What does the HealthWell Foundation do?  It provides financial assistance to eligible individuals to cover coinsurance, copayments, healthcare premiums and deductibles for certain treatments. This means that for patients who have been prescribed a medication and their insurer covers it, but the patient cannot afford the coinsurance or copayment required, HealthWell may be able to help by paying some or all of the costs associated with the medication. Also, for those eligible for health insurance who cannot afford the insurance premium, HealthWell may be able to help by paying some or all of the medical portion of the insurance premium.

To determine eligibility for the program, click here: http://healthwellfoundation.org/eligibility.html

For further information, visit the HealthWell Foundation’s website, http://healthwellfoundation.org/, or call (800) 675-8416, 9:00 am to 5:00 pm Monday through Friday, Eastern Time.  E-mail inquiries can be sent to info@healthwellfoundation.org.

As a follow-up to our blog about a carcinoid patient appearing on the Dr. Oz Show, we would like to share an update.  When we were informed that a carcinoid patient was appearing on the Dr. Oz Show, we thought that carcinoid was going to be mentioned in the show.  Lisa, the carcinoid patient who appeared in the opening segment, described her symptoms but there was no mention of carcinoid.  Lisa had been taped for two days.  She posted on the Carcinoid Cancer Foundation’s blog:  “I am the carcinoid cancer patient that was on Dr. Oz. It was a great experience. Just wish I could have spoken more about carcinoid.”  Watch Lisa here.

We share the disappointment of all who watched the show anticipating a mention of carcinoid.  The episode that aired is the final version created by the editors and producers of the show.  Much of what was taped ended up on the cutting room floor.  We would like to thank Lisa for doing all she could to talk about carcinoid and bring about greater awareness of NET cancer.  She posted on CCF’s Facebook page:  “I am seeking out another venue. I will keep you posted. I will be giving a survivor talk at the Relay 4 life in Nutley and I will be filling their ears on carcinoid as I do every meeting. “  Thank you, Lisa, we are so appreciative for your continuing efforts to educate others about carcinoid.

This reinforces the need for the Carcinoid Cancer Foundation to continue its vigilant efforts to bring about greater awareness of carcinoid and NET cancers.  The Dr. Oz Show is the perfect example of confusing stomach cancer and carcinoid cancer. We must continue to educate both the public and the medical community about these rare diseases.   We will continue to work tirelessly to educate about NET cancers.  Thank you for your support!

With deepest appreciation from The CCF Team

In the New York/New Jersey metropolitan area the show is on Fox 5 TV and airs at 4 pm.  Click here to visit The Dr. Oz Show website to see the list of episodes for the week.  You can find the station and air time for the show based on where you live.  Please note there is a possibility dates for episodes will change so check again on January 5th!

Dr. Oz is professor of surgery at Columbia University. He directs the Cardiovascular Institute and Complementary Medicine Program at New York–Presbyterian Hospital. Complementary medicine, healthcare policy, and heart replacement surgery are among his research interests. Dr. Oz appeared on The Oprah Winfrey Show for five seasons.   He is the author of over 400 original publications, book chapters and medical books and has received several patents.

What’s Your Risk for Stomach Cancer?  Click here to see the video.

Thank you, Dr. Oz, for helping to bring about greater awareness of carcinoid and NET cancer!!

Marlena Johnston and partner, Gary Hull

Marlena Johnston’s blog, Channeling Jackie-O, offers readers a glimpse into Marlena’s life as a carcinoid survivor; an English teacher at a high school in New Jersey; supporter of NET cancer awareness; and more. “Everybody needs a hero; for me, it’s Jacqueline Kennedy Onassis, affectionately known as Jackie-O. For as long as I can remember, when things became difficult, my mother would always tell me to think of Jackie-O and how she would handle the situation – with perfect grace. That is the purpose of this blog, to allow me to channel some of Jackie-O’s intangible grace and dignity in meeting my latest challenge: surviving carcinoid cancer.”  When Marlena was first diagnosed with carcinoid cancer of the appendix in April 2010, she went to the Carcinoid Cancer Foundation’s website and embarked on a journey to learn all she could about her rare disease.  She began with Newly Diagnosed: The Basics and then immediately went to Survival Stories.  “Seeing those smiling faces of carcinoid/NET survivors was really important for me,” says Ms. Johnston.    Read more

