Survey Seeks Your Input on RAI and the Salivary Glands

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 (RAI), 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 several side effects from your last I-131therapy and to help identify factors that may have increased, decreased, or prevented these side effects.

Please complete this online survey form. 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.

On Wednesday, February 2, 2011, from 5 p.m. to 6 p.m., Dr. Alison Semrad, Endocrinologist, and John Linder, Social Worker at the University of California Davis Medical Center, will speak and answer questions related to thyroid cancer care and patient and family experiences.

The free program will take place UC Davis Medical Center Room PSSB-1015 (on the first floor by the elevator), 2315 Stockton Blvd., 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. For more details, click here.

In This Issue:

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.

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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.

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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.

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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/.

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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/.

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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/.

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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.

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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.

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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.

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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.

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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.

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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.

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From the E-Mail Inbox

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?”

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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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Follow ThyCa on Facebook

http://www.facebook.com/pages/THYCA/231492537404?ref=mf

Follow ThyCa on Twitter, at http://twitter.com/ThyCaInc.

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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.

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Join Us, 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.

Membership is open to people worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225).

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Every Day

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.

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About ThyCa NEWS NOTES

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.

Contents:

Proposals Due by January 31, 2011 for ThyCa’s 2011 Thyroid Cancer Research Grants, Open to Researchers Worldwide

In 2011, for the 9th year in a row, ThyCa: Thyroid Cancer Survivors’ Association, Inc. will award new grants for thyroid cancer research.

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 in 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 specializing in thyroid diseases.

The Call for Proposals and eligibility requirements will be available on the ATA web site (www.thyroid.org). The deadline for submission of a proposal summary to the ATA is January 31, 2011. The ATA Research Committee will rank proposals according to their scientific merit. ATA will notify the authors of selected proposals by early March and will invite them to submit complete grant applications.

The ThyCa grants, begun in 2003, are the first-ever thyroid cancer research grants to be funded entirely by thyroid cancer patients, caregivers, and friends.

ThyCa has awarded its grants to researchers at the following institutions:

  • Cochin Institut, Paris, France
  • Harvard Medical School, Boston, Massachusetts
  • Johns Hopkins University School of Medicine, Baltimore, Maryland
  • Memorial Sloan-Kettering Cancer Center, New York, New York
  • Ohio State University, Columbus, Ohio, and Medical University of Gdansk, Poland
  • Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois
  • University Hospital Basel, Basel, Switzerland
  • University Hospital Duesseldorf, Duesseldorf, Germany
  • University of California Los Angeles (UCLA)/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California
  • University of Illinois at Chicago.
  • University of Texas M.D. Anderson Cancer Center, Houston, Texas

ThyCa has two Research Funds. One fund supports research of follicular-cell-derived thyroid cancer, including papillary, follicular, anaplastic, and variants. The other research fund supports research of medullary thyroid cancer.

Find out more about the ThyCa Research Funds and annual Rally for Research.

ThyCa invites everyone to join us in our quest to find better treatments, and a cure for all thyroid cancer.

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Thyrogen® Restrictions Ended

Genzyme Corporation reported on November 24 that it no longer has restrictions on marketing and distributing Thyrogen® in the United States, after completing terms of the consent decree with the U.S. Food and Drug Administration. Genzyme has transferred all its Thyrogen® fill/finish operations for the US market into a facility with Hospira, a third-party company. As a result of this action, Genzyme is no longer required to include a letter of medical necessity with Thyrogen® shipments to distributors. Thyrogen® is a prescription recombinant TSH given to many patients with differentiated thyroid cancer when preparing for radioiodine treatment, radioiodine whole-body scan, Thyroglobulin testing, or other testing as part of their thyroid cancer management.

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Letters to the FDA Support Vandetanib

Vandetanib is the first-ever targeted therapy for thyroid cancer management to be presented to the U.S. Food and Drug Administration (FDA) for approval. Tested in the United States for Medullary Thyroid Cancer (MTC), vandetanib (Zactima) is also being tested in Europe for treating advanced differentiated thyroid cancer (papillary and follicular) that has not responded to radioactive iodine.

More than 500 thyroid cancer survivors, family members and friends wrote to the FDA, to ThyCa for its presentation, or to both, in response to the FDA’s invitation for public comment by November 16. Here are a few excerpts:

From Michigan:

“I am a patient with Stage IV medullary thyroid cancer (MTC) with metastases in my neck, mediastinum, liver, and lungs. I understand that the only proven treatment for MTC is surgery and that no treatment currently exists for MTC that has spread to distant organs… I support the approval of Zactima (vandetanib) for first ever non-surgical treatment of MTC. With this approval, all MTC patients may have a drug available that can combat this disease.”

From Texas:

“I support the FDA approval of vandetanib because of the remarkable difference it has made in my dear friend’s quality of life. At one point she could barely talk for over 5 minutes before becoming out of breath. She weighed in at about 95 pounds and was very frail. It hurt to see this once vivacious woman, gaunt and in pain. Apparently this drug is a miracle because she is once again at a healthy weight and loving life with her family. I have seen the change with my own eyes and love what I see. Please consider this my plea for approval of this drug so that others may reap the benefits that she has had.”

From a parent:

“I am the mother of a special 17-year-old daughter who is battling with sporadic medullary thyroid cancer. She had an extensive surgery. There is currently no systemic cure for this disease. I support the approval of Zactima (vandetanib). I’m very scared for my daughter since her cancer had already spread even beyond the lymph nodes to where she had to have some nerves removed. …. She has some cancer on her trachea. She has a spot in the mediastinum area as well as in the deep right area of her neck that the surgeons say they can’t go to – and we have excellent doctors. I realize that this cancer doesn’t have the high numbers of some other cancers, but it is devastating still. Please help us have a treatment for our daughter with help of Zactima.”

From North Carolina:

“I have been living with medullary thyroid cancer since 1999. There is currently no systemic cure for this disease, only surgery. Over the past 5 years, research has begun to produce clinical trial drugs that are showing promise in treating medullary thyroid cancer. Not everyone who needs treatment qualifies, or has the ability to participate in a clinical trial. That is why the promise of a newly approved drug for medullary thyroid cancer patients is so exciting. More ’meddies‘ may have the ability to try a systemic treatment, and perhaps stabilize or reduce their cancer. I have been fortunate to meet a number of medullary survivors over the years, and I have known many people who died because there were no successful treatments available. For many others, side effects of medullary thyroid cancer, such as diarrhea or bone pain from metastases, limit their ability to function or work. Some rely on serious drugs to reduce their pain. I know several ‘meddies‘ who have participated/are participating in the vandetanib (Zactima) clinical trials. They have told me how the drug relieved their pain, lessened their requirement for narcotic drugs, allowed them to gain weight, and stabilized the progress of their disease. I know it’s not a perfect drug, and doesn’t work for all. But it has shown significant progress and it holds promise for many who are waiting. I support the approval of vandetanib for the first ever non-surgical treatment of medullary thyroid cancer. Thank you.”

From a patient:

“I have Medullary Thyroid cancer. I was diagnosed at a stage 3, and just this past year I have had side effects of my cancer show through with daily life, due to my high ’calcitonin’ numbers. I’m a mom of 3 children 14, 10, and 7. I need this drug approved for them, and my husband. My children need me; my husband needs me. My children are already too young to know about cancer, but that is the card we’ve all been dealt. If this approval of Zactima can save lives, and stop young children from losing their parents, please, please approve this drug. My children need me…”

From Ontario, Canada:

“When I was diagnosed with Medullary Thyroid Cancer (MTC), the only treatment was surgery. Unfortunately, surgery is not always a realistic treatment if the MTC has metastasized. Candidly, the low number of patients diagnosed with MTC does not make research and clinical trials into potential MTC drugs commercially viable. Notwithstanding these statistics, AstraZeneca has pursued the development of vandetanib over the last five or six years and has achieved remarkable results in terms of partial response and stable disease findings in the patients participating in the clinical trials. Other types of cancer respond to chemotherapy; however, chemotherapy has not been an effective MTC treatment. At last, there is the opportunity for an effective treatment other than surgery. I urge the approval of vandetanib as there may be precious few other opportunities for MTC patients.”

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ThyCa Participates at FDA Hearing on Vandetanib

On December 2, 2010, AstraZeneca presented vandetanib to the U.S Food and Drug Administration (FDA), Oncologic Drugs Advisory Committee (ODAC) in advance of submitting vandetanib for its New Drug Application. This was very exciting, as vandetanib is the first targeted therapy agent to be presented to the FDA in conjunction with any type of Thyroid Cancer management. Previously, the European Medicines Agency (EMA) and the FDA both accepted earlier regulatory submissions for review of vandetanib. ThyCa: Thyroid Cancer Survivors’ Association, Inc. participated at the FDA hearing with both oral and written information in support of vandetanib. Gary Bloom, ThyCa Executive Director, gave ThyCa’s presentation. Four medullary thyroid cancer survivors also spoke movingly of their experiences.

