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ThyCa NEWS NOTES Contents
Study Shows High Use of CAM by People with Thyroid Cancer Paris, France — Over 80% of thyroid cancer patients report using some form of complementary and alternative medicine (CAM), according to a study conducted by Boston University Medical Center researchers in cooperation with ThyCa, and reported at the 14th International Thyroid Congress in September. This use of CAM is about double that of the general population in the United States. Jennifer Rosen, M.D., Surgeon at Boston University Medical Center, also noted that 18% of the 1,326 participants in the study reported that their physician did not know about, ask about, or prescribe their CAM use. A total of 83% of the patients in the study had papillary thyroid cancer. The participants averaged 46 years old; 84% were women and 90% were white. The most common forms of CAM were multivitamins (41.8%) and prayer (35.3%). Apart from these two approaches, the five most common CAM mind-body approaches were massage (33.7%), chiropractic (27.9%), yoga (22.3%), meditation (17.8%), and acupuncture (13.6%). The five most common CAM biologic approaches were herbal tea (23.6%), special diets (23.2%), herbal supplements (18.4%), homeopathy (14.7%), and ginger (9.5%). About 7% of the survey respondents reported using no form of CAM. A total of 67.5% of the patients reported using some form of CAM therapy other than prayer and multivitamins during the past 12 months. Participants used CAM mainly to treat symptoms, though 30.9% used CAM as part of their thyroid cancer treatment. “Another interesting finding was that two-thirds of patients felt that their CAM use was helpful, and one-third felt it had no effect, but a significant 1.3% felt that their use actually had a bad effect on their treatment,” Dr. Rosen said. An article about Dr. Rosen’s presentation appeared in the online Endocrine Today on September 16, 2010 http://www.endocrinetoday.com/view.aspx?rid=70379. Dr. Rosen will speak in more detail about the study results at the International Thyroid Cancer Survivors’ Conference on October 15-17, 2010, in Dallas, Texas. RAI Questionnaire Seeks Responses The U.S. House of Representatives Subcommittee on Energy and Environment of the Committee on Energy and Commerce, chaired by Congressman Edward J. Markey, has asked that ThyCa make you aware of their questionnaire regarding whether you've received Radioactive Iodine (I-131) as part of your thyroid cancer care. If you have received I-131, they invite you to complete the following questionnaire as they gather information about patients’ experiences. The questionnaire takes less than 5 minutes to complete. Click here for the click-on link to the questionnaire, plus more information. They hope to have preliminary results of this questionnaire to present at the International Thyroid Cancer Survivors' Conference in Dallas, Texas, October 15-17, 2010. ThyCa is a nonpartisan, nonpolitical organization, and our interest in this questionnaire is in helping people better understand the thyroid cancer treatment experience. Medical Documentary Helps Thyroid Cancer Patients Prepare To Receive Radioactive Iodine Therapy When documentary film producer Nick Isenberg was told that he needed radioactive iodine (I-131) therapy for thyroid cancer, he felt confused and more than a bit scared. So he asked his endocrinologist if there was a video so patients would know what to expect. There wasn't. Thanks to his efforts, there is now. It's "Thyroid Cancer's Magic Bullet.” This 62-minute documentary about differentiated thyroid cancer will have its first showing at the 13th International Thyroid Cancer Survivors’ Conference in Dallas, Texas, October 15-17, 2010. The film answers dozens of questions patients will have, including many they may not know they should ask. The film focuses on what’s important to people receiving radioactive iodine (I-131) and on presenting it so it’s engaging not only to people with thyroid cancer and their family and friends, but also to anyone interested in the most frequently occurring types of thyroid cancer. It’s designed to help patients and caregivers see, hear, and understand what to expect before, during, and after receiving radioactive iodine, and includes experts’ answers to questions. It provides key information about thyroid cancer treatment from physicians and other specialists at a university teaching center. It shows the patient's experience before, during, and after radioiodine, including the challenges of living more than 150 miles from the treating facility and traveling through the mountains in wintertime. It covers both practical and emotional aspects of coping with radioactive iodine, and issues for patients of varied ages. This video also aims to make it easier for doctors, by helping patients feel more comfortable as they see and hear about this phase of thyroid cancer care, and can watch it whenever they want. Click-on options let viewers either watch the entire video at once, or choose from 20-plus segments on topics such as:
Filmmaker Isenberg, who has been a news reporter/photographer for 34 years for both print and TV, asked numerous thyroid cancer survivors what questions they had before their I-131 and what questions weren't answered. He lives in Glenwood Springs, Colorado, and his experience in photography and writing includes travel a few years ago to Mount Everest. He received a large dose of radioactive iodine and stayed in an isolation room in the hospital for 2 days. He said that his biggest challenge in making the film was getting pictures of the inside of the isolation room, because anything he brought in with him had to stay in the room. That meant he’d have to leave his cameras in the room, as well as any videotapes or camera chips. But, he solved the problem. For more information about the documentary and purchasing the DVD, go to www.nickisenberg.com. Conference Program on Web Site, Registration Continues, Walk-In Attendees Welcome On October 15-17, 2010, you are cordially invited to attend the 13th International Thyroid Cancer Survivors’ Conference at the Sheraton Grand Hotel DFW Airport in Irving, Texas, near Dallas. Some highlights:
Learn from experts and tap into the "Power of Peers" this October 15th, 16th, and 17th in Dallas, Texas, as ThyCa: Thyroid Cancer Survivors' Association presents the 13th International Thyroid Cancer Survivors’ Conference of compelling educational sessions with a lineup of renowned thyroid cancer experts. The Conference offers a unique perspective for individuals living with thyroid cancer, as well as for family members or health care professionals looking for ways to best help their loved-ones and their patients by partnering with them on their thyroid cancer journey. Experience the Power of —
Go to our website for details, registration, transportation directions, and information about continuing education credits for nurses. Scholarships to cover the registration are available on request. Walk-in attendees are welcome. Dinner/Auction Will Support Thyroid Cancer Research On Saturday, October 16, 2010, at the Sheraton Grand Hotel DFW Airport in Irving, Texas, we will hold the 9th Annual Saturday Evening Dinner/Auction to raise much-needed funds for thyroid cancer research. This wonderful and inspiring event raises funds for Thyroid Cancer Research. It is also a lot of fun, including a live band, and dancing. Help ThyCa raise funds so we all can continue funding thyroid cancer research—now 8 straight years, and totaling more than $650,000. There’s still time to purchase tickets for this exciting and important event. You can get tickets on the ThyCa web site (www.thyca.org) or by mail. We invite you to bring your friends and neighbors for a night of fun, and to support the cause as well. The cost is $50 per ticket. The web site has the reservation form. Good News About the Investigational Drug Vandetanib for Advanced Medullary Thyroid Cancer In September, AstraZeneca announced that the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) have accepted regulatory submissions for review of the investigational drug vandetanib in the treatment of patients with advanced medullary thyroid cancer (MTC). The FDA also granted priority review status for the new drug application and set a Prescription Drug User Fee Act (PDUFA) action date of January 7, 2011. U.S. Congress Passes Improving Access to Clinical Trials Act In a victory for rare disease patients and families, in September the U.S. House of Representatives passed the Improving Access to Clinical Trials Act (I-ACT). The bill, which passed the Senate August 5, goes now to the White House where the President is expected to sign it. The legislation changes the eligibility requirements for Social Security Supplemental Income (SSI) and Medicaid so that compensation of up to $2,000 for participating in clinical trials won't be considered income in SSI and Medicaid determinations. The National Organization for Rare Disorders reported this news, noting that the legislation will support the development of new therapies by removing a barrier that might keep patients from participating in important research studies. The Links page on ThyCa’s web site has a link to NORD, and ThyCa also participates with NORD in the Rare Diseases Awareness observance. Dr. Oz TV Show, ASCO, Many More Highlight Thyroid Cancer Awareness Month Around the world, organizations and individuals put the spotlight on thyroid cancer during September. Together and individually, we made record efforts to raise awareness of the importance of early detection through neck checks. We’ve helped connect people with support services and potentially lifesaving information, and other free resources. A few more who deserve special thanks for their efforts:
It doesn’t have to end! Help raise awareness year-round. For free Tips on how to help, and free Tools to help you, visit the Raise Awareness Page: http://www.thyca.org/awareness.htm Stand Up To Cancer TV Broadcast Focuses on Need for Research September’s global TV broadcast Stand Up To Cancer underlined both progress in cancer research and the need for cures for everyone. Thank you to ThyCa Los Angeles Support Group volunteers Art Connolly and Diane Grandinetti for representing thyroid cancer and ThyCa, wearing colorful t-shirts featuring the Thyroid Cancer Awareness Magnet design. ITC and More International Activities At the International Thyroid Congress Meeting in Paris, France, in September, Jennifer Rosen, M.D., of Boston University Medical Center presented results of the study of use of complementary and alternative medicine approaches by thyroid cancer patients. The study was conducted in cooperation with ThyCa: Thyroid Cancer Survivors’ Association, Inc. and is reported separately in this newsletter. A presentation