ThyCa NEWS NOTES - September 201209/2012
In This Issue:
- Spotlight Shines on Thyroid Cancer Awareness Month
- New Free Webinars with Experts: September 12 and September 24
- Latest News about the 15th International Conference, October 19 – 21, 2012
- Dinner/Auction Research Fundraiser Funds Thyroid Cancer; Dr. Mazzaferri To Be Honored
- New Drug Decision Update from the FDA
- Ric Blake Remembered with One-Year Anniversary Gathering
- Raising Awareness: Radio, TV, Facebook, Blogs, Walks, Talks, Displays, More
- What Are the Top 10 Things To Know About Thyroid Cancer?
- Genzyme’s Rare Community Spotlights Thyroid Cancer
- Follow Us on Facebook and Twitter
- Book Explains Cancer Clinical Trials
- Rejoicing Through the Tears
- Low-Iodine Recipe of the Month
- Stay Connected and Informed
- Have You Visited the Web Site Lately?
- Join Us, Become a Member
- Every Day
- About ThyCa News Notes
It’s Thyroid Cancer Awareness Month! Throughout September, survivors, caregivers, and friends everywhere will be urging everyone to “Find It Early.”
Thyroid Cancer Awareness Month shines the spotlight on
- the need for early detection of the fastest increasing cancer in both men and women,
- the need for treatment and long-term follow-up using expert guidelines, plus
- research for better treatments and cures for all thyroid cancer.
You're invited to get involved!
Help the next person “Find It Early,” get free education and support, and connect with others around the world. ThyCa, sponsor of Thyroid Cancer Awareness Month, invites you to become an Honor Roll Partner in raising awareness, now and throughout the year.
Get the facts about thyroid cancer, plus free handouts, tips on how to help, and the calendar of coming events, on our website.
New Free Webinars with Experts: September 12 and September 24
Free! Click here for details and registration
We're excited to invite you to watch and listen to two new Free 1-Hour Thyroid Cancer Webinars with Thyroid Cancer Expert Speakers, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. with CancerCare and the American Thyroid Association as partners.
- Wednesday, September 12 at 1 p.m. ET, 12 p.m. CT. Medullary Thyroid Cancer. Jeffrey Moley, M.D., Thyroid Surgeon, Washington University in St. Louis, Missouri, and ThyCa Medical Advisor, is speaking and answering your questions about Surgery in the Care of Medullary Thyroid Cancer.
- Monday, September 24 at 3 p.m. ET, 2 p.m. CT. Thyrogen. Bryan Haugen, M.D., Endocrinologist, University of Colorado Health Sciences Center, Denver, Colorado; President-Elect, American Thyroid Association, and ThyCa Medical Advisor, is speaking and answering your questions about Thyrogen® (rhTSH), used in connection with testing and treatment for differentiated thyroid cancer (papillary, follicular, and their variants).
Watch and listen free of charge, online from any computer, anywhere in the world. Telephone access is also available. Details will be added here.
Please tell everyone in your networks about these terrific free opportunities to learn.
The Annual International Thyroid Cancer Survivors’ Conference is where experts, survivors, and caregivers come together to:
- Share the latest advances in thyroid cancer treatment, testing, research, and clinical trials
- Learn skills and practical information for coping with thyroid cancer’s many challenges
- Take part in roundtables with survivors and caregivers affected by every type of thyroid cancer as well as every situation, from people being tested or newly diagnosed to people with advanced thyroid cancer and long-term survivors
- Become part of a community of people all dealing with the challenges of a thyroid cancer diagnosis and treatment.
More than 40 distinguished medical professionals are confirmed to speak at the 15th Annual Conference, October 19-21! Many of these experts will lead more than one session.
The complete speaker list is on the web site in the Conference section. We’ll add updates, as well as (late this month or in early October) the program schedule.
We’ll also have sessions with specialists in coping skills and practical issues, as well as numerous roundtable discussions with ThyCa volunteers and participants from collaborating organizations.
Conference Registration is open! Register early for the early-bird discount!
You can register either online, or by mail, for one, two, or all three days. Go to our website, and select the Conferences page, to register.
You’ll also find hotel room reservations, driving directions, airline and car rental discount information, and more. Please note the special hotel sleep room rate ($99) at the Eaglewood Resort & Spa (Meeting site) is only available for reservations made through September 28, 2012. Conference hotel rooms are filling fast, especially for pre-conference days. If the hotel website says that no rooms are available for pre-conference days, contact the Conference Team at email@example.com and we’ll work with the hotel to find a room for you. The Conference section of the web site has more information about hotel rooms.