The formal presentations provided detailed findings and analysis of the clinical trials of vandetanib, presented by Robert Gagel, M.D., of University of Texas M.D. Anderson Cancer Center, presenter at numerous ThyCa meetings, and ThyCa Medical Advisor, and Gilbert Daniels, M.D., of Massachusetts General Hospital, who also has spoken at many ThyCa events.

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FDA Committee Recommends Approval of Vandetanib

On December 2, the Oncologic Drugs Advisory Committee of the U.S. Food and Drug Administration unanimously supported vandetanib for medullary thyroid cancer patients with progressing disease. The FDA will make its official decision between now and January 7th. This is exciting news for all thyroid cancer patients, because FDA will be more aware of the need for targeted therapy drugs for all types of thyroid cancer.

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Treatments and Clinical Trials for Advanced Metastatic Differentiated Thyroid Cancer:

Notes from Conference 2010

  • 10-15% of patients developed advanced disease that is resistant to radioactive iodine (RAI).
  • Because of research advances, “it’s a whole new world” in treating advanced disease.
  • RAI-refractory disease means at least 1 lesion without RAI uptake, or else uptake but progression within 1 year following RAI treatment.
  • Systemic therapies should be used in these situations, and others
  • growth of tumors over the past 12 months despite RAI
  • large metastases that may compromise organ function
  • The patient needs to be healthy enough to undergo the treatment.
  • What type of physician should manage treatment? Medical oncologists have the most experience in using targeted agents and managing side effects (toxicity). Success is not just access to a drug; help in managing toxicity is important. Find someone you trust; then do what they say.
  • Treatment possibilities include (a) chemotherapy such as doxorubicin (the only FDA-approved drug for metastatic thyroid cancer), paclitaxel, and cisplatin, or targeted therapies such as Vandetanib (New Drug Application presented to the FDA on December 2, 2010), XL-184, Axtinib, Pazopanib, Sorafenib, Suntinib, and others.
  • ATA Guidelines recommend maintaining TSH Suppression in patients with advanced differentiated thyroid cancer (serum TSH below 0.1 mU/L) indefinitely unless there are specific contraindications.

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Surgery Survey Receives Over 5,000 Responses

More than 5,000 people have responded to the Thyroid Surgery Survey posted on ThyCa’s web site. The survey goal is to understand surgery and the voice, to improve care and help prevent voice problems. The topic is “Patients’ Voices After Thyroid Cancer Surgery: Whether Voices Stay the Same, or Change, and How.” Research team leader is David Myssiorek, M.D., Otolaryngologist, New York University Clinical Cancer Center, New York, NY, and Medical Advisor to ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The research team 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.

Add your experience and increase knowledge about thyroid surgery.

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Introducing ThyCa’s Volunteer Coordinator

The friendly e-mail or call you receive when you contact ThyCa about volunteering comes from Michael Dubrow, ThyCa Volunteer Coordinator. Michael contacts each new ThyCa volunteer to get acquainted, explore volunteering possibilities, and help the new volunteer find the best match for the volunteer’s talents and availability. Then, he introduces the new volunteer to the coordinator of the committee or program in which the volunteer plans to serve.

“The more you become involved with helping others, the more meaningful your life becomes,” Michael says.

Michael is also the facilitator of the ThyCa Central New Jersey Support Group, which meets each month at the Robert Wood Johnson Hospital in Hamilton, NJ. He is also a Person-To-Person Network volunteer, giving one-to-one peer support to others. At ThyCa conferences, he has led many roundtable discussions on numerous topics. Michael’s key strengths are that he’s a wonderful listener, and he wants to help people.

A graduate of Monmouth University, Michael was a staff member for Mercer County Board of Social Service for nearly 30 years, including serving as senior case manager in the intake department. Diagnosed with thyroid cancer in December 2005, he has been given the “all clear.” He and Linda have been married for 31 years, and they have two daughters, Beth and Rachel.

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ThyCa Again Accepted into Combined Federal Campaign (CFC)
ThyCa’s CFC # is 11675
Funds Raised Will Provide Education, Support, Resources and Research

ThyCa has again been accepted into the world’s largest workplace giving campaign.

Federal civilian, postal, and military employees are able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC). This federal employees’ charitable giving campaign raises millions of dollars each year for thousands of nonprofits providing health and human services throughout the world.

This wonderful support helps ThyCa sustain and strengthen services and outreach and to fund thyroid cancer research.

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New Online Thyroid Cancer Support Community Opens on Inspire

You’re cordially invited to join our newest free online community—our collaboration with the Inspire online community.

This new thyroid cancer online community offers several benefits— choices of several discussion and support groups, plus the opportunity to create and share your individual online profile page, and more.

To find out more, and to become part of the thyroid cancer support community on Inspire, click here.

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ThyCa Receives Grant from AstraZeneca

We are pleased to announce unrestricted educational grant funding to ThyCa from AstraZeneca in support of our operations, year-round educational services and outreach, and the annual International Thyroid Cancer Survivors’ Conference. We greatly appreciate this support.

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Honoring Our Ten-Year Volunteers

More than 50 wonderful people have been ThyCa volunteers for 10 years or more. Some have volunteered for 15 years. In future newsletters, we will introduce these dedicated volunteers. We offer a special thank you to all ThyCa volunteers, both new and long-time. Together, we are making positive differences in the lives and well-being of others coping with thyroid cancer.

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Free Patient Information Packets Go Around the World

We mail free thyroid cancer information packets to people with thyroid cancer, and their caregivers, around the world. To receive the free packet, e-mail your name and complete mailing address to thyca@thyca.org. For more details, click here.

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Bayer/Onyx Grant Received

Thank you to Bayer/Onyx for the unrestricted educational grant to ThyCa in support of our education and outreach programs. We are most grateful for this funding to help sustain and strengthen our free services and resources for everyone affected by thyroid cancer.

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Have You Visited Our Web Site Lately?

ThyCa’s web site www.thyca.org receives more than 350,000 visits per month — over 10,000 each day. Almost every day our volunteer webmasters make new additions or updates.

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.

Dozens of free downloadable publications include the Free Low-Iodine Cookbook in English, Spanish, and French. A Chinese language translation is also in progress.

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.

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My StoryBy Sue Hollingsworth

Excerpted from Sue’s Vandetanib Presentation to the U.S. Food and Drug Administration on December 2, 2010

My Medullary thyroid cancer symptoms started about 25 years ago…but I wasn’t diagnosed until 2003. When my husband and I told our 9-year-old daughter, we pointed out it is often a slow-growing disease. However, we both knew I’d had it for at least 20 years. In August, 2003, I had an 11-hour surgery performed by 2 surgeons, which included a total thyroidectomy.

Because of the cancer’s pervasiveness & as the pain increased, I felt I needed to do something. I tried targeted radioactive injections in Switzerland and another trial. Nothing helped and my health continued to deteriorate while the pain increased. My breathing became taxed as more tumors appeared in the pleura, spine and ribs. Finally, two lobes of my right lung collapsed. I had to start taking pain medication although I had an enormous fear of becoming addicted to pain meds.

By 2007, the pain was so severe that a pain pump was surgically implanted in my abdomen but complications with a spinal leak and replacement of the catheter further stressed my body. I weighed less than 90 pounds and I had to go to the emergency room a few times just for fluids. I was extremely lethargic and ready to give up. I knew I was running out of time and I felt that I might not be able to hold on another year.

Because of a ThyCa support group on Yahoo, I learned about “vandetanib”. It seemed to have wonderful effects for many who were on the trial. As soon as I was able, I entered the trial. When I enrolled, my weight was still below 90 pounds, my pain was very high and I was taking all kinds of pain medication. I had stopped driving and needed help getting around; needing wheelchair assistance in airports. I had many respiratory infections and had to have my lungs drained frequently.

Within just one month of being on VANDETANIB, my severe and newest pains had completely ceased. Within just a couple of months, I discontinued all of my oral pain medication and started reducing the dose in the pain pump. I continued having the medicine in the pain pump reduced until it now contains saline…I am completely off pain medications.

My tumors have shrunk and some have calcified and my lungs have not had to be drained in a very long time. My calcitonin has gone from between 58,000-60,000 to approximately 5,000. I am back in the gym exercising, I’ve watched my daughter turn 16 and enjoy watching her soccer games again. I’m even looking for a job! None of this would be possible if it had not been for the grace of God and vandetanib.

I wholeheartedly request the approval of vandetanib so that others may have another chance at life, like I have.

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Low-Iodine Recipe of the MonthContributed by Lily W. of California

Pita Bread

2 cups flour
1 cup whole wheat flour
1 1/2 teaspoons non-iodized salt
1 Tablespoon honey
2 teaspoons yeast (or 1 packet)
1 1/4 cup water, roughly at room temperature
2-3 Tablespoons olive oil

Mix the yeast in with the flour, non-iodized salt, and sugar in mixer bowl with paddle attachment. Add the olive oil and 1 1/4 cup water and mix until dough forms a ball. Remove the paddle attachment and replace it with the dough hook; knead the mix for 8 minutes. If you don’t have a heavy-duty mixer, this can be both mixed by hand and kneaded for 10 minutes.

Place the dough in a bowl that has been lightly coated with oil. Cover the dough with oil. Cover the bowl with plastic wrap or a damp kitchen towel and set it aside to rise until it has doubled in size, for approximately 90 minutes.