Lucy Wiley, Lucysnoidblog, was diagnosed with carcinoid cancer in the ileum in 2006. Her blog, started in October 2008, covers everything from a video on how to mix black raspberry powder, used by many patients to help with carcinoid syndrome symptoms such as diarrhea;  PRRT; a form letter protesting Medicare policy; travel tips for carcinoid patients in Europe; and the nanoknife procedure for carcinoid tumors.  We recommend Lucy’s blog for an extraordinary amount of practical and varied information for carcinoid survivors. Read more

Sunny Carney is an amazing woman.  Wife, mother of 3 sons, daughter, sister, aunt, godmother, outreach volunteer, business owner, and a woman of extraordinary faith.  Her blog, Sunny Carney Carcinoid Cancer Fund,  chronicles all she has been through since a diagnosis of ovarian cancer 14 years ago.  A carcinoid survivor, Sunny has extraordinary support from friends, family and her community in Pennsylvania.  She recently published her first book, The “Sunny” Side of Cancer, which is available for purchase through her blog and will be on Amazon.com in January 2012.  Sunny will return to Switzerland in January 2012 for Y90 (Yittrium-90) treatment. Be sure to watch her video too (available via her blog, see link on the right-hand side).  Read more

Sunny Carney with husband, Mark, and sons

Tracy Krulik was formerly a fundraiser and musician, now she describes herself as “the CEO of my health.”  She spends her time “fighting cancer, writing, teaching, practicing Pilates, putting ridiculous amounts of miles on my road bike, growing vegetables and cooking fresh, plant-based meals.”  A pancreatic NET survivor, Tracy was diagnosed in 2007 after many years of pain and illness.  Read more about her journey in her blog, I Have Cancer. And I’ve Never Felt Better.  Be sure to visit the “About Me”  section and read the articles that have been written by and about Tracy.  She’s a very gifted writer and is a contributor to MedPageToday’s KevinMD.com, social media’s leading physician voice.  Read more

Lindsey Miller recently decided to speak publicly about the fact that she has cancer.  She created a video that has since gone viral, asking out the actor Joseph Gordon-Levitt for a cup of coffee. Lindsey’s blog, i am a liver, chronicles her journey as pancreatic neuroendocrine tumor (pNET) “liver.”  She is 26 and is pursuing a master’s degree in urban planning. Lindsey was diagnosed in October 2010, just after her 25th birthday. “With cancer,” writes Lindsey, “there are generally three categories of living patients:  those in treatment, those in remission, and those who have been cancer-free for many years (survivors).  I don’t fit fully into any of these categories so I made up a new one:  I am a liver.” Her blog is especially valuable for her perspective as a patient in her 20′s.  Read more

Susan Anderson’s website, http://www.carcinoidinfo.info/, is the first carcinoid patient website, created in 1997. Susan is a carcinoid patient and NET cancer awareness advocate. Her website has a wealth of information and should be one of the first personal websites you visit. She is a longtime carcinoid and breast cancer survivor with an aggressive approach to maintaining an active lifestyle. “Lead a full and active life while LIVING with Cancer” is Susan’s motto. On her website you will find information and links to medical/drug databases, support groups, humor, books, music, prayer lists, travel, political issues, cowboy poetry, and much more. The late Monica Warner of the Carcinoid Cancer Foundation described Susan as “The Grande Dame of Carcinoid”! Members of the carcinoid/NET community frequently comment on how valuable Susan’s website has been for them when they were newly diagnosed and as they live with NET cancer throughout the years. Read more

Welcome to My Story is Kari Jones’ website. Kari is a carcinoid survivor who shares her journey very candidly in photos and a timeline, from diagnosis in 2006 at the age of 26, 7 years after showing symptoms of abdominal pain and flushing.  She also talks about her experiences  in a blog that is part of her website. Kari established the first carcinoid support group in Indiana in July 2008.  “I continue to find hope by reaching out to other carcinoid patients and getting involved in the fight against cancer,” Kari writes. “I hope that by sharing my story I will be able to inspire others into action, as well as giving hope and support to those that are out there struggling with this disease.  Kari has also produced a very moving and inspiring video, Carcinoid and NET Cancer Awareness, to help share her story and to raise awareness for this rare disease. The Carcinoid Cancer Foundation,  www.carcinoid.org, is very pleased to share this video on the homepage of its website.  Read more