Looking forward to seeing you at this unique and amazing weekend of learning, support, and friendship!
On Saturday, October 20, 2012, you’re invited to join us at the Eaglewood Resort & Spa in Itasca, Illinois for a wonderful evening of connections, camaraderie, and fundraising for Thyroid Cancer Research. We all share the dream of research for cures for all thyroid cancer.
This year we will honor our dear friend and long-time contributor and ThyCa Medical Advisor Dr. Ernie Mazzaferri.
You’re invited to reserve your seat at the 11th Annual Dinner/Auction for Thyroid Cancer Research by using the online form or downloading the mail in form available on our Conferences page. Tickets are $50 each, and the net proceeds go to the ThyCa Research Funds. If you are unable to attend, you are invited to sponsor a ticket for someone else or help with a donation to the research fund.
You honor us, not only by sharing this important and exciting moment in ThyCa history, but also by your continued interest and participation in helping us make a difference in our world. Thank you!
The U.S. Food and Drug Administration is maintaining its November 29, 2012, action date for deciding whether to approve cabozantinib, a potential treatment for medullary thyroid cancer (MTC), and also decided not to have the drug on its discussion agenda on November 9. Exelixis, Inc. makes this drug.
More information about Medullary Thyroid Cancer, including the MTC E-Mail Support Group, Webinars, and the 2012 Conference speakers on MTC, is available at www.thyca.org, as well as in the free handbookThyroid Cancer Basics.
Early this August, family and friends gathered in New Hampshire to remember Ric Blake, ThyCa Co-Founder and longtime volunteer, who passed away on August 15, 2011. All gathered to dedicate a beautiful granite park bench in New Hampshire, in Ric’s memory.
Then everyone gathered with Diane Blake near the Blake home for refreshments and tributes. The afternoon included a slide show of some of Ric’s artistic photographs of nature, favorite places, and people, plus the video of Ric speaking of his vision for end-of-life support. The video was recorded by a member of Team Ricky, the friends and relatives who helped with Ric’s care and support and who continue to meet monthly.
Also in August, ThyCa announced the first Ric Blake Memorial Thyroid Cancer Research Grant, awarded to a researcher in Sweden, in Ric’s memory and honor. Click here for ThyCa’s tribute to Ric.
People near and far are creating innovative and varied ways to mark Thyroid Cancer Awareness Month throughout September. The theme is “Find It Early,” because, when detected early, thyroid cancer is usually treatable. Thyroid Cancer Awareness Month sponsor ThyCa: Thyroid Cancer Survivors’ Association, Inc. invites everyone to spread the message.
Here are a few of the many events and activities:
September 1st: More than 150 individuals and organizations shared ThyCa’s FacebookAnnouncement on their own Facebook pages. Thank you for spreading their word through your networks around the world!
September 7th: ThyCa will be represented at the Stand Up to Cancer Live Telecast! It's at 8 p.m. ET/7p.m. CT on TV networks. www.standup2cancer.org Thank you, Joel Amromin, ThyCa Los Angele.s Support Group, and Diane Bible, ThyCa South Bay Los Angeles Support Group, for representing ThyCa
September 12, 2012: Free Thyroid Cancer Webinar at 1 p.m. ET/12 p.m. CT with Jeffrey Moley, M.D., Washington University in St. Louis, Missouri, and ThyCa Medical Advisor. Detailson our Webinarspage.
September 12, 2012: Free Thyroid Cancer Expert Panel Program with 5 Speakers in Newark, Delaware. Hosted by the ThyCa Newark, Delaware Support Group.
September 13, 2012: Call-in Radio Show broadcast from New York City with Dr. R. Mack Harrell, a member of the American Association of Clinical Endocrinologists and long-time ThyCa Volunteer Christine Lanotte of New York City.
September 15, 2012: Saturday at 8:30 a.m. in Newtown, Pennsylvania. Thyroid Thunder 5K Run/1 mile walk organized and hosted by Meghan Wright. Rain or Shine. Visitwww.active.com/running/newtown-pa/thyroid-thunder-5k-1mile-walk-2012.
September 17, 2012, and September 24, 2012: at 7 a.m. TV Interview on Thyroid Cancer, with thyroid cancer survivor and R. Mack Harrell, M.D. On Lifetime Channel. Will also be on YouTube.