Punch the dough down and divide it into 8 pieces. Roll each piece into a ball, cover the balls with a damp kitchen towel, and let them rest for 20 minutes. On a floured surface, roll the balls out into 8 inch circles and ¼ inch in thickness.

Place a cookie sheet upside down in the oven and preheat the oven to 425 degrees F. Place circles (try dropping them “rise” side up versus “rolled” side up onto the hot cookie sheet, cooking two at a time. Bake until puffy, about 3-4 minutes.

These will not brown much (like the store-bought ones) but are delicious & a great bread option. If they don’t puff enough to split; use them like flatbread.

Makes 8 pitas.

Focaccia Variation: Use the same recipe and prepare through the first rise. Instead of dividing the dough, spread the dough on a lightly greased pan and brush with olive oil. You can sprinkle with rosemary or chopped garlic or onions. Cover and let the dough rise for 20 minutes. Preheat the oven to 425 degrees F and bake for 15 minutes or until lightly brown.

Thank you, Lily, for contributing your recipe. We will include your recipe and many others in the next edition of the ThyCa FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

Download the new expanded 7th edition of the Low-Iodine Cookbook in English for free, with more than 340 favorite recipes from more than 150 generous volunteersf.

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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Follow ThyCa on Facebook and Twitter

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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.

Membership is open to people 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, click here.

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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.

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.

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Every Day

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 1102, Olney, MD 20830-1102), so click here to give.

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About ThyCa NEWS NOTES
Copyright (c) 2010 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue: Leah Guljord, Sue Hollingsworth, Pat Paillard, Barbara Statas, Lily W., Jo Walker, 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-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.

This site maintains current information about thyroid cancer and support services available to people at any stage of testing, treatment, or lifelong monitoring for thyroid cancer, as well as their caregivers.  This site also serves as a resource for anyone interested in thyroid cancer survivors’ issues.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an all-volunteer, non-profit 501(c)(3) organization 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.

Proposals Due by January 31, 2011; Grants Open to Researchers Worldwide

In 2011, for the ninth year in a row, ThyCa: Thyroid Cancer Survivors’ Association, Inc. will award new grants for thyroid cancer research.

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 in 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 specializing in thyroid diseases.

The Call for Proposals and eligibility requirements will be available on the ATA web site (www.thyroid.org). The deadline for submission of a proposal summary to the ATA is January 31, 2011. The ATA Research Committee will rank proposals according to their scientific merit. ATA will notify the authors of selected proposals by early March and will invite them to submit complete grant applications.

The ThyCa grants, begun in 2003, are the first-ever thyroid cancer research grants to be funded entirely by thyroid cancer patients, caregivers, and friends.

ThyCa has awarded its grants to researchers at the following institutions:

  • Cochin Institut, Paris, France
  • Harvard Medical School, Boston, Massachusetts
  • Johns Hopkins University School of Medicine, Baltimore, Maryland
  • Ohio State University, Columbus, Ohio and Medical University of Gdansk, Poland
  • Memorial Sloan-Kettering Cancer Center, New York, New York
  • Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois
  • University Hospital Basel, Basel, Switzerland
  • University Hospital Duesseldorf, Duesseldorf, Germany
  • University of California Los Angeles (UCLA)/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California
  • University of Illinois at Chicago
  • University of Texas M.D. Anderson Cancer Center, Houston, Texas

ThyCa has two Research Funds. One fund supports research of follicular-cell-derived thyroid cancer, including papillary, follicular, anaplastic, and variants. The other research fund supports research of medullary thyroid cancer.

To find out more about the ThyCa Research Funds and annual Rally for Research, visit http://www.thyca.org/researchfund.htm.

ThyCa invites everyone to join us in our quest to find a cure for all thyroid cancer.

Contents

Progress Reported on New Drug Application for Vandetanib

On December 2, 2010, AstraZeneca is presenting Vandetanib to the U.S Food and Drug Administration (FDA) for its New Drug Application. This is very exciting, as Vandetanib is the first targeted therapy agent to be presented to the FDA in conjunction with Thyroid Cancer management. Previously, the European Medicines Agency (EMA) and the FDA both accepted earlier regulatory submissions for review of Vandetanib.

The FDA Oncologic Drugs Advisory Committee also notes that the FDA encourages participation from all public stakeholders in its decision-making processes. Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee. They may send submissions to the FDA contact person (see below) on or before November 16, 2010.

Those desiring to make formal oral presentations should notify the contact person and also, on or before November 8, 2010, submit a brief statement of the general nature of the evidence or arguments they wish to present, as well as the names and addresses of proposed participants, and an indication of the approximate time requested for their presentation.

Time for each presentation may be limited. If more ask to speak than can be reasonably accommodated during the scheduled open public hearing session, FDA may conduct a lottery to determine the speakers for the scheduled open public hearing session. By November 9, 2010, the FDA contact person will notify interested persons regarding their request to speak.

Contact Person:

Nicole Vesely
Center for Drug Evaluation and Research, Food and Drug Administration
10903 New Hampshire Avenue
Building 31, Room 2417
Silver Spring, MD 20993-0002
Telephone: 301-796-9001
Fax: 301-847-8533
Email: Nicole.vesely@fda.hhs.gov

If you’re interested in providing information for inclusion in a ThyCa presentation, either because you’re unable to attend, or are planning to attend, but are unable to present for personal reasons, please send your information to publications@thyca.org. We will collect your submission, and include it in a ThyCa presentation.

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Safety Procedures After RAI Focus of ThyCa and NRC Meetings, Congressional Questionnaire, and News Media

Stay in the hospital, or go home immediately, or go to a hotel after receiving radioactive iodine — this topic received widespread attention during October, including

  • A session plus informal discussions on October 15 at the International Thyroid Cancer Survivors’ Conference. The session featured a discussion among Peter Crane, Esq., ThyCa Volunteer, Jim Luehman, Deputy Director Division of Materials Safety and State Agreements, U.S. Nuclear Regulatory Commission, and the thyroid cancer survivors and caregivers attending the session. The topic was “Issues in Preparing for a Radioactive Iodine (RAI) Scan or Treatment: Inpatient or Outpatient, Ensuring the Safety of Family Members and Others, Handling the Post-treatment Phase at Home, and Dealing With Insurance Issues.”
  • A questionnaire developed by a U.S. Congressional committee, posted on ThyCa’s web site, received more than 1,000 responses in a week’s time, included in Congressman Markey’s subsequent report.
  • A U.S. Nuclear Regulatory Commission (NRC) public meeting on October 20, in which, at the invitation of the NRC, ThyCa Executive Director Gary Bloom presented ThyCa information and perspective in a slide show and oral presentation, to be posted on ThyCa’s web site.
  • A joint statement on October 20th on Radioactive Precautions Following Radioactive Iodine Therapy, from the American Thyroid Association (ATA), The Endocrine Society (TES), Society of Nuclear Medicine (SNM),and American Association of Clinical Endocrinologists (AACE).
  • An article in the New York Times focusing on NRC policies and hospital procedures and featuring ThyCa volunteer Ann Maddox of North Carolina and her story of going to a hotel after receiving RAI.
  • Other media coverage and discussions among medical professionals and patients in ThyCa support groups.

We will add links to this information to www.thyca.org as well as more information as it becomes available.

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New Global Shortage of Thyrogen® Through Mid-November

In late October it was announced to ThyCa by the American Thyroid Association (ATA, www.thyroid.org) that Genzyme Corporation (Cambridge, MA), currently under a consent decree with the U.S. Food and Drug Administration (FDA) regarding manufacturing issues of several products including Thyrogen®, is experiencing a new delay in its product release.

This delay will affect the supply of Thyrogen® both in the U.S. and globally such that it is unlikely that Thyrogen® will be available for use starting immediately. Health care providers and patients should therefore plan accordingly. The duration of the shortage is uncertain; however, the current best estimate is that it will last through mid-November. The American Thyroid Association recommended that it may be advisable to not schedule use of Thyrogen® until product is confirmed to be available through the professional’s normal method of obtaining Thyrogen®. Additional information will be provided as it becomes available.

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ThyCa Now on Twitter

ThyCa is now on Twitter, at ThyCaInc. Soon ThyCa’s home page will have a link to Twitter. Thank you very much to Mary Catherine Peterman, Outreach Volunteer, for coordinating this new outreach pathway for ThyCa.

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Annual Conference a Big Success

The 13th Annual Thyroid Cancer Survivors’ Conference topped all previous conferences in its reach, with people coming from 40 states, DC, Canada, Hong Kong, and United Kingdom, including thyroid cancer survivors from children to seniors and every age group in between, plus caregivers and friends.

The three days featured more than 100 informative and supportive sessions. More than 50 sessions focused on the latest research and treatment advances. Speakers included 37 distinguished medical professionals from leading centers and the numerous specialties involved in thyroid cancer. Nurses attending received continuing education credits, offered for the 4th year in a row at the conference.

We were also honored to receive the expertise of 3 attorneys, plus numerous specialists in coping skills and complementary approaches, as well as roundtables with survivors and caregivers affected by every type of thyroid cancer—papillary, follicular, medullary, anaplastic, and variants.