A transplant patient’s Christmas miracle is the title of an article in the Gainesville Times about Don Little.  Nearly 100 well-wishers were at the airport recently to welcome  Don, a  pancreatic neuroendocrine tumor survivor, as he returned home for the holidays after recovering in the hospital for nearly 9 months from a multi-organ transplant involving his stomach, pancreas, liver, and small intestine.  Read more

Don Little (far right), pancreatic neuroendocrine tumor survivor, and his wife Debbie with friends, Jerry and Beth Lathem, last Christmas, about 3 months before undergoing multi-ogran transplant surgery

Bob Thompson (left) and his physician, Dr. Joseph Tector

Five years ago Bob Thompson was given a preliminary diagnosis of pancreatic cancer and was told he would probably have less than 6 months to live. Bob actually had a neuroendocrine tumor on the pancreas. Read more about the incredible multi-organ transplant operation that changed his life:  http://indy.st/u8l1e8.    Click here to learn how he was diagnosed and about the surgery his doctor recommended.

A wonderful article about hope and strength — Kelly Taylor-Li is a pancreatic neuroendocrine tumor survivor in Massachusetts.  This is her 14-year journey as a cancer patient, and about living life to the fullest every day. Read more

Master Sergeant Aki Summers

These are stories of courageous carcinoid and pancreatic neuroendocrine tumor (NET) survivors who, in several cases, experienced pain and illness for many years before being correctly diagnosed. Meet Tracy, Lindsey, Aki, Carolyn, Lisa, and Kari (see her video below). They serve as inspirations to other NET cancer patients, those who are newly diagnosed and those living with these rare diseases for many years. Their stories also bring hope, an essential factor on the journey of living with cancer. Read more

Cycling 10,000 miles a year! Carcinoid patient Reine Wiley is one of five Californians who’ve been named Breakaway from Cancer champions this year.  Read more 

Don Meyer, former record-breaking coach of the Northern State men’s basketball team, continues to be an inspiration. He learned he had carcinoid following his hospitalization due to a serious car accident. Undeterred, he returned to the sidelines “setting the new standard for coaching wins for a men’s college coach.” Now Don has embarked on a multistate tour where he speaks about leadership. Read more

Don Meyer, former Northern State men's basketball coach

The all-time leader in coaching wins in NCAA men’s basketball history, Don talks about his retirement. Read more

Imagine the strength, endurance, and determination it takes to run races and marathons. Now consider running with only one lung. This is an inspirational story about two lung carcinoid survivors:  Deirdre Durant and Kenneth Todd. Read more

Stephanie Bennett is  a 15-year-old MEN2A survivor.  MEN (multiple endocrine neoplasia) is a neuroendocrine cancer that runs in families. Stephanie’s mom, sister, aunt, and three cousins also have this rare neuroendocrine disease. Stephanie’s softball teammates have been incredibly supportive during a difficult time.  Read more

1)     The FDA approved the first new treatments in nearly 30 years for pancreatic neuroendocrine tumor patients with unresectable, locally advanced or metastatic disease:  everolimus (Afinitor) by Novartis and sunitinib (Sutent) by Pfizer. Read more about Afinitor and Sutent.

2)     Steve Jobs, the iconic co-founder and former CEO of Apple, died on October 5, 2011. Mr. Jobs was diagnosed with an islet cell pancreatic neuroendocrine tumor (NET) for which he had surgery in 2004, followed by a liver transplant in April 2009.  In late August of this year he stepped down from his role as Chief Executive Officer of Apple. Click here for media coverage.

3)     For the first time in North America, neuroendocrine cancer patients have the opportunity to participate in a clinical trial of Lutetieum-177 (LU-177) with Octreotate.  This new drug clinical trial brings the much-needed therapy of PRRT, peptide receptor radionuclide therapy, to the United States.  The clinical trial is ongoing at Excel Diagnostics and Nuclear Oncology Center in Houston, Texas under the direction of Ebrahim S. Delpassand, MD (pictured below). Approximately 40 patients have participated in the clinical trial to date, with the first patient starting the trial at the end of October 2010.

