or treatment.  Laurie Todd, a survivor of late-stage appendix cancer, has gained a reputation as “The Insurance Warrior” because she has fiercely fought insurance companies . . . and won.

The Carcinoid Cancer Foundation is delighted to partner with Laurie Todd to bring information to the carcinoid cancer and neuroendocrine tumor community to help you write your own winning insurance appeals.  Please visit the Foundation’s website often, www.carcinoid.org, to read the latest information from Laurie.  Click here to read the first installment:  http://carcinoid.org/insurance/index.shtml.

When you listen to Laurie speak about fighting insurance companies it is a riveting experience.  She does not use the traditional PowerPoint presentation, a slide show or a video.  She captures your attention with the strength of her words and her conviction to never let anyone be denied insurance coverage for a life-saving medicine or treatment.

“What good is your best course of treatment if your insurer won’t pay?” asks Ms. Todd.  She lists three reasons why insurers deny insurance claims:  1) the treatment/drug is experimental, 2) the treatment/drug is not medically necessary, and 3) you are going out-of-network.

Don’t be intimidated by the insurance company, advises Laurie, intimidate the company.  If denied, the first thing to do is research the company’s appeals procedure; this, according to Ms. Todd, is your roadmap.  Among the other ways to proceed are to find the company’s medical policy statement (this lists the reasons why the company will not pay for treatments) and study the definitions in the back of your insurance book.   The medical policy statement is available on the insurance company’s website. You can also request a copy from the company if you have been denied coverage.  Find the right decision-makers at the insurance company to whom you should address your appeal, and be sure one of them is the Medical Director.

“Purge every accusation, emotion, and feeling word from your appeal,” Ms. Todd counsels as begging, pleading, and giving into feelings do not advance your cause, they will lead to losing your cause. Your appeal is not a medical document but a legal document.  At a minimum of 20 pages long, it should contain a title page, cover letter, table of contents, a bulleted list of facts, attachments, and a conclusion.  The bottom line is that the claim is all about money.  Conclude your appeal with a cost comparison, demonstrating how what you are proposing is less costly than what the insurance company is proposing.

The appeal is “about taking charge when you feel most victimized.  It’s about dignity, grace, and winning a strategy game with the highest possible stakes,” says Ms. Todd.  To gain the benefit of Ms. Todd’s experience as well as very practical tips, visit her website, www.theinsurancewarrior.com, where you can also order her book Fight Your Health Insurer and Win and CD companion piece to the book, The Sample Appeal:  More Insurance Warrior Wisdom.   In the CD, Laurie provides a complete appeal in MS Word format – ready to edit and use.  The Sample Appeal will give you the power to choose the most powerful arguments, find the hidden decision-makers, select the most convincing proof, and win quickly and decisively.

Be your own advocate with advice from the woman who has won over 50 appeals for patients, and has never lost a case against an insurance company.

Video Recording of National Carcinoid Cancer and Neuroendocrine Tumor Patient Conference Now Online

Whether you are newly diagnosed with carcinoid cancer or another neuroendocrine tumor or you are seeking novel treatments for NETs you can gain invaluable information from the video recording of the 2009 National Carcinoid/NET Patient Conference held in New Orleans, Louisiana.  This extraordinary conference was produced by the Carcinoid Cancer Awareness Network (CCAN) of New York in association with Ochsner Medical Center, Kenner, Louisiana.  The 2-day event was attended by some 500 patients, family caregivers, and physicians.  The main goal of the conference, according to Maryann and Robert Wahmann of CCAN, was to “give patients the information they need to make informed choices regarding their medical care and to acquaint them with internationally recognized neuroendocrine experts.”   Presentations ranged from “What Are Biomarkers & Why Are They So Important?” and “Genetics & Risk for Carcinoid” to “Research Drug Trials:  The Role in Carcinoid, Islet Cell & Other NETs.  What Is Useful & What Is Not?” and “Update on PRRT in Germany.”  The event was sponsored by Novartis Oncology, Tercica, and Interscience Institute.

With kind permission from the Carcinoid Cancer Awareness Network you can view the video recordings from the 2009 national conference here: http://www.carcinoidawareness.org/#/09-national-conf-video/4530848001

To view recordings from other carcinoid/NET conferences, please visit the Carcinoid Cancer Foundation’s website: http://carcinoid.org/pcf/lectures/index.shtml

International Carcinoid Cancer & Neuroendocrine Tumor Conference To Be Held in Vancouver, British Columbia, Canada

 

The single biggest international carcinoid cancer and neuroendocrine tumor conference in Canada will be presented by the Canadian Neuroendocrine Tumor Society (CNETS) from Thursday, May 13 to Sunday, May 16, 2010 in Vancouver, British Columbia.  The theme of the conference for patients, caregivers, and medical professionals is Neuroendocrine Cancers: Networks of Expertise.  Leading neuroendocrine specialists from eight countries will come together with the patient and medical community to discuss diagnosis and treatment. The beautiful Coast Plaza Hotel, overlooking English Bay and Stanley Park, will be the venue for the conference.  Space is limited to 375 attendees.  Conference planners are very excited about the event and, according to Maureen Coleman, President of CNETS, “are working very hard to make the conference be the best it can be.”

