ThyCa NEWS NOTES - January 2011
01/2011In This Issue:
- Survey – If You Received Radioactive Iodine
- ThyCa Launches New Online Support Community
- Thyroid Surgery Notes from the Conference
- Endocrinologist and Social Worker To Speak on February 2 in Sacramento, California
- Endocrinologist To Speak on February 8 in Reno, Nevada
- Surgeon To Speak on February 12 in Madison, Wisconsin
- Spring Workshops Being Planned
- ThyCa Expands 2011 Research Grant Program, Makes 3rd Grant Available
- FDA Extends Deadline for Decision on Vandetanib
- FDA Grants Orphan Drug Designation to XL184
- Have You Taken Part in the Surgery Survey?
- Welcome to the Newest In-Person Local Support Groups
- From the E-Mail Inbox
- Low-Iodine Recipe of the Month
- Follow ThyCa on Facebook and Twitter
- Support the Rally for Research
- Join Us, Become a Member
- Every Day
- About ThyCa NEWS NOTES
Survey – If You Received Radioactive Iodine
If you have received radioactive iodine (I-131) to treat your thyroid cancer, you're invited to complete the online Salivary Gland Survey.
Or, if you are a guardian of a minor or another individual who received an I-131 therapy, please complete this survey for that individual.
ThyCa: Thyroid Cancer Survivors' Association, Inc. is helping ThyCa Medical Advisors Douglas Van Nostrand, M.D., and Brian McIver, M.B., Ph.D., as well as the other researchers who are conducting this study.
The purpose of this survey is to identify whether or not you had side effects from your last I-131 therapy and to help identify factors that may have increased, decreased, or prevented these side effects.
More than 870 people have participated in this survey so far. Your information will remain anonymous and confidential.
This is an opportunity for us to help others and ourselves. Together, we are helping to improve knowledge and care for people with thyroid cancer.
ThyCa Launches New Online Support Community
ThyCa: Thyroid Cancer Survivors' Association, Inc. has launched a new online support community for people coping with thyroid cancer, as well as their families, friends, and caregivers.
ThyCa created this new community in partnership with Inspire, a company that works with health and wellness organizations to provide safe, online health and wellness communities.
Members of the community (http://thyca.inspire.com) can participate in moderated discussion groups and post personal journals. Registration is free. Upon joining, members will have complete control of their privacy options and can communicate with others in a safe, secure environment.
"We initiated this new online community to benefit people with thyroid cancer, wherever they live, as well as caregivers and friends, through Inspire's resources," said Gary Bloom, Executive Director of ThyCa.
"We are proud to partner with ThyCa and do our part to support everyone involved in thyroid cancer. We expect this community will be a trusted, thriving online space," said Brian Loew, CEO of Inspire, which partners with nonprofits to create safe, moderated online communities organized by condition for patients to share information and to support each other.
The new community is open to people with any type of thyroid cancer, as well as caregivers and friends. Participants can take part in any of a dozen discussion groups. They can also set up their own individual profile pages and privacy settings.
ThyCa is a non-profit organization of thyroid cancer survivors, family members, and health care professionals. ThyCa is dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as thyroid cancer research fundraising and research grants.
For more information about the new online community, e-mail to outreach@thyca.org.
Thyroid Surgery Notes from Sessions at the 2010 Conference
Neck Ultrasounds prior to surgery: Ultrasound of neck should be done by someone who is very familiar with looking for abnormal lymph nodes. It is important to look at all zones in the neck.
- For medullary thyroid cancer, the definitive treatment is still surgery. For differentiated thyroid cancer, surgery is the first step in treatment.
- Surgical approaches vary from country to country.
- It’s important to support the neck during surgery to prevent cervical spine injury.
- Among the many factors the head/neck surgeon considers is the importance of preserving the blood supply to parathyroids. The incidence of hypoparathyroidism is about 3%; in some places, it’s 15-20%
- The nerves in the neck, not the arteries, are the difficult structures for the surgeon to consider. Thyroid surgery needs a meticulous surgeon.
- The ATA Guidelines have detailed recommendations about ultrasound before surgery, surgery, neck dissection, and related topics, and are linked on our website.
- The number of surgeries a surgeon does is the best predictor of the rate of complications. A study of 5,000 neck operations found that experienced surgeons had significantly less complications. Rate of surgical complications goes up dramatically with less experience. The majority of thyroidectomies are done by surgeons who do only one per year. Experienced means doing more than 100 thyroid surgeries per year.