September 22, 2012: Free Thyroid Disease Forum from 1 - 3 p.m. in Quebec City, Quebec, Canada. Sponsored by American Thyroid Association with co-sponsorship by ThyCa: Thyroid Cancer Survivors’ Association. Details to be added to the Calendar of Events on our website.
September 24, 2012: Free Thyrogen Webinar at 3 p.m. ET with Bryan Haugen, M.D., Endocrinologist, University of Colorado Health Sciences Center, Denver, Colorado and ThyCa Medical Advisor. Register and watch/listen at the ThyCa Webinars page.
September 24, 2012: Radio Broadcast for Thyroid Cancer Awareness Month. The Stupid Cancer Show with two representatives of ThyCa as guests.
September 29, 2012. Pilates and More for a Cure, organized and hosted by Christine Sypien, starting at 10 a.m. at Fitness Fanatics, Great Southern Shopping Center, 1155 Washington Pike, Bridgeville, Pennsylvania 15017. Pilates, Medical Professional Speakers, Door Prizes, Snacks, More! Click here for the flyer with details.
September 2012. The Pink Hair Project and Honor Our Angels Awareness Fundraiser, with Team Thyroid, Chris Prestano and Meredith Petrillo.
Genzyme's Rare Community spotlights thyroid cancer awareness and ThyCa's free services, interviewing Gary Bloom, ThyCa Executive Director! The article, published August 28, is at www.genzymerarecommunity.com/blog.
The Thyroid Examiner, Everyday Health, and more, have published articles about Thyroid Cancer Awareness Month.
New Zealand Thyroid Support, the Hypoparathyroidism Association, and others are linking to Thyroid Cancer Awareness Month, the 15th International Thyroid Cancer Survivors’ Conference, and more, from their web sites.
From Virginia: I would love to pass out free awareness info to the quilt guild I belong to at our next meeting. We have about 100 members. We meet at a public library so any remaining materials would be passed out there as well.
From California: I am currently a senior in high school. My mom is a thyroid cancer survivor. I'd like to help out for the Thyroid Cancer Awareness Month in September. I plan to give out the brochures, the neck check cards and wallet cards to my school community and the neighborhood pharmacies to raise the awareness about thyroid cancer. I'm hoping my effort can raise awareness on the importance of early detection and treatment as well as the need for more thyroid cancer research.
From Michigan: I am a thyroid cancer survivor who is hosting a thyroid cancer awareness walk in September. There will be approximately 60 people attending & I would love to have some information to pass out for this event.
From a Survivor treated in 2012: I currently work at a small school and want to incorporate Thyroid Cancer Awareness month here. I would appreciate any brochures or info that I could pass out to the teachers and staff.
From Texas: I am a school nurse. In my district we have 8 people who have had or are currently battling Thyroid cancer. I would love to request any free materials that we might pass out and share at a local health fair we have going on in Sept. I also want to thank you for a great web site. I was diagnosed with Hurthle Cell and last year our student body donated money to ThyCa at all of our home football games, in my honor.
From North Carolina: I am a former teacher with advanced thyroid cancer. I will be going to two of the schools where I taught for Thyroid Cancer Awareness Month. Since this is also the beginning of the school year when teachers are so busy, the principals have given me permission to talk to the teachers now and pass out materials gradually to refresh their memory. I will be talking to about 140 staff members. I would like brochures and information cards. "THANK YOU.”
From Ontario, Canada: I work at a Family Health Team in Ontario, Canada and am a survivor and would like to order resources to distribute at work in September.
From Florida: I am a thyroid cancer survivor and plan to give a presentation to my company about thyroid issues/cancer. I am requesting 60 copies of brochures and Neck Check Cards.
From California: I have a display set up at the Redlands Public Library. The librarian said he will order the Thyroid Cancer: A Guide for Patients in English and Spanish. I also distributed the information to my family practice doctor. The YMCA said they would post the material on their bulletin board. After Labor Day I plan on taking some material to local hospitals and a few local pharmacies. The Redlands City Council has the proclamation of September as Thyroid Cancer Awareness Month on the Consent Calendar for the September 4th meeting. The Redlands Patch online newspaper said they would do an article. I also forwarded your press release to two other newspapers. Twenty-two years ago when I was diagnosed with Thyroid Cancer there were few resources and no support so I think what you are doing is great.
From Puerto Rico: I was diagnosed with a cancer nodule in 2011. I want to help others to get checked. (Mine was discovered on a routine check up; I didn’t have any symptoms.) Can you send me information? I can use both English and Spanish materials.From Nebraska: I would really like to help spread the word. I can post materials at work, nursing homes, health fairs etc. in and north of Omaha, Nebraska. I might get an article written in the local small town paper too. I am a papillary thyca survivor two years post surgery.