The guest speakers for the conference are some of the leading carcinoid cancer/ neuroendocrine tumor specialists in the world.  Please click on each name to read their bio:

Prof. Joy Ardill, Researcher, Peptide Lab, Belfast, Ireland
Prof. Dr Rudolf Arnold, Internal Medicine, Marburg Germany
Prof. Sylvia Asa, Pathologist, Toronto, Ontario
Dr. John Buscombe, Nuclear Medicine, Royal Free, London, UK
Dr. Herbert Chen, Chief, Section of Endocrine Surgery, University of Wisconsin
Dr. Wouter de Herder, Consultant Endocrinologist, Erasmus MC, Rotterdam, Holland
Dr. Bryan Dias, Cardiologist, London, Ontario
Dr. Al Driedger, Professor Emeritus, Nuclear Medicine, London, Ontario
Dr.Dan Granberg, Endocrine Oncologist, University Hospital, Uppsala, Sweden
Dr. Tony Heaney, Neuroendocrinologist, David Geffen School, Los Angeles, LA
Dr. Hagen Kennecke, Medical Oncologist, Vancouver, BC
Dr.Walter Kocha, Medical Oncologist, London, Ontario
Dr. Eric Krenning, Nuclear Medicine, Rotterdam, Holland
Dr. Larry Kvols, Internal Medicine, Oncologist, Florida, US
Dr. David Liu, Interventional Radiologist, Vancouver, BC and Los Angeles, CA
Dr. Eric H Liu, Surgical Oncologist, Vanderbilt University Medical Center, Tennessee
Dr Sandy Mc Ewan, Nuclear Medicine, Edmonton, Alberta
Dr. Irvin Modlin, Prof Gastroenterological Surgery, Yale University, Connecticut
Dr. Sue O’Dorisio, Pediatric NETs, Iowa City, Iowa
Dr. Thomas O’Dorisio, Endocrinologist, Iowa City, Iowa

Dr. Dermot O’Toole, Gastroenterologist, Trinity College Dublin, Ireland,
Dr. Donald Poon, Consultant Medical Oncologist, National Cancer Centre, Singapore

Dr. Daniel Rayson, Medical Oncologist, Halifax, Nova Scotia
Dr. Susan O’Reilly, VP,  BC Cancer Agency ,Vancouver
Dr. Janice Pasieka, Surgical Oncologist, Calgary Alberta
Dr. Rodney Pommier, Surgical Oncologist, Portland, Oregon
Dr. Robert H Reid, Nuclear Medicine, London, Ontario
Dr. Riad Salem, Interventional Radiologist, Northwestern U, Chicago, Illinois
Prof.Girish Shah, Researcher, Laval University, Quebec City, QC

Dr.Simron Singh, Odette Cancer Centre, Sunnybrook Health Sciences Centre, Toronto

Dr. Ehud Ur, Neuroendocrinologist, Head, Division of Endocrinology, University of British Columbia
Dr. Jean-Luc Urbain, Nuclear Medicine, London, Ontario
Dr.Aaron Vinik, Endocrinologist, EVMS, Norfolk, Virginia
Dr. Richard R.P. Warner, Professor of Gastroenterology, Mount Sinai School of Medical, New York, NY
Dr. Edward Wolin, Medical Oncologist, Cedars Sinai Medical Center, Los Angeles, CA
Dr. Eugene Woltering, Surgical Oncology, New Orleans, Louisiana
Dr. Janice Wright, Inspire Health, Vancouver, BC 

Peter Goodhand, the National CEO of the Canadian Cancer Society, will be at the conference for two days.

Click here to read more about the hotel: http://www.coasthotels.com/hotels/canada/bc/vancouver/coast_plaza/overview.

For further information about the conference or to register, visit the CNETS website at http://www.cnetscanada.org/index.html or contact Maureen Coleman, President of CNETS, by phone at 416-544-8467 or by e-mail at info@cnetscanada.org.

Grocery Shopping Tips & Comfort Food for Carcinoid Cancer and Neuroendocrine Tumor Patients

If you are feeling especially ill, whether it’s from the effects of carcinoid and other neuroendocrine cancers, recent surgery or treatments, grocery shopping can be an overwhelming excursion.  Family and friends can offer this invaluable service or you can choose an online shopping service with delivery to your home.  Peapod and its partner, Stop & Shop, deliver in Rhode Island, Connecticut, Massachusetts, Maryland, Virginia, New Jersey, in New York in Long Island and Westchester County, Washington, DC, the greater Chicagoland area, and in Milwaukee and southeastern Wisconsin.  To read more about this service go to www.peapod.com.  One carcinoid patient told us the service brought all of the packages into her kitchen, saving her the burden of carrying heavy bags with bottles, etc.  You can even use coupons when you use this service.  Check it out!

You can find other online grocery shopping and delivery services in your area with a search on Google.  Among the other services are Netgrocer, a nationwide service,  http://www.netgrocer.com/; WeGoShop, http://www.wegoshop.com/; and Schwans, http://www.schwans.com/.

When we are feeling ill, stressed, or sad, comfort can be found with friends and family, coworkers, support groups, or food.  Comfort foods bring back memories of childhood, family, celebrations, and happy times.  For patients coping with cancer, comfort foods, with their flavors, aromas, textures, and ingredients, may help soothe anxiety, provide nourishment for body and soul, and help renew your spirits.  In the Winter 2010 issue of Cancer Fighters Thrive (see www.cfthrive.com), there are several tips for families and friends providing meals for loved ones.  These include:

• Use disposable containers so the recipient doesn’t have to worry about washing or returning the dishes.

• Choose meals based upon both patient preferences and nutritional value.

• Lotsa Helping Hands (www.lotsahelpinghands.com) is a free, Web-based community to “organize family, friends, neighbors, and colleagues – a family’s ‘circles of community’ — during times of need. Easily coordinate activities and manage volunteers with an intuitive group calendar.“ Using this site you can “coordinate meals, organize rides to medical appointments, manage logistical tasks that come with caregiving, and provide medical status updates.”

For more information about nutrition for carcinoid cancer and neuroendocrine tumor patients, visit the Carcinoid Cancer Foundation’s website at: http://carcinoid.org/pcf/nutrition.shtml.