by Kate Parnell of the Butterfly Thyroid Cancer Trust of the United Kingdom described additional information about patients collected through ThyCa and patient support organizations in several countries. Some of ThyCa’s medical advisors and event speakers participated in other sessions at the meeting. ThyCa appreciated the invitation to attend this meeting. In further international news, ThyCa continues to communicate to the medical professional community that the ThyCa Thyroid Cancer Research Grants are open to researchers in any country around the world. ThyCa has already awarded grants to researchers in 4 countries in North America and Europe. We all share the key goal of finding cures for all thyroid cancer. ThyCa also mails free materials to patients, caregivers, professionals, and everyone interested, anywhere in the world. Numerous free publications are also downloadable from our web site, in English, Spanish, and French. Our materials, memberships, and newsletters now serve people from 55 countries. ThyCa To Award New Research Grants in 2011 In 2011, for the ninth year in a row, ThyCa: Thyroid Cancer Survivors' Association, Inc. will award new grants for thyroid cancer research, ThyCa Executive Director Gary Bloom has announced. ThyCa will award two new grants in 2011. Each grant will be for 2 years. One grant will support research on follicular-cell-derived thyroid cancer, including papillary, follicular, anaplastic, and variants. The other grant will support research on medullary thyroid cancer. The ThyCa Research grants are open to all researchers and institutions worldwide. An independent expert panel of the American Thyroid Association (ATA) will select the grant recipients. ATA is the professional association of clinicians and researchers concerned with thyroid diseases. ThyCa Participates at The Endocrine Society’s September Meeting At the Clinical Endocrinology Update Meeting of The Endocrine Society, the largest worldwide endocrine professional organization, ThyCa volunteers Joel Amromin and Art Connolly managed the ThyCa booth. Thank you very much to Joel and Art for answering physicians’ questions and giving out materials to professionals for their patients. Flu Season Tips Every year, during the winter months, seasonal Flu or Influenza circulates widely. The flu is a contagious respiratory illness caused by the influenza virus. The flu spreads from person to person when an infected person coughs or sneezes or one touches an object that has the flu virus on it and then touches their eyes, nose or mouth. An example of this can be a door handle, shopping cart, or railing. An infected adult can begin to infect others one day prior to being symptomatic and up to 5 days following the development of symptoms. In light of this, the number one preventive strategy we can all do is to WASH OUR HANDS either with soap and water or with an alcohol based hand rub. In addition, always remember to sneeze or cough in your sleeve or by covering your nose and mouth with a tissue. Then, immediately washing your hands will help further prevent the spread of this virus. Symptoms of the flu can be mild or severe but usually include some or all of the following: fever, headache, dry cough, fatigue, sore throat, runny or stuffy nose, muscle and body aches, nausea, vomiting, and/or diarrhea. The complications associated with the flu can be minimal or severe. These could include bacterial pneumonia, ear infections, sinus infections, dehydration, and worsening of some chronic illnesses. Because of these complications it is recommended that at-risk groups of people as well as health care workers receive the flu vaccine. Currently there are two types of seasonal vaccine: the flu shot, which is an inactivated virus, or the nasal spray flu vaccine, which is derived from a live weakened flu virus that usually does not cause the flu. This nasal spray should be administered only to healthy people. This year’s flu vaccine contains Influenza A, B and H1N1. According to the U.S. Center for Disease Control, the following groups of people should get the seasonal flu vaccine. People who are at high risk for complications from seasonal flu
Health Tip of the Month October is often associated with the raking of leaves, apple cider, festivals, and of course trick–or–treating. For many children, the idea of dressing in costume, going door-to-door, and attending parties is filled with fun and anticipation. At the same time, it is an opportunity for parents to be able to provide nutritious snacks, safety, physical activity, and camaraderie for our children. Below are a few tips for our trick-or treating nights:
Happy and Safe Halloween! Cancer Is Not Funny, But….On the Low Iodine Diet I want chocolate, I want cake, I want cookies that I bake... I want take-out... If you are what you eat, then that explains what I am... I can have fresh veggies, fruit, as well as some meat... Playing a game, I'm having fun with this feed... It's good to laugh! To receive our free online newsletter, plus announcements of ThyCa events and activities, fill out our Guestbook form. To protect each person’s privacy, the mailing list is for the sole use of ThyCa: Thyroid Cancer Survivors' Association, Inc., and its affiliates. ThyCa does not ever sell or give away any contact information. Have You Visited Our Web Site Lately? We’re excited to report that the www.thyca.org web site receives more than 320,000 visits per month —more than 10,000 each day. In both August and September, the web site received more than 14,000 visits each day, for totals of more than 420,000 hits each month — new monthly record totals. Almost every day our volunteer webmasters make new additions or updates. Recent additions include an article on managing side effects of new targeted therapies, web pages for new local support groups and the Conference Program Preview and speaker biographies. A great place to start reading is the Newly Diagnosed section. Here, you’ll find lots of topics to choose from. You’ll learn the basics about each type of thyroid cancer, with details about diagnosis, treatment, and follow-up, and links to further guidelines and resources. On www.thyca.org, more than 650 web pages provide extensive information about all types of thyroid cancer, connections to a broad range of free support services and events, and details about awareness campaigns, as well as fundraising for thyroid cancer research. Free downloadable publications include the Free Low-Iodine Cookbook in English, Spanish, and French, plus dozens of other publications. Thank you very much to the more than 50 thyroid cancer specialists who provide their input and expertise, to Betty Solbjor and Joel Amromin, our webmasters, and to the many dozens of volunteers on ThyCa's Publications and Web Site Teams. Low-Iodine Recipe of the Month Turkey Burgers 3 pounds ground turkey In a large bowl, mix the ground turkey, bread crumbs, onion, egg whites, parsley, garlic, salt, and pepper. Form into 12 patties. Cook the patties in a medium skillet over medium heat, turning once, to an internal temperature of 180 degrees F (85 degrees C). Nicole writes: “I am currently on the low iodine diet and have come across a recipe that I found to be tasty and filling so I am e-mailing it on to share with others. Enjoy! Hope it helps someone!” Thank you, Nicole, for this recipe. It will appear in the next edition of the Free Downloadable Low-Iodine Cookbook. Free and Downloadable Download the new expanded 7th edition of the ThyCa Low-Iodine Cookbook in English for free, with more than 340 favorite recipes from more than 150 generous volunteers. The Cookbook is also available in Spanish and French). Please remember, while you’re welcome to download and print the entire free low-iodine cookbook, you can also print just the pages you need. This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. All the recipes are favorites of some of our ThyCa volunteers, who are sharing them with everyone, to make the low-iodine diet easy and tasty. The recipes are also great for family meals and for potlucks, any time. If you’d like to contribute your favorite recipe or tip, send it to recipes@thyca.org. ThyCa: Thyroid Cancer Survivors’ Association, Inc. is now on Facebook (Group Name: THYCA. Thank you to everyone who’s already become a THYCA Friend or Fan! Send us your messages and suggestions! You’re Invited To Become a Member Help us sustain, strengthen, and extend our services. We invite you to join ThyCa: Thyroid Cancer Survivors’ Association, Inc. Your membership dues will support ThyCa's efforts to reach and serve other survivors and their families around the world. Members receive our quarterly Membership Messenger newsletter. You may join as a 1-year member ($25), 2-year member ($45), or lifetime member ($225). For our secure online Membership Form and our mailed Membership Form, go to our Membership page. Help Support the 2010 Rally for Research Thanks to generous contributions and special fundraising events, ThyCa has awarded new thyroid cancer research grants every year starting in 2003. These grants support our goal of cures for all thyroid cancer and a future free of thyroid cancer. We plan to award new research grants in 2011. You can help support the Rally for Research. For details about the Rally for Research, donation opportunities, special events, Quarters for a Cure, and information about ThyCa’s past and future Research Grants, visit the Rally for Research Page: www.thyca.org/rally.htm. Events Preview
Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors' Association, Inc. Every day, numerous people distribute ThyCa outreach materials to their physicians, making them aware of a resource that can benefit their patients dealing with a thyroid cancer diagnosis. Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach. It only takes a minute to make a secure donation online in support of ThyCa's work (or you are welcome to donate by mail to ThyCa, P.O. Box 1102, Olney, MD 20830-1102), so click here to give. About ThyCa NEWS NOTES Thank you to our writing, editing, and proofreading team for this issue: Leah Guljord, Nicole J., Pat Paillard, Donna Parrish, Barbara Statas, Marie Sullivan, Cherry Wunderlich, and Gary Bloom. Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month. Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at publications@thyca.org. ThyCa: Thyroid Cancer Survivors' Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals. We are dedicated to support, education, and communication for thyroid cancer survivors, their families, and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants. Contact us for free awareness materials and information about our free services and special events. E-mail thyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website. |
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