- With "re-do" surgeries, all complication risks go up. With additional surgeries in the same patient, greater care needs to be taken.
- An easy way to check a thyroid surgeon's qualifications in the United States is by checking the website for the American Association of Endocrine Surgeons. Look under "Member Search" for a geographic list. Also check if the surgeon is a member of American Thyroid Association.
Endocrinologist and Social Worker To Speak on February 2 in Sacramento, California
On Wednesday, February 2, 2011, from 5 p.m. to 6 p.m. you’re invited to hear Dr. Alison Semrad, Endocrinologist, and John Linder, Social Worker at the University of California Davis Medical Center. The free program will take place at UC Davis Medical Center Room PSSB-1015 (on the first floor by the elevator), 2315 Stockton Boulevard, Sacramento, California.
This free event is organized and hosted by the ThyCa Sacramento Valley Support Group. Karen Meeks Johnson is the group’s volunteer facilitator. More details are available at www.thyca.org/sg/ca_sacramento/.
Endocrinologist To Speak on February 8 in Reno, Nevada
On Tuesday, February 8, 2011, from 12 noon until 1:30 p.m. Dr. Lisa Abbott, Endocrinologist, will speak and answer questions about thyroid cancer care at Renown Regional Medical Center (Sierra Tower, First Floor, Cafeteria Board Room),1155 Mill Street, Reno, Nevada.
This free event is organized and hosted by the ThyCa Reno Support Group. Marta Brown and Marion Hammond are the group’s volunteer co-facilitators. For more information, visitwww.thyca.org/sg/nv_reno/.
Surgeon To Speak on February 12 in Madison, Wisconsin
On Saturday, February 12, 2011, from 2:00 p.m. until 3:30 p.m. Dr. Herbert Chen, Surgeon, will speak and answer questions about thyroid cancer care at University of Wisconsin Hospitals and Clinics, Wisconsin Institute of Medical Research (WIMR) Building, Room 5001A 5th Floor Conference Room, 600 Highland Avenue, Madison, Wisconsin.
This free event is organized and hosted by the ThyCa Madison Support Group. Timothy Lau is the group’s volunteer facilitator. For more information, visit www.thyca.org/sg/wi_madison/.
Spring Workshops Being Planned
Watch the ThyCa web site for news about these and more free one-day thyroid cancer workshops, with physician speakers.
- Saturday, April 9, 2011. New Jersey. Free 3rd Thyroid Cancer Survivors’ Workshop with Physician Speakers. Sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc. and The Wellness Community.
- Saturday, April 16, 2011. Missouri. Free 7th Thyroid Cancer Survivors’ Workshop with Physician Speakers. Sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc.
- Spring date to be announced. Maryland/Virginia near DC. Free 10th Mid-Atlantic Thyroid Cancer Survivors’ Workshop with physician speakers. Sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc.
- More Spring Workshops to be scheduled. Visit our website.
ThyCa Expands 2011 Research Grant Program, Makes 3rd Grant Available
Proposals Due by January 31, 2011
In 2011, for the ninth year in a row, ThyCa: Thyroid Cancer Survivors' Association, Inc. will award new grants for thyroid cancer research, open to researchers worldwide.
Thanks to the generosity of all of our donors, ThyCa’s grants program is being expanded, and up to three new research projects will be funded in 2011 based on the decision of the selection committee. Each grant will be for 2 years. 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. The Call for Proposals and eligibility requirements are available on the ATA web site (www.thyroid.org). The deadline for submission of a proposal summary to the ATA is January 31, 2011.
Past ThyCa research grants have been awarded to researchers in 11 medical centers in France, Germany, Switzerland, and the United States.
ThyCa invites everyone to join us in our quest to find cures for all thyroid cancer.
FDA Extends Deadline for Decision on Vandetanib
The U.S. Food and Drug Administration has extended its review of vandetanib, a new drug for advanced medullary thyroid cancer care, by 3 months (until April 7, 2011). We'll keep you posted when there's further news. Thank you to the more than 500 people who wrote to the FDA by its November deadline for public input about the New Drug Application for vandetanib, produced by AstraZeneca and tested in clinical trials for advanced medullary thyroid cancer.
FDA Grants Orphan Drug Designation to XL184
The FDA has granted orphan drug designation to XL184, made by Exelixis, for treatment of follicular, medullary, and anaplastic thyroid carcinoma, and metastatic or locally advanced papillary thyroid cancer. Exelixis also plans to release results of the phase 3 trial of the drug in patients with medullary thyroid cancer, and possibly to file a New Drug Application for the drug by the end of 2011. In addition, the drug has been given the name cabozantinib by the U.S. and World Health Organization agencies that determine names for new drugs.