Wow! What a Great Conference!
By Pat Paillard

ThyCa did it again!

New people remarked that they were “taken under the wing” of those who have been there before and felt very welcomed.

Those who had attended previous conferences were happy to see their extended family again.

Everyone complimented the speakers and the opportunities to learn in depth from such a varied group of dedicated experts from so many specialties and outstanding thyroid cancer treatment and research centers.

The sessions helped make us informed patients by having so many knowledgeable, patient, and friendly physicians plus other medical specialists. All gave us greater insights into all aspects of thyroid cancer and all topics related to it. You can learn something new every year at the International Thyroid Cancer Survivors’ Conference.

We also enjoyed the tasty food. And to top it all off, on Saturday night we had a live band and dancing until midnight, open to everyone free of charge! What a special treat!

All of the fun, caring, sharing and knowledge also helped to support thyroid cancer research! So, thirteen was a very lucky number for all of us and for ThyCa. It was only unlucky if you missed this conference. However, we have notes and handouts from sessions and are working to add them to www.thyca.org, so everyone will have access to them.

Let’s do it all again next year in Los Angeles!

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Thyroid Hormone Suppression Therapy: Conference Session Notes

Notes from Conference Session 331, Joshua Klopper, M.D., Endocrinologist, University of Colorado School of Medicine

  • Generic versus brand name? Branded (consistent) therapy is important for thyroid cancer management.
  • Initial thyroid hormone suppression in patients with differentiated thyroid cancer (papillary, follicular, and their variants). American Thyroid Association Guidelines Recommendation 40. The guidelines recommend initial TSH suppression to below 0.1 mU/L for high-risk and intermediate-risk patients, and between 0.1 and 0.5 MU/L (at or slightly below the lower limit of normal) for low risk patients, including those who have not had remnant ablation with radioactive iodine.
  • Long-term TSH goals in ATA Guidelines Recommendation 49 are below 0.1 mU/L indefinitely for patients with persistent disease unless there are specific contraindications. For patients free of disease clinically and biochemically, but who started with high-risk disease, the suggested goal is 0.1 – 0.5 mU/L for 5-10 years. For those free of disease, especially those at low risk of recurrence and those who did not have remnant ablation and have undetectable Thyroglobulin and normal neck ultrasound, the recommendation is to keep the TSH within the low normal range (0.3 – 2 mU/L).
  • Data gaps exist regarding what the goals should be for TSH for aggressive presentations of Stage I and Stage II disease.

Dr. Klopper also gave a helpful overview of research regarding TSH suppression and the bones and heart. ThyCa plans to add further information from this and other conference sessions to the web site and in future newsletters.

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Praise for New Video/DVD for Thyroid Cancer Patients Preparing To Receive RAI

At this year’s conference we were given the privilege of the premiere showing of “Thyroid Cancer’s Magic Bullet: The Prep, The Pill, The Post.” This new video/DVD is a 62-minute documentary by Nick Isenberg, who is a filmmaker and thyroid cancer survivor.

This film takes you on the journey with physicians’ visits and discussions about thyroid cancer care and radioactive iodine, preparing to receive RAI, the Radioactive Iodine treatment, and procedures after receiving the “dose.” It lets patients and caregivers see, hear, and understand what to expect and how to prepare, giving the perspectives of patients, physicians, and other professionals as it tells the story. Conference attendees praised the film highly. For more information about the video/DVD and its availability, read the article in the October News Notes or visit nickisenberg.com.

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Awareness Campaigns Continue Following Record-Setting Thyroid Cancer Awareness Month

This year’s Worldwide Thyroid Cancer Awareness Month set new records of participation and outreach. Thank you very much to everyone who helped support the crucial goals of:

– early detection for all,

– treatment according to expert guidelines,

– lifelong monitoring,

– connections to free support services and education, and

– research for cures for all thyroid cancer.

Thank you also to all the individual volunteers and collaborating organizations who both took part in Thyroid Cancer Awareness Month and are continuing to raise awareness as part of the year-round awareness campaigns.

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Dinner/Auction Raises More Than $38,000 for Thyroid Cancer Research

The 9th Annual Dinner/Auction Fundraiser was a big success, raising more than $38,000 for thyroid cancer research. Many thanks to our wonderful supporters through your donations of auction items, your bids on these items, and your help with planning and running this wonderful event.

Special thanks to Trish Allen of Texas, Anaplastic thyroid cancer survivor, and Phil Doetch of California, who created the Million Steps for Bob campaign in memory of his friend Bob Dubcich, for your inspiring talks and appeal for more thyroid cancer research. Thank you also to the attendees, including one medical professional, who responded to the spontaneous Somersaults Challenge ($200 donated for research for each somersault up to 10) and in just a few minutes raised more than $2,000 for research.

This wonderful support helps ThyCa continue to fund thyroid cancer research—now 8 straight years, 14 different grants (some 1 year, and some 2-year grants), and totaling more than $650,000. ThyCa plans to award more new research grants in 2011.

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Volunteer Raises Awareness of Neck Checks at Cancer Screening Day

Gloria Keller, 46-year survivor of thyroid cancer, handled ThyCa’s exhibit table at the Cancer Education and Screening Day at Holy Cross Hospital in Silver Spring, Maryland, on October 2nd. She gave out AACE Neck Check cards, Fine Needle Aspiration Booklets in English and Spanish by Yolanda Oertel, M.D., ThyCa Medical Advisor, Awareness Brochures with Catherine Bell, and other materials. During the day hundreds of attendees learn about thyroid cancer and the importance of neck checks. Thank you, Gloria, for being a ThyCa volunteer for the past 10 years.

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ThyCa Exhibits at Physicians’ CEU Meeting of The Endocrine Society

The Endocrine Society’s CEU Meeting for Physicians in Los Angeles, California, included a ThyCa exhibit. Joel Amromin and Art Connolly of the ThyCa Los Angeles Support Group handed out materials and answered physicians’ questions about ThyCa’s free services and resources for patients, caregivers, professionals, and the public.

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From the E-Mail Inbox

From Tennessee… “My 11 year old daughter was diagnosed with thyroid cancer…I would like it if you could send a backpack to her. Your website has been very helpful to us in the last few months.”

From Nevada… “Our cancer institute is running low in our Library on copies of: ”One of the many faces of Thyroid Cancer” with Catherine Bell on the cover. Can you please send 20-30 more to replenish our shelves? Thank you very much.”

From New Jersey… “I was just diagnosed with Thyroid Cancer in August and had surgery in October. My Thyroid, one parathyroid and 45 lymph nodes were removed… If you can send me any information for myself as well as my children that would be great. Thank you for this very informative website.”

From Missouri… “I am a nurse at the County Health Department. Each month we do a short presentation about a different health topic at the four senior centers in our county. In January, I chose “Thyroid Awareness” as our topic. I was wondering if you had any materials available to give to the clients. We usually have around 120 people (total for the four senior centers). Thanks so much!”

From Pennsylvania… “I recently requested some pamphlets to distribute information regarding thyroid cancer to my co-workers at my school. I have received the neck check cards and I truly appreciate you sending them to me. They are a great source of information, and so I was wondering if I could have more to distribute to the faculty at both schools that I work in. My daughter was diagnosed with thyroid cancer this summer and I would really like to make my co-workers aware of the incidence of thyroid cancer and thyroid conditions so that they will be more vigilant in being checked by their physicians and checking themselves. I would need about 140 more cards.”

From a California thyroid cancer survivor after attending the conference …. “a HUGE THANK YOU for an incredible weekend. This was my first conference (my papillary diagnosis and surgery was earlier this year) — and I am so so so grateful for the experience I had this past weekend. I like to think that I am a pretty active patient in all aspects of my medical care – certainly as it relates to my history of Hashimoto’s and most recently my cancer diagnosis — and by most standards, I am that active and self-educated patient. But I learned SO MUCH this weekend — and I am so happy I made the decision to attend. I am so thankful to all the volunteers and ThyCa organization leaders for making this possible and to the doctors and medical professionals and experts that gave their time to help us patients seeking support and knowledge in managing our disease. I am truly overwhelmed by the overwhelming generosity of the medical professionals that contributed this weekend — it is inspiring to know that there are indeed M.D.s out there that are so committed to engaging us in this way. …Many many many thanks. I am so encouraged and feel really empowered in going forward in managing the next steps of my recovery.”

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Our Free Guestbook

To receive our free online newsletter, plus announcements of ThyCa events and activities, fill out ourGuestbook 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 never sells or gives away any contact information.

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Have You Visited Our Web Site Lately?

We’re excited to report that the www.thyca.org web site receives more than 350,000 visits per month —more than 10,000 each day. And, during each of the last 3 months, it has received more than 400,000 visits each day.

Almost every day our volunteer webmasters make new additions or updates. 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. A Chinese language translation is also in progress.

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.