Want to help? Ask us for free materials (or download flyers from our web site), plus tips for spreading the word, and how you and your business, agency, or organization can partner with ThyCa in Thyroid Cancer Awareness Month. Let us know what you’re doing to heighten awareness. Share your ideas with others.
Visit the Thyroid Cancer Awareness Month page for news, announcements, free handouts and tips, and the opportunity to partner with ThyCa in this important event.
Thank you for helping others!
The new free handout is here: www.thyca.org/download/document/374/topten.pdf. And more free handouts on the Thyroid Cancer Awareness Month page. Or ask ThyCa to mail you free Neck Check Cards, Wallet Cards, and more. Thanks very much to everyone who's helping raise awareness!
On August 28, 2012, Genzyme's Rare Community put the spotlight on thyroid cancer awareness and ThyCa's free services, interviewing Gary Bloom, ThyCa Executive Director. The article is atwww.genzymerarecommunity.com/blog for August 28.
“Cancer Clinical Trials: A Commonsense Guide to Experimental Cancer Therapies and Clinical Trials” was written by Tomasz W. Beer, M.D., of Oregon Health and Science University, Portland, Oregon, and Larry Axmaker, Ed.D., psychologist, teacher, and writer, to give patients and caregivers a general overview of clinical trials for all kinds of cancers as well as the factors to consider when determining whether a clinical trial is a good option for their situation. This 166-page book was published in 2012 by DiaMedica Publishing. ThyCa has added it to our Links list bibliography.
I am just now reaching my five-year mark of being a thyroid cancer survivor on the 27th of August.
Before my cancer diagnosis, life was good, but the dreaded news shattered my, otherwise-comfortable lifestyle, and turned my own world upside down. I had 8 nodules on my thyroid gland with one tumor measuring over 2 centimeters, with it being likely that the cancer had invaded the outside margin of my lymph nodes. I had to go through an MRI, ultrasound, biopsy, pre-op tests, a total thyroidectomy, the low iodine diet, and radioactive iodine therapy to treat the cancer. I have to take thyroid hormone replacement daily for the rest of my life, not to mention all of the follow-up tests that become a way of life for anyone dealing with any type of cancer.
Since my cancer diagnosis, my life has changed completely. It was a long arduous journey that only became easier with time. My faith in God pulled me through, which led me to write my book, "Rejoicing Through the Tears." I want to reach out to people going through any type of a cancer diagnosis and tell them that a cancer diagnosis doesn't always mean life is over; in fact, it can become an opportunity to make life more meaningful than ever.
Since my treatment, I’m fortunate that I have never felt better in my life (I wish everyone was as fortunate in that regard). I have gone on to work in an assisted living facility, where I can encourage others every day. I will be going to Mackinac Island, MI in September for a book signing and I will be participating in the 8-mile walk around the island.
As long as I have breath, I don't want to waste one day. I am passionate about getting the word out to encourage everyone I can to never give up, but to fight the good fight and never lose hope.
There are some things we can all do each and every day to make our lives more meaningful. We need to find joy in simple things, by having a good attitude and developing a healthy lifestyle, by eating healthy and exercising regularly. Of course, we all must keep all of those follow up appointments to keep our health on track. We must also surround ourselves with the love of family and friends. It is so important to enjoy life and to celebrate each day!
While I am reaching out to people with all types of cancer, I have a special place in my heart for those with thyroid cancer. I will always be grateful for ThyCa for all of the help the many volunteers have been while I have been writing my book. I appreciate their support and permission to use information from www.thyca.org to include in my book. I am also thankful to ThyCa and all of the contributors for the Low Iodine Cookbook. It's such a help to so many (including me) during a very difficult time.
I wish everyone good health and happiness.
Cinnamon Raisin Bread
This is for the bread machine
1 cup water
1 1/2 Tablespoons olive oil
3 cups flour (I used bread flour)
3 Tablespoons sugar
1 1/2 teaspoons noniodized salt
1 teaspoon cinnamon
2 1/2 teaspoons yeast
3/4 cups raisins -
Add all the ingredients in order listed except the raisins, keeping yeast and salt separate. I make a small well in the middle of the flour and put the yeast there. When you hear the "add ingredients" beep, add the raisins. This was cooked in my 1 1/2 lb bread machine.
Thank you, Christi, for contributing this recipe and tips. We will include them in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.
Free and Downloadable
Download the 7th edition of the 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:
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.