Have You Taken Part in the Surgery Survey?
Help increase knowledge about thyroid surgery and the voice. More than 5,200 people have participated in this important survey to date. The research team led by ThyCa Medical Advisor David Myssiorek, M.D., Otolaryngologist, is studying the experiences of patients whose voices stayed the same after their surgery as well as the frequency and types of voice changes that were experienced.
Please share your experience and help increase knowledge about thyroid surgery. It takes just a few minutes.
Welcome to the Newest In-Person Local Support Groups
Welcome to the newest Thyroid Cancer Support Groups, in Greenville, North Carolina, and Colorado's Western Slopes. Thank you very much to volunteers Alexa Landsman and Nick Isenberg for starting these groups. The Greenville Group will meet monthly while the Western Slopes Group is an e-mail and phone contact group at this time. For the complete list of ThyCa local support groups, their volunteer facilitators, and contact information and meeting dates, visit: http://www.thyca.org/sg/.
ThyCa has helped start face-to-face support groups across the United States and in Canada, Costa Rica, and Philippines.
Find out whether there is a ThyCa Support Group near you: www.thyca.org/sg/.
Don't see a support group near you? Find out how you can help start a new group. Just e-mailsupport_coord@thyca.org.
From Massachusetts:
I am requesting a free packet of educational materials for my daughter recently diagnosed with thyroid cancer. I have downloaded a number of materials from your wonderfully helpful website, but this packet may be more inclusive. Better prepared than unprepared....Thank you in advance and thank you for providing such a useful website.
From a Nuclear Medicine Department in Wisconsin:
Could you send your patient pamphlets "One of the many faces of Thyroid Cancer" for our hospital practice.From Minnesota:
I 'm fortunate to have found the thyca.org website and I have spent many hours there reading and educating myself about thyroid cancer.
From Texas:
Your association and website has been recommended to me by fellow survivors and by my physician. The information is an enormous help. I have reviewed a number of the pages already and have printed out the cookbook. I see there is a local chapter in Dallas and will contact them after my Iodine 131 treatment. Thanks for all you and your organization do!
From Indiana:
I’m a co-captain in the Relay For Life and we would like to have your packets to hand out as awareness during this event. If you would please send us about 25 at least that would be greatly appreciated.
From New Jersey:
I am so grateful to this website and would appreciate the packet for new patients be mailed to me.
From an Endocrinologist’s Office:
I would like to order 100 each of your brochures titled:
1. "One of the many faces of Thyroid Cancer".
2. “Do you have thyroid cancer?”
Low-Iodine Recipe of the Month
Contributed by Jacki E.
Low Iodine Ligurian Pasta
Ingredients:
A. Pesto Ingredients
2 cups fresh basil leaves, packed
1/2 cup extra virgin olive oil
3 medium sized garlic cloves, minced
Juice of 1/2 lemon (optional)
1/3 cup unsalted pine nuts or walnuts (optional)
Non-iodized salt and freshly ground black pepper to taste
Makes 1 cup pesto
B. hole Wheat Pasta of your choice
C. 2 potatoes, peeled
D. 1/2 cup green beans (fresh if possible)
1. Prepare your homemade pesto: In your food processor, chop the basil, garlic, olive oil, and lemon juice. After a few pulses, add the nuts. The nuts are optional. Chop until smooth.
2. Peel the potatoes and cut into cubes. Boil until soft.
3. Boil the Pasta.
4. Steam the green beans.
Mix together and enjoy!
(Note: Liguria is a region of Italy. It’s also known as the Italian Riviera. It stretches from the border with France along the southern and eastern Mediterranean coastline.)
Thank you, Jacki, for contributing your recipe. We will include it in the next edition of the ThyCa FREE Downloadable Low-Iodine Cookbook.
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 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.
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Support the 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’re invited to 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.
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.
Membership is open to people worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225).
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 is what makes it possible to sustain, strengthen, and expand our services and outreach.
It only takes a minute 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.
Copyright (c) 2011 ThyCa: Thyroid Cancer Survivors' Association, Inc.
Thank you to our writing, editing, and proofreading team for this issue: Jacki E., Leah Guljord, Pat Paillard, Mary Seemueller, Barbara Statas, 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.
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 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-mailthyca@thyca.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.