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Low-Iodine Recipe of the MonthContributed by Cathy Bernardi

Harvest Rice Stuffing

INGREDIENTS

1/2 Cup Basmati rice
1 pack of Herb Ox no sodium beef broth (or one cup of liquid beef broth if not on LID)
1 Cup of water (eliminate if using the liquid beef broth)
olive oil, enough to coat the cooking pans
3-4 cloves of garlic, chopped
1 small onion, chopped
2 stalks of celery, chopped
1 small carrot, chopped
3-4 button mushrooms, chopped, approximately 1/3 Cup chopped
1 small apple, chopped – I suggest one that is more sweet than tart.
1 teaspoon non-iodized salt, or to taste (Salt may need to be adjusted as needed, especially if using broth containing sodium)
black pepper, to taste
1 teaspoon ground sage
1/2 teaspoons poultry seasoning
1-2 Tablespoons no-salt Italian Seasoning, adjust to taste (check the label, most brands do not contain salt)
pinch of cinnamon
1/4 Cup dried cranberries
1/4 Cup raisins
1/4 Cup chopped toasted pecans, not salted

DIRECTIONS

Chop the following ingredients and set aside in a large bowl: garlic, onion, celery, carrot, mushrooms, and apple.

Heat oil in a small saucepan. Add rice and a pinch of salt and sauté over medium-high heat until rice starts to turn a light golden brown. While rice is sautéing add no sodium beef broth to 1 cup of hot water, stir to dissolve (skip this step if using liquid broth).

Once rice is golden mix the broth into the pan and bring back to a simmer. Cover and simmer on medium-low heat for approximately 15 minutes, until rice is tender and broth is absorbed.

While rice is cooking, heat oil in a large sauté pan over medium heat and add the chopped garlic, onions, celery, carrot, mushrooms, and apple. Sauté ingredients for a couple of minutes until the vegetables and apple start to tenderize. To the sauté pan add salt, black pepper, sage, poultry seasoning, Italian seasoning and cinnamon.

Continue to cook until vegetables are tender. Remove from heat. Once the rice is cooked stir the vegetable mixture in to the rice, then add the dried cranberries, raisins, and chopped pecans. Enjoy!

Serving suggestions:

Cool stuffing mix, mix with ground beef and/or ground pork, and stuff Acorn Squash. Bake in the oven at 425 degrees for approximately 45 minutes or until squash is tender and beef cooked through. I par-bake my squash first for approximately 20-25 minutes so they get really tender.

This would make a great stuffing for Thanksgiving turkey, whole baked chicken, stuffed baked chicken breasts, pork chops or pork loin, or pork roast.

Makes approximately 4-5 cups of stuffing,

Cathy writes, “My husband and I recently took a day trip to Apple Hill in Placerville, California, to celebrate our anniversary. While there we purchased an Acorn Squash at one of the farms. Not knowing exactly how I wanted to prepare the squash, but knowing we wanted it for dinner last night, I came up with this stuffing recipe. Seasonings may need to be adjusted a bit to your taste preference. I tend to cook often without measuring, so all seasoning measurements are approximate.

“This makes about enough to stuff a small turkey, two chickens, or two large Acorn Squash halves, more if you mix ground meat in with the stuffing mix. This recipe fits the guidelines for a thyroid cancer patient’s low-iodine diet when using the original ingredients as suggested. For those individuals not needing to watch the iodine in their diet you can use the ingredients in the parentheses.

“It is an original recipe that I created, as I am currently on a low iodine diet preparing for my thyroid cancer radiation treatment this week. It is a delicious recipe for the fall and winter. I think it may be especially helpful to any dieters who are faced with being on the low-iodine diet during the Thanksgiving or winter holidays. In my opinion the taste and smell of this dish just says, “holiday!”

“I cannot tell you how much I appreciate having your cookbook available to me….Your cookbook has saved my sanity and helped me to not feel deprived of good, tasty foods during this time.”

Thank you, Cathy, for contributing your recipe. We will include it in the next edition of the ThyCa FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

Download the new expanded 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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Serving People in 55 Countries

ThyCa is proud to report that our services currently are reaching people in 55 countries around the world. Thank you to everyone who is helping to connect people worldwide with ThyCa’s free education, support services, and special events.

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Follow ThyCa on Facebook

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!

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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.

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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, click here.

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Every Day

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).

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About ThyCa NEWS NOTES

Copyright (c) 2010 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue: Cathy Bernardi, Leah Guljord, Pat Paillard, 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.

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.

ThyCa posted this questionnaire in October 2010. It received over 1,000 responses in a week’s time. The questionnaire has closed.

Dear Friend,

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 we 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 your experience. The questionnaire takes less than 5 minutes to complete. Now closed.

ThyCa is a nonpartisan, nonpolitical organization, and our interest in this questionnaire is in helping people better understand the thyroid cancer treatment experience.

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.

As noted in the cover letter of this questionnaire, your information will remain confidential unless you choose to share it for purposes of being contacted about your specific experience.

If you have already completed the questionnaire, you will receive a thank you rather than being able to participate again. So, please click on the link, and take part if you haven’t already.

Thank you in advance for your participation. Together, we are helping to educate people about our thyroid cancer experience.

Wishing you well with your health,

ThyCa: Thyroid Cancer Survivors’ Association, Inc.

P.S. If you have questions, please e-mail outreach@thyca.org.

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.

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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.

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Medical Documentary Helps Thyroid Cancer Patients Prepare To Receive Radioactive Iodine Therapy
Premiere Showing at the 13th International Thyroid Cancer Survivors’ Conference in October

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:

  • The Prep, The Pill, and the Post.
  • What it’s like being in an isolation room.
  • Handling isolation at home.
  • How doctors figured out that I-131 could be used to fight thyroid cancer.
  • How to avoid public restrooms when you’re radioactive.
  • Side effects and how to reduce them.
  • How to tell your kids that you won’t be able to interact with them for many days.
  • Kids who have thyroid cancer.
  • Support groups.
  • How your being radioactive might affect your pets.
  • Checking your own thyroid for nodules.
  • Medical tax deductions for medical expenses.

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.

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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:

  • Program Schedule Preview now on on our website
  • The latest information about every type of thyroid cancer
  • Over 70 Speakers, including 37 medical specialists, 12 other specialists, and over 25 roundtable facilitators including survivors and caregivers affected by every type of thyroid cancer
  • More than 100 session choices
  • Nurses’ continuing education credits available
  • Details and advance registration on our website
  • Walk-in attendees are welcome
  • Scholarships to cover the registration are available on request

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 —

  • KNOWLEDGE. Through Educational Sessions led by 37 distinguished medical specialists.
  • SKILLS and DISCOVERY. Through numerous sessions that offer tools and coping strategies to survivors, volunteers, advocates, and family members.
  • CONNECTION, ENCOURAGEMENT, and INSPIRATION. Through Peer Roundtables where peers share ideas and personal strategies based on their experiences in a variety of coping-focused topics.
  • COMMUNITY. Through a conference weekend where you can connect with old and new friends to network and share stories, wellness tips, and hope.

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.

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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.

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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.

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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.

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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:

  • Dr. Oz for your CBS TV Feature on Neck Checks
  • Coping with Cancer Magazine for featuring Thyroid Cancer Awareness Month on your Home Page
  • American Association of Clinical Endocrinologists for creating the AACE Neck Check Cards (available free from ThyCa, year-round) and for the feature article in Power of Prevention
  • American Society for Clinical Oncology (ASCO) for the feature on Thyroid Cancer
  • American Thyroid Association for ongoing recognition of Thyroid Cancer Awareness Month
  • DearThyroid.org for its web page on Thyroid Cancer Awareness Month
  • About Thyroid.com for articles during Thyroid Cancer Awareness Month
  • The City Council of Fresno, California, for the Proclamation for Thyroid Cancer Awareness Month, and recognition of the new ThyCa Fresno Support Group
  • Drexel University Department of Endocrinology for their exhibit at a Women’s Health Fair
  • ThyCa Local Support Groups and Facilitators for outreach and awareness efforts
  • Hundreds more dedicated volunteers around the globe who set up displays, raised awareness in their workplaces, schools, and community organizations, and gave out Awareness flyers, brochures, Neck Check cards, wristbands, pins, and bracelets.
  • nd more. Watch our web site for more news about 2010’s Thyroid Cancer Awareness Month campaigns.

It doesn’t have to end! Help raise awareness year-round.

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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.

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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.

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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.

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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.

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Flu Season TipsBy Marie Sullivan, R.N., M.S.N, RCCN

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

  • Children 6 months through 18 years of age
  • Pregnant women
  • People 50 years of age or older
  • People of any age with certain chronic medical conditions (discuss with your physician)
  • People who live in nursing homes and other long-term care facilities
  • People who live with or care for those at high risk for complications

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Health Tip of the MonthBy Marie Sullivan, R.N., M.S.N, RCCN

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:

H – Healthy snacks to include trail mix, pretzels, fruits, and vegetables.
A – Always fasten reflective tape to costume or bags to help drivers see you.
L – Look both ways before crossing the street. Always stay within crosswalks.
L – Light any luminaries or pumpkins away from walkways and steps.
O – Only travel with trusted adults. Never go into homes unattended. Never trick-or-treat alone.
W –Wear clothing that is well fitted in order to avoid tripping and falling.
E – Eat packaged candy only after it’s inspected by an adult.
E – Enjoy parties and activities that allow for physical activity for your child.
N – Never keep makeup or costume paint on your skin while sleeping. Remove before bedtime.