4)     The second Worldwide NET Cancer Awareness Day united the NET cancer community around the world on November 10, 2011. A global video event aired on the NET Cancer Day website as the sun rose in Australia and moved across Europe to Canada and the United States. Thirty-seven US governors issued proclamations and letters of support for NET cancer awareness. A flag was flown over the Capitol in Washington, DC in recognition of WNCAD.  Events and activities ranging from awareness walks and galas, the release of informational videos, distribution of materials at hospitals and shopping malls, and conferences for patients and medical professionals took place on 5 continents!

5)     The first World Congress on Ga-68 and Peptide Receptor Radionuclide Therapy (PRRNT), Theranostics – On the Way to Personalized Medicine, was held in Germany in June.  The Congress was the creation of Prof. Dr. med. Richard P. Baum from Zentralklinik Bad Berka and Prof. Dr. sc. Nat. Frank Rösch of the Johannes Gutenberg University, Mainz.

6)     More than a dozen conferences for carcinoid and NET cancer patients, families, and medical professionals were held in the United States from New York to California, sponsored by organizations including the Carcinoid Cancer Foundation, the Carcinoid Cancer Awareness Network (CCAN), Caring for Carcinoid Foundation, the New Jersey Carcinoid Cancer Network, and NANETS (North American NeuroEndocrine Tumor Society) and 2 regional conferences, one in Texas and one in Indiana, were presented collaboratively by CCAN, InterScience Institute, and Ochsner Medical Center Kenner.

7)     Jan Naritomi-Hart was selected as the winner of the 2011 Warner Advocacy Award. Presented by Novartis Oncology through Patient Advocacy and The NET Alliance^TM, the award is given to the individual who best embodies the spirit, passion, and dedication of Monica Warner, a driving force behind the Carcinoid Cancer Foundation for two decades and an extraordinary advocate for carcinoid and neuroendocrine tumor survivors. A pancreatic NET patient, Jan has been vital in helping to raise awareness of NET cancer as a support group leader, supporting fundraising efforts of NET cancer organizations, and participating in conferences both helping to plan conferences and as a patient panel member. Read more about Jan and about the Warner Advocacy Award.

8)     The Carcinoid Car made it to the final round as one of the top 10 finalists in the NASCAR Sponsafier competition. What is the Carcinoid Car?  It’s a specially designed, virtual Toyota Camry entered into the Sponsafier 4 competition by Danielle, daughter of a carcinoid patient, to help bring about greater awareness of carcinoid cancer.

9)     Carcinoid cancer was the focus of the April calendar page for the 2011 Expressions of Hope calendar published by the ASCO (American Society of Clinical Oncology) Cancer Foundation. The calendar illustrations have been created by cancer patients, family members, friends, and caregivers to share their emotions through art and inspire hope in others.  The oil painting “The Song Bird Keeps Singing” is the work of Adria Di Maria, mother of carcinoid patient Marlena Johnston, who was diagnosed with carcinoid cancer in 2010.

10) Novartis Pharmaceuticals introduced iWalk for Carcinoid, a virtual walkathon that helps support carcinoid-related organizations. Participants are able to “walk” without leaving home, while learning more about carcinoid syndrome and raising money for a good cause. Click here to register for iWalk for Carcinoid.

• Amazon offers many different zebra ornaments, ranging from the rhinestoned zebra from the Zoology Collection to a knitted zebra from Colombia. Check out the set of 4 animal print glass ball ornaments, the Zebra Red Gift Box Ornament (only 17 left!), and the Fashion Avenue Zebra Print on Bootie Shoe Ornament.

• From Café Press, there is the Born to Be Unique oval zebra ornament. The design is also available on a wall clock, throw pillow, t-shirt, apron, and bumper sticker! Many wonderful zebra ornaments to choose from!!