To contribute your favorite recipe or tip, send it to firstname.lastname@example.org.
Patients, caregivers, and health care professionals in 96 countries are now receiving ThyCa’s free education, support services, and mailed materials.
Our web site has information and downloadable materials in English, Chinese, French, Japanese, and Spanish.
Free Newsletter and Guestbook
We invite you to join our worldwide network. We want to help you stay connected and informed. Our mission is to be there for every person affected by thyroid cancer.
By signing up on ThyCa’s free Guestbook, you’ll receive the latest news about thyroid cancer, new free publications, events, and more.
If you haven’t already signed up, we invite you to sign up today.
Every Day: Free Webinars
Listen, and learn from experts, anywhere you are in the world. Seven important thyroid cancer topics, plus 2 new webinars in September. All 9 webinars are available free at www.thyca.org/news/webinars/
Every Week: Meet and Learn
You’re invited to free Thyroid Cancer Support Group Meetings in dozens of locations. The web pages with details for all the groups are here: www.thyca.org/sg/. If you don’t see a group listed near you, find out how ThyCa can help you start a new ThyCa Support Group. Just e-mail to us at email@example.com.
- October 5, 2012. Madera, California. Cancer Legal Rights Conference. Free. Sponsored by the Cancer Legal Resource Center. ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to partner with CLRC in this event.
- October 6, 2012. Redondo Beach, California. Thyroid Cancer Seminar: Ask a Doctor. Free. Hosted by the ThyCa South Bay L.A. Support Group. For more information, contact Cheryl Moulton at 310-316-3077 or e-mail to firstname.lastname@example.org.
- • October 13, 2012. Fresno, California. Thyroid Cancer Seminar with Physician Speakers. Free. Hosted by the ThyCa Fresno Thyroid Cancer Support Group. For details, call Facilitator Anjali Kapoor-Davis at 559-260-1870 or e-mail to email@example.com.
- • October 19-21, 2012. The 15th International Thyroid Cancer Survivors’ Conference, Chicago, Illinois, with dozens of distinguished physicians and other specialists. Scholarships on request to cover the registration fee. Speaker list, registration, more, on our Conferences page.
For more events, details, and updates, visit our Calendar of Events: www.thyca.org/support/calendar/.
We’re excited to report that the www.thyca.org web site receives more than 400,000 visits per month —more than 14,000 each day. Almost every day our volunteer webmasters make new additions or updates.
More than 650 web pages provide extensive information about all types of thyroid cancer, links to a broad range of free support services, and details about awareness campaigns, as well as fundraising for thyroid cancer research.
The web site has information in English, Chinese, French, Japanese, and Spanish. Recent additions include new handouts (Three Things To Tell Your Friends about Thyroid Cancer, Thyroid Cancer is not a “good” cancer, and the Top Ten Things To Know About Thyroid Cancer); new webinars, new events, and more.
Free downloadable publications include the Free Low-Iodine Cookbook in English, Spanish, and French, plus the Free 50-page handbook Thyroid Cancer Basics in English and Chinese, and dozens more downloadable publications.
Thank you very much to the more than 50 thyroid cancer specialists who provide their input and expertise, to our webmasters Betty Solbjor and Joel Amromin, and to the dozens of volunteers on ThyCa's Publications and Web Site Teams.
Help us sustain, strengthen, and extend our services. We invite you to become a member of 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 Membership Messenger newsletter.
Membership is open to everyone worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225). For our online Membership Form and our mailed Membership Form, go to our Membership page.
Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors' Association, Inc. Your generous support, in the time you give and in financial contributions, is what makes it possible to sustain, strengthen, and expand our services and outreach.
It only takes a minute to volunteer your time by e-mailing to firstname.lastname@example.org or to make a donation online in support of ThyCa's work (or you are welcome to donate by mail to ThyCa, P.O. Box 964, Chesterfield, MO 63006-0964), so click here to give.
Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at email@example.com.
Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.
Thank you to our writing, editing, and proofreading team for this issue: Brenda George, Leah Guljord, Christi H., Pat Paillard, Barb StatasCherry Wunderlich, and Gary Bloom.
The information in this newsletter is intended for educational purposes only. It is not intended, nor should it be interpreted, as medical advice or directions of any kind. Readers are advised to consult their own medical doctor(s) for all matters involving their health and medical care.
ThyCa: Thyroid Cancer Survivors' Association, Inc. is a non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals. Contact us for free awareness materials and information about our free services and special events. E-mail to firstname.lastname@example.org, call toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.