Happy and Safe Halloween!

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Cancer Is Not Funny, But….On the Low Iodine Dietby Donna Parrish

I want chocolate, I want cake, I want cookies that I bake…
I want milk, I want eggs;
Is anybody listening to my begs?…
Low iodine has made a whiner out of me…
What I wouldn’t do for cheese…
No shellfish, no sea fish, no butter, no whipped cream….
No yogurt, no ice cream…
Am I in a bad dream?…

I want take-out…
I want to cheat…
And it’d be great to have processed meat….
Some bologna…
Some wieners…
Some bacon…
Some ham…

If you are what you eat, then that explains what I am…
(That’s why I run from the J. C. Potter truck)…
Although on a low-iodine diet, I might avoid a tummy tuck…

I can have fresh veggies, fruit, as well as some meat…
There are all kinds of recipes; there’s no need to cheat…
I’ve become creative with the “cannots” and “cans”…
And decided to count the “allows,” and not the “bans”…

Playing a game, I’m having fun with this feed…
And giving you all something humorous to read.

It’s good to laugh!

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Our Free Guestbook

To receive our free online newsletter, plus announcements of ThyCa events and activities, fill out ourGuestbook 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.

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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.

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Low-Iodine Recipe of the MonthContributed by Nicole J.

Turkey Burgers

3 pounds ground turkey
1/4 cup seasoned bread crumbs (make yourself from low-iodine bread, or be sure they’re low-iodine)
1/4 cup finely diced onion
2 egg whites, lightly beaten
1/4 cup chopped fresh parsley
1 clove garlic, peeled and minced
1 teaspoon non-iodized salt
1/4 teaspoon ground black pepper

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.

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Follow ThyCa on Facebook

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!

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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.

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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.

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Events Preview

  • Every Day: Thyroid Cancer Awareness Activities by volunteers around the world, to promote early detection, care according to expert standards, connections with free education and support services, and research for cures for all thyroid cancer.
  • Every Month. ThyCa’s Thyroid Cancer Support Group Meetings in Your Community. Several new support groups begin in September
  • Friday, October 8, 2010, Los Angeles, California, at UCLA Medical Center. Cancer-Related Legal Issues. Free educational conference sponsored by the Cancer Legal Resource Center.
  • The 13th International Thyroid Cancer Survivors’ Conference
    October 15-17, 2010 in Dallas, Texas
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
  • The 9th Annual Dinner/Auction Fundraiser for Thyroid Cancer Research.
    October 16, 2009 in Dallas, Texas
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
  • Graves’ Disease Foundation Conference, October 22-24, 2010, in San Diego, California. Details atwww.ngdf.org
  • Coming in 2011—Spring Workshops, Fall Conference, Seminars and Local Support Group Meetings throughout the year, and Worldwide Thyroid Cancer Awareness Month in September.

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Every Day…

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.

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About ThyCa NEWS NOTES
Copyright (c) 2010 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

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.

Thyroid Cancer Survivors Urge Neck Checks for Early Detection
Free Tools and Tips Available at www.thyca.org, Sponsor of Awareness Month

Thyroid cancer is one of the few cancers continuing to increase in incidence, with an anticipated record of about 44,670 people newly diagnosed in the United States this year and more than 200,000 people expected to be newly diagnosed worldwide. It’s also a cancer that affects people of all ages, from young children to seniors.

When detected early, most thyroid cancers are treatable. However, some thyroid cancers are aggressive and difficult to treat.

These are some of the many reasons why ThyCa: Thyroid Cancer Survivors’ Association, Inc. sponsors Thyroid Cancer Awareness Month each September.

This month will highlight the year-round activities of ThyCa participants in 55 countries to:

  • Increase thyroid cancer education
  • Raise awareness of the importance of early detection, treatment in accordance with expert guidelines, and lifelong monitoring
  • Inform the public about ThyCa’s free information, support services, and publications.
  • Increase awareness of the need for more thyroid cancer research.

The message for Thyroid Cancer Awareness Month is “Find It Early.” When detected early, most thyroid cancers are treatable. Early detection is a key to improving outcomes. Patient and caregiver education is also important, because thyroid cancer requires lifelong monitoring as recurrences can occur even decades after the diagnosis and initial treatment.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) encourages people to ask for a neck check each time they visit their doctor. Signs to discuss with the physician include a lump or fullness in the neck, lymph node swelling, difficulty breathing or swallowing, or voice changes.

“Health care professionals are essential to the detection of thyroid cancer,” says ThyCa Executive Director Gary Bloom of Olney, Maryland, himself a thyroid cancer survivor. “Done properly, a neck check can be as simple as touching the neck and watching the patient swallow. This can be done very quickly and won’t cause any delays for the medical office, but that 30 seconds could make all the difference in the world when it comes to diagnosing thyroid cancer. Most thyroid cancer is treatable if found early, but some types are very aggressive and difficult to treat.”

ThyCa invites everyone interested to help with thyroid cancer awareness efforts in their communities. A few of the activities that volunteers have organized:

  • In North Carolina, a 17-year-old who is a 3-year survivor of thyroid cancer is distributing the AACE Neck Check cards in her faith community, school, doctors’ offices, and other local organizations.
  • In New Zealand, which has a cancer awareness day on August 27, a thyroid cancer survivor is distributing the Thyroid Cancer Awareness Brochures with Catherine Bell and the AACE Neck Check cards, both available free from ThyCa.
  • In Pennsylvania, a hospital-based Endocrinology Department is providing awareness materials from ThyCa at a health fair.
  • In California, volunteers from the ThyCa Los Angeles Support Group are attending the Stand Up To Cancer Television Broadcast on September 10.
  • In New Jersey, Sherryl Pascal, Ms. East Coast Globe 2011, thyroid cancer survivor, will have a booth at a large community event.
  • In Indiana, a bank employee plans to distribute awareness materials to the employees.
  • In Georgia, a physicians’ group is planning a free thyroid cancer screening day in their outpatient offices.
  • In Pennsylvania, a young woman being married in September is honoring her mother, a thyroid cancer survivor, by giving out awareness materials at her wedding reception and donating to ThyCa for thyroid cancer research as her wedding favor.
  • In Rhode Island, a thyroid cancer survivor who previously experienced a gastric bypass will give Awareness Flyers and Neck Check cards to members of her gastric bypass support group.
  • In Florida and Pennsylvania, physicians will lead free Thyroid Cancer Seminars at ThyCa Support Group meetings, and in Wisconsin, a physician will also participate at a local support group meeting.
  • In California, Florida, Washington, and Wisconsin, new local support groups will start providing services; 70 local ThyCa support groups will hold meetings throughout the United States and in Canada, Costa Rica, and Philippines, and more than 20 additional local support group network facilitators are providing telephone and e-mail support to patients and caregivers in their communities.
  • Around the world, thyroid cancer survivors, caregivers, and friends are wearing and giving awareness wristbands and pins and giving awareness brochures and flyers to their friends and relatives.

ThyCa’s web site has hundreds of pages of information. It explains all types of thyroid cancer, diagnosis, treatment, research, clinical trials, and questions to ask your doctor. It also features a directory of local thyroid cancer support groups, connections to ThyCa’s 11 e-mail support groups, a calendar of coming events, and details about the Rally for Research and the ThyCa research grants.

Web site visitors can download ThyCa’s free publications, including awareness flyers, the new 7th edition of the Low Iodine Cookbook, fact sheets in English and Spanish, and online newsletters. The annual International Thyroid Cancer Survivors’ Conference is being held this year in Dallas, Texas, on October 15 – 17, 2010.

In addition, ThyCa’s web site section titled Raise Awareness gives downloadable flyers entitled, “Find It Early” and “Know the Signs,” a fact sheet titled “About Thyroid Cancer” and more materials. Free awareness brochures featuring actress and thyroid cancer survivor, Catherine Bell, co-star of the hit TV series, “Army Wives” and the free AACE Neck Check Cards are also available.

For free materials and tips on how to raise awareness, as well as information about thyroid cancer, ThyCa’s free support services, and the annual conference, e-mail to thyca@thyca.org, call toll free 1-877-588-7904, fax to 1-630-604-6078, write to PO Box 1545, New York, NY 10159-1545, or visit the web site.

Contents

September Is Worldwide Thyroid Cancer Awareness Month

This yearly event is sponsored by ThyCa. Check out the web site for brochures, posters, fliers, etc., to help you “spread the word” about thyroid cancer. Remember, every person we meet is another person we can help!

Each person can truly make a difference — that person is YOU! Make a difference!

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Thyroid Cancer Survivors Urge Neck Checks for Early Detection

Free Tools and Tips Available at www.thyca.org, Awareness Month Sponsor

Thyroid cancer is one of the few cancers continuing to increase in incidence, with an anticipated record of about 44,670 people newly diagnosed in the United States this year and more than 200,000 people expected to be newly diagnosed worldwide. Thyroid cancer affects people of all ages, from young children to seniors.