• Thank you notes to invitations, there’s a zebra print to fit every one of your stationery needs!
• For all the travelers out there, do you have a personalized zebra luggage tag? You might also wish to purchase zebra print luggage or bags for every occasion!
• Adopting a zebra for yourself or a loved one is definitely a unique gift!  Available in adoption kits of $100, $50, or $25, you can adopt a Burchell’s zebra from the WWF, the world’s leading conservation organization. WWF works in 100 countries and is supported by 1.2 million members in the United States and close to 5 million globally. Burchell’s zebras are the most abundant of the three zebra species and live in the savannahs of Eastern Africa. They usually travel in herds, but disperse during the day to graze alone on coarse grasses, gathering later to find water. No two zebras look exactly alike, as stripes vary between individuals. Living in permanent small family groups, Burchell’s zebras commonly mix herds with antelope, adding extra protection against predators. These equines are threatened by habitat loss.There are also many zoos that offer the opportunity to adopt a zebra – from the Edinburgh Zoo in the United Kingdom  to the Woodland Park Zoo in Seattle, Washington . Zebra adoptions are also available at the Tampa Lowry Park Zoo , at the Toronto Zoo , the Saint Louis Zoo , the Philadelphia Zoo, and Zoos Victoria, three zoos in Australia, among others.   There a wide variety of zebras that you can adopt for yourself or as a gift for the animal lover in your life.

• Buy Your Wild Side,  TheLeopardPrintMonkey.com has zebra print everything!  Cake servers, stationery sets, iPad cases, photo albums, bedding, curtains, pens, envelopes, shoes, bath ensembles, gift tags and more!

• From zebra fondant wedding cakes to a safari photo album, scarves to shoes, handbags to smart phone covers, CLICK HERE for 26 pages of zebra prints for every occasion and taste!

• At Nashville Wraps, there are eco-friendly zebra gift bags; boxes; wrapping paper; tissue paper; sheer, cotton and curling ribbon; and other items for all of your holidays gifts.

• For additional zebra print items, read our blog, All Things Zebra for Carcinoid and Neuroendocrine Tumor Awareness.

Hope for the Holidays: Please support the Carcinoid Cancer Foundation’s mission of awareness and education, support, and patient advocacy.  Together we make a critical difference! Click on the zebra ribbon above to help us as we serve patients and their families, the public, and the medical community.  THANK YOU!

Lisa Pawlak was diagnosed with atypical lung carcinoid two weeks after her younger son, Jonah, started kindergarten. “I had lost my own mother, also a non-smoker, to lung cancer right before getting pregnant with Jonah.  As a result, when I was first diagnosed, I feared the worst.  I feared that I might not be around to send my boys back to school in the future.” Surgery followed with the removal of half of her left lung.  Fortunately, there had been no metastasis.  It’s now two years later and, in her beautifully written and moving story, Lisa (pictured with older son, Joshua) reflects upon being a carcinoid survivor. “So I take a deep breath, because I can – and I simply hope.  Because for me, what does matter is hope. . . . I take an even deeper breath.  Hope matters, and so I hope for the thing that matters to me most.  I hope that next year I will still be here as my boys once again go back to school.  I hope to send them off with new, though generic-brand, shoes on their growing feet, and with unsharpened pencils tucked away in their not-so-perfect, crumpled-up-paper-filled, slightly-gooey-crumb-bottom-lined, backpacks.”

Tracy Krulik was formerly a fundraiser and musician, now she describes herself as “the CEO of my health.”  She spends her time “fighting cancer, writing, teaching, practicing Pilates, putting ridiculous amounts of miles on my road bike, growing vegetables and cooking fresh, plant-based meals.”  A pancreatic NET survivor, Tracy was diagnosed in 2007.  Read more about her journey in her blog, I Have Cancer. And I’ve Never Felt Better.  Be sure to visit the “About Me”  section and read the articles that have been written by and about Tracy.

Lindsey Miller’s  blog,  i am a liver,  chronicles her journey as pancreatic neuroendocrine tumor (pNET) “liver.”  She is 26 and is pursuing a master’s degree in urban planning. Lindsey was diagnosed in October 2010, just after her 25th birthday. “With cancer,” writes Lindsey, “there are generally three categories of living patients:  those in treatment, those in remission, and those who have been cancer-free for many years (survivors).  I don’t fit fully into any of these categories so I made up a new one:  I am a liver.”  A very gutsy young lady, Lindsey took an amazing leap recently.  Check out her YouTube video!