When detected early, most thyroid cancers are treatable. However, some thyroid cancers are aggressive and difficult to treat. ThyCa: Thyroid Cancer Survivors’ Association, Inc. sponsors Thyroid Cancer Awareness Month each September to spread the messages of early detection of thyroid cancer as well as lifetime monitoring.

This month highlights the year-round activities of ThyCa participants in 55 countries to:

  • Increase thyroid cancer education
  • Raise awareness of the importance of early detection, treatment in accordance with guidelines developed by thyroid cancer specialists, and lifelong monitoring
  • Inform the public about ThyCa’s free information, support services, and publications
  • Increase awareness of the need for more thyroid cancer research

A key message for Thyroid Cancer Awareness Month is “Find It Early.” Early detection is a key to improving outcomes. Patient and caregiver education is also important, because thyroid cancer requires lifelong monitoring as recurrences can occur even decades after the diagnosis and initial treatment.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) encourages people to ask for a neck check each time they visit their doctor. Signs to discuss with the physician include a lump or fullness in the neck, lymph node swelling, difficulty breathing or swallowing, or voice changes.

“Health care professionals are essential to the detection of thyroid cancer,” says ThyCa Executive Director Gary Bloom, himself a thyroid cancer survivor. “Done properly, a neck check can be as simple as touching the neck and watching the patient swallow. This can be done very quickly and won’t cause any delays for the medical office, but that 30 seconds could make all the difference in the world.”

ThyCa invites everyone interested to help with thyroid cancer awareness efforts in their communities. Examples of some of the activities that volunteers have organized:

  • In North Carolina, a 17 year-old who is a 3-year thyroid cancer survivor is distributing Neck Check cards in her faith community, school, doctors’ offices, and other local organizations.
  • In New Jersey, a 13 year-old girl is developing an awareness and fundraising campaign to honor her father, a thyroid cancer survivor.
  • In New Zealand, which has a cancer awareness day on August 27, a thyroid cancer survivor is distributing the Thyroid Cancer Awareness Brochures with Catherine Bell on the cover and the AACE Neck Check cards, both available free from ThyCa.
  • In Pennsylvania, a hospital-based Endocrine Department is providing awareness materials from ThyCa at a health fair.
  • In California, volunteers from the ThyCa Los Angeles Support Group are attending the Stand Up To Cancer Television Broadcast on September 10th.
  • In New Jersey, Sherryl Pascal, Ms. East Coast Globe 2011, thyroid cancer survivor, will have a booth at a large community event.
  • In Indiana, a bank employee plans to distribute awareness materials to all employees.
  • In Georgia, a physicians’ group will host a free thyroid cancer screening day in their outpatient offices.
  • In Pennsylvania, a young woman getting married in September is honoring her mother, a thyroid cancer survivor, by giving out awareness materials at her wedding reception and donating to ThyCa for thyroid cancer research as her wedding favor.
  • In California, the City Council of Fresno issued a proclamation for Thyroid Cancer Awareness Month, and Anjali Davis, ThyCa Fresno Support Group Facilitator, spoke at a city council meeting.
  • nd Neck Check cards to members of her gastric bypass support group.
  • In Florida, Pennsylvania, and Wisconsin, physicians will participate at local support group meetings.
  • In California, Florida, Washington, and Wisconsin, new local support groups are beginning; 70 local ThyCa support groups will hold meetings throughout the United States and in Canada, Costa Rica, and Philippines; and more than 20 additional local support group networks will provide telephone and e-mail support to patients and caregivers.
  • Around the world, survivors and caregivers are wearing and giving awareness wristbands and pins and giving awareness brochures and flyers to their friends and relatives.

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Public Service Announcements Promote Awareness

Three new video Public Service Announcements (PSAs) are now in their final production stages, ready to raise awareness via television and the Internet during Thyroid Cancer Awareness Month as well as year-round. Our special thank you to Nick Isenberg, film producer, for his outstanding contributions in developing these important PSAs.

In addition, a year-round radio PSA is available on ThyCa’s web site, courtesy of ThyCa Volunteer John Breen of WDTV News Channel 5 in Clarksburg, West Virginia.

Thank you Nick and John for your tremendous service to people everywhere dealing with a thyroid cancer diagnosis! We’re excited about these wonderful resources and eager to share them.

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Something Is Coming That You Really Don’t Want To Miss!By Pat Paillard

What is it? The 13th International Thyroid Cancer Survivors’ Conference on October 15-17, 2010, in Dallas, Texas.

If you’ve never attended a conference, you really should; you don’t know what you’re missing. I had never even heard of thyroid cancer. After my diagnosis and subsequent treatment, I attended a conference and was amazed at all the information I received and how friendly and supportive everyone was. I got so much from my first conference that attending has become a yearly ritual for me.

Whether you are a “newbie,” a short-term survivor, a long-term survivor, or a caregiver, you will benefit so much from attending. The speakers are all great, the participants have a lot of information and experiences to share with each other, the hotels are always very accommodating, and there is so much information to take home and share with others who can’t make the trip.

I hope to see you there.

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More than 60 Speakers Confirmed

We’re excited to announce that more than 60 speakers are confirmed for the 13th International Thyroid Cancer Survivors’ Conference, October 15-17, 2010 in Dallas, Texas.

The 35 distinguished medical professionals are coming from these 17 centers:

Boston University School of Medicine, Cleveland Clinic, Dana Farber Cancer Institute, Johns Hopkins Medical Institutions, Massachusetts General Hospital Cancer Center, Mayo Clinic, National Cancer Institute, New Mexico State University, New York University Clinical Cancer Center, Ohio State University, University of Chicago Medical Center, University of Colorado at Denver and Health Sciences Center, University of Connecticut Health Center, University of Pennsylvania, University of Texas M.D. Anderson Cancer Center, University of Texas Southwestern Medical Center, and Yale University School of Medicine.

Other specialists will lead sessions on coping skills and complementary approaches to well-being. Survivors and caregivers coping with every type of thyroid cancer will lead roundtables and discussions. In all, the conference will offer more than 100 session choices.

We invite you to join us for this unique weekend of learning from experts and sharing experiences and support with others who understand what you’re going through. Our hotel has a special $99 room rate for advance reservations. Click here to book your hotel room. You will need to enter “ThyCa” to get the arranged for discount rate. This rate is available under October 1st at 5:00 p.m. CDT.

Early-bird conference registration is open online and by mail at www.thyca.org through September 15th. Advance registration continues until October 9th. We also welcome walk-in attendees. Scholarships to cover the registration fee are available on request.

Visit www.thyca.org often for conference updates. Feel free to download and share the flyer. Help others find out about this tremendous opportunity for learning and support.

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Come to the 2010 Dinner/Auction Research Fundraiser

A wonderful evening of camaraderie, inspiration, and hope.

Saturday Evening, October 16, 2010, 6 p.m. to 9 p.m. At the Sheraton Grand Hotel DFW Airport (The Conference hotel)

To reserve your seat at the dinner, use the Dinner/Auction line on the registration form. The web site will also add a Dinner/Auction form.

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Dr. Karl To Speak on September 11, 2010, in Florida

We are pleased to announce that Michael Karl, M.D. will speak at the Saturday, September 11th, meeting of ThyCa North Miami Dade, Florida, Support Group, on THE ABC’s of THYROID CANCER. Learn about radioactive iodine treatment, new treatment guidelines, what your TSH is telling you, and much more. Michael Karl, M.D. is Chief of Endocrinology at Jackson North Medical Center. He is also Professor of Medicine at Florida International University’s Herbert Wertheim College of Medicine. Linda Chaplin and Fran Goodstat are the volunteer facilitators of ThyCa North Miami Dade. For details, visit www.thyca.org/sg/fl_n-miami-beach/.

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Dr. Jaume To Participate on September 11, 2010, in Wisconsin

Juan C. Jaume, M.D., Endocrinologist, will be a guest at the Saturday, September 11th meeting of the ThyCa Madison, Wisconsin, Support Group. Dr. Jaume is an Endocrinologist at the University of Wisconsin Hospital and Clinics, and a faculty member at the University of Wisconsin School of Medicine and Public Health. Tim Lau is the Madison support group’s volunteer facilitator. For details, visit www.thyca.org/sg/wi_madison/

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Dr. Agersborg To Speak on September 25, 2010, in Pennsylvania

At the Saturday, September 25th meeting of ThyCa Northwest Philadelphia, Pennsylvania, Karen E. Agersborg, D.O., Endocrinologist and Chief of Endocrinology at Chestnut Hill Hospital in Philadelphia, will speak and answer questions about well-differentiated thyroid cancer. The group meets from 10:30 a.m. to noon at Cathedral Village, Classroom #1, at 600 East Cathedral Road, Philadelphia, Pennsylvania. Pat Paillard is the volunteer facilitator. For more information, visit www.thyca.org/sg/pa_philadelphiaNW/

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You’re Invited: Survey on Thyroid Cancer Surgery and the Voice

If you have had thyroid cancer surgery, you’re invited to take part in this online survey about Thyroid Cancer Surgery and the Voice.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is helping ThyCa Medical Advisor David Myssiorek, M.D., study research team leader. This is not a new survey. We’ve reopened this survey from earlier in the year to invite additional participation beyond the more than 4,200 people who have already responded.