In 1992 Carolyn Woolman was diagnosed with metastatic pancreatic cancer.  After two years on chemotherapy she requested another biopsy and found out that she had carcinoid cancer.  Extensive surgery, chemoembolizations, and chemotherapy were used to treat Carolyn for carcinoid tumors in her liver, stomach, and small bowel.  She credits carcinoid/NET specialist Dr. Edward Wolin, Co-Director of the Cedars-Sinai Carcinoid and Neuroendocrine Tumor Program in Los Angeles, California, with saving her life.  “It is now 2011 and I remain cancer free . . . To say that I am blessed to have found Dr. Wolin would be such an understatement. He not only saved my life but has given me years to make memories with my friends and family. I never thought I would live to see 40 and now I am 66.  I am active in my grandkids’ school and try to appreciate every day.”

Master Sergeant Aki A. Summers has been with the US Air Force for 18.5 years and is currently serving on Active Duty in the Republic of Korea.  She was diagnosed this past January with carcinoid in the small intestine. She has written two articles that she would like to share with others in the carcinoid/NET and broader cancer communities:  Commentary — Overcoming a life-ending disease: Cancer and Nutrition Can Help Battle Cancer.

Also watch a new video, released on November 10, Worldwide NET Cancer Awareness Day,  created by carcinoid survivor Kari Jones to help bring about greater awareness of carcinoid and NET cancers.  Humor, strength, adventure, hope — this is Kari’s story. To learn more about Kari,  visit her website, My Carcinoid Story.

Read these amazing stories as well as the blogs and stories of other carcinoid and neuroendocrine cancer survivors.  Click Here to be inspired by many exceptional men and women.

Hope for the Holidays: Please support the Carcinoid Cancer Foundation’s mission of awareness and education, support, and patient advocacy.  Together we make a critical difference! Click on the zebra ribbon above to help us as we serve patients and their families, the public, and the medical community.  THANK YOU!

Hosting the conference are the NorCal CarciNET Support Group and the UCSF Helen Diller Comprehensive Cancer Center.  Josh Mailman, President of NorCal CarciNET, will welcome guests and introduce the speakers. Guests are encouraged to stay and network post conference.

The guest speakers and their topics will be:

• Emily K. Bergland, MD, Professor of Clinical Medicine, UCSF, “Basic Understanding and Treatment of NETs and the Clinical Trials Process”

• George Fisher, MD, Director of the Cancer Clinical Trials Office, Stanford University School of Medicine, “Clinical Trials at Stanford”

• Joseph Herman, MD, radiation oncologist, Johns Hopkins Kimmel Cancer Center, “Palliative Role of Radiation in Patients with Metastatic or Locally Advanced NET”

• Eric Liu, MD, Director of Surgical Services, Vanderbilt Neuroendocrine, Vanderbilt University Medical Center, “Advances in NETs Imaging”

There is a $10.00 registration fee.  The conference will be held at the UCSF Mission Bay Campus, Fisher Banquet Auditorium, 1675 Owens Street, San Francisco from 8:30 am to 1:00 pm.  CLICK HERE to register.

Throughout this unique series we will focus on topics of importance to carcinoid and neuroendocrine tumor (NET) community.  Why is the series unique?  Because we’re reaching out to the community for requests on topics of interest related to carcinoid and NETS. Please send an email to carcinoid@carcinoid.org with your suggestions for video topics.

Once the most requested topics are selected, we will announce the speakers who will be featured in the videos and you will have an opportunity to submit questions that can be answered by these speakers.  We hope to provide answers to questions for which information is not readily available on our website or other carcinoid/NET websites.  Dr. Richard R.P. Warner, Medical Director of the Carcinoid Cancer Foundation, will review all submitted questions and choose the ones to be answered by the speakers.

Awareness and education are the first critical components in the fight against carcinoid and NET cancers.  Early detection and diagnosis can both enhance the quality of patients’ lives and extend their lives.  The Carcinoid Cancer Foundation is dedicated to bringing about this awareness as advocates for all who are currently living with carcinoid and related neuroendocrine tumors, their families, and those yet to be diagnosed. We are honored to be of service to this community and hope that our efforts continue to make a difference in your lives.

Sincerely,

Keith Warner
Chief Executive Officer
Carcinoid Cancer Foundation