Please complete this online survey form. It takes just a few minutes. Your information will remain confidential. By participating in surveys, we can help impact our future care.

Click here to take part.

If you have already completed the survey, you will receive a thank you message rather than opening the first page of the survey. So, please click on the link, and take part if you haven’t already.

For more about the survey, click here. If you have questions, please e-mail outreach@thyca.org.

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Backpacks Donated To ThyCa for Pediatric Thyroid Cancer Support Project

Thank you to JanSport for a wonderful donation of backpacks for the Pediatric Backpack Project. Backpacks go to families with a child or teen with thyroid cancer. The free backpacks are filled with helpful thyroid cancer information, treatment guidelines, ThyCa’s Low-Iodine Cookbook, and the booklet Tim’s Tips for Children and Teens with Thyroid cancer, plus Spirit items, During the last 3 years, ThyCa has sent free backpacks to families all around the United States, as well as Canada, Philippines, and United Kingdom. Thank you very much, JanSport! Thank you also to Margaret-Mary White for her help in making this donation happen.

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Study Focuses on Post-Surgical Hypoparathyroidism

James Norman, MD, FACS, FACE, recently reported on his study of post-surgical hypoparathyroidism, in the Summer 2010 newsletter of the nonprofit patient support organization, the Hypoparathyroidism Association.

Hypoparathyroidism results from loss or damage to the parathyroid glands, located next to the thyroid gland, during surgery. People with hypoparathyroidism experience difficult symptoms and other life challenges, added costs, and the need to take high doses of calcium and Vitamin D every day for the rest of their lives.

Dr. Norman noted that the acceptable rate of hypoparathyroidism “during an operation on the thyroid or parathyroid glands is about 1% or less, as reported in the medical literature.”

He examined information from 215 patients with surgeon-induced hypoparathyroidism, of whom 80% had thyroid disease and 20% had parathyroid disease. The surgeons or their office managers provided information on the number of parathyroid or thyroid operations performed by that surgeon in the past 2 years.

Dr. Norman reported that “every patient who developed hypoparathyroidism had a surgeon that performed thyroid/parathyroid surgery less than twice per week. Ninety Five percent (95%) of the surgeons who caused this performed less than one thyroid/parathyroid operation per week.”

Over half of patients who were permanently hypoparathyroid never asked their surgeon about his/her experience in performing this operation.

Dr. Norman also reported that “surgeons who perform more than 150 thyroid/parathyroid operations per year are extremely unlikely to cause hypoparathyroidism, while those that perform fewer than 20 of these operations annually have a 10% chance of causing this or another serious complication.”

He concluded, “Patients must check on the qualifications and experience of their surgeons if they expect the lowest possible complication rates.”

Notes and credits:

(1) The Hypoparathyroidism Association web site is www.hypoparathyroidism.org.

(2) A ThyCa conference session in October will focus on coping with hypoparathyroidism, with James Sanders, Founder of the Hypoparathyroidism Association (HPTH), as well as Carol Sanders, Board Member, and Julie Hunsaker, also of HPTH. ThyCa and HPTH are working together toward our mutual goal of educating patients and reducing the incidence of post-surgical hypoparathyroidism.

(3) James Norman, MD, FACS, FACE, has authored over 200 peer-reviewed articles, mostly on endocrine and parathyroid disorders. He founded the National Parathyroid Education Foundation.

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Sherryl Pascal, Ms. East Coast Globe 2011, Raises Awareness

Sherryl Pascal, Ms. East Coast Globe 2010, and thyroid cancer survivor, has been busy raising awareness of thyroid cancer, as well as funds for thyroid cancer research. Last year, she donated the proceeds from the sale of her cute litter of “ThyCa Puppies” to ThyCa. This year she is hosting a booth at a large community event. We’re pleased to announce that Sherryl also will be joining us in Dallas in October for the 13th International Thyroid Cancer Survivors’ Conference. Thank you, Sherryl!

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More Events Support the 2010 Rally for Research

  • Thank you to Phil Doetch for your 1,000,000 Steps for Bob Walk, in memory of Bob Dubcich.
  • Thank you to Mohan Komanduri for running a marathon and raising funds at the same time for ThyCa.
  • Thank you to Jessica S. for your Bowl-a-Thon on September 26th in honor of your father, Bruce, a thyroid cancer survivor.
  • Thank you to everyone who has already signed up for the Dinner/Auction Fundraiser on Saturday, October 16th in Dallas, Texas.

All of the fundraisers, large or small, help ThyCa fund Thyroid Cancer Research so we can work toward a future of better treatment options, and cures for all thyroid cancer. Click here for details of these and other 2010 Rally for Research Events, and how you can get involved

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The Story of the Thyroid Cancer Colors

Why do we represent thyroid cancer with three colors? The Awareness Ribbon Pins, Magnet Ribbons, and ThyCa graphic all display the three colors: deep blue/purple, pink, and teal.

The 3 colors were selected nearly 12 years ago by thyroid cancer survivor.

Cherie LC, a ThyCa volunteer. The deep blue/purple represents the throat energy center, pink represents spiritual influences in healing, and teal is a healing color.

The 3-color combination also emphasizes the variety of situations with thyroid cancer, because there are different types of thyroid cancer. Also, thyroid cancer affects people of all ages, from young children through seniors.

September is Thyroid Cancer Awareness Month, and this month and throughout the year we can all wear our colors proudly. Thank you very much for raising awareness.

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Thank You to Organizations Supporting Thyroid Cancer Awareness Month

We soon will honor the participating organizations and individuals. Watch the Raise Awareness page on our web site.

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Second Edition Book Presents Expertise of 27 Physicians

Now available from ThyCa is the just-published Second Edition of Thyroid Cancer: A Guide for Patients that presents the expert knowledge of 27 physicians, plus other medical specialists, patients, and a caregiver. With 33% more content than the highly praised first edition, this respected reference has 434 pages (including numerous checklists and illustrations), 40 chapters, and 40 authors.

The forewords, by Ernst Mazzaferri, M.D., and R. Michael Tuttle, M.D., ThyCa Medical Advisors, will soon be available on the Reference Book page. The first edition is also available in Spanish. The order forms for both the English and Spanish editions are on the ThyCa web site. Proceeds from books ordered from ThyCa benefit thyroid cancer research and ThyCa’s free support services.

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Early-Bird Conference Registrations Come from 34 States, Canada, United Kingdom

People are coming from near and far to the 13th International Thyroid Cancer Survivors’ Conference. Early-bird registration continues through September 15th. Advance registration will continue, both online and by mail, until October 9. We also welcome walk-in attendees for onsite registration at the conference. Scholarships are available to help anyone who can’t afford the conference registration fee. Help spread the word, by telling others about this wonderful event. Hope to see you at the conference!

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The 15th Anniversary Collection Grows

We’ve received wonderful stories and poems for ThyCa’s 15th Anniversary Year. You, too, can be a voice for thyroid cancer! Help ThyCa mark our 15th Year Milestone. Send your story, poem, essay, or photo sharing your thoughts and images of your experience with thyroid cancer, to publications@thyca.org. Choose your theme: (1) My Thyroid Cancer Journey, (2) Voices of Survivors and Caregivers, (3) How ThyCa Helps Me. Send up to 500 words, in plain text in the e-mail message. Or send a photo in JPEG format, with a caption up to 25 words. Please include your first name, last initial or name, and where you live (whatever information you will allow us to share with others).

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Our Free Guestbook

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.

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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.

Almost every day our volunteer webmasters make new additions or updates. Recent additions include new local support groups and the latest conference speaker list.

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. A Chinese language translation is also in progress.

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.

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Low-Iodine Recipe of the Month
Mango and Sticky Rice Pudding
Contributed by Leah Guljord from a recipe on about.com

  • 1 cup Thai Sweet Rice (also called ‘sticky rice’, available at Asian food stores)
  • 1-2 ripe mangos, cut into bite-size pieces (frozen mango can be used, just be sure to thaw completely)
  • 4-5 Tbsp. sugar
  • 1/4 tsp. non-iodized salt
  • 1 can coconut milk
  • 1 ¾ cup water (for boiling or steaming the rice)

Soak the rice in 1 cup of water for at least 20-30 minutes, or up to 4 hours.

Do not drain the rice. Simply add 3/4 cup (more) water, plus 1/4 can coconut milk, 1/4 tsp. salt, and 1 Tbsp. sugar. Stir this into the rice.

Bring to a gentle boil, then partially cover with a lid (leaving some room for steam to escape). Reduce the heat (to medium-low if your stove has temperature settings).

Simmer this way for 20 minutes, or until the coconut-water has been absorbed by the rice. Turn off the heat, but leave the pot on the burner with the lid on tight. Allow to sit for 5-10 minutes.

To make the sauce, warm (do not boil) the rest of the can of coconut milk over medium-low heat (5 minutes). Add 3 Tbsp. sugar, stirring to dissolve.

Taste-test the sauce for sweetness, adding more sugar if desired. (Note that it will taste less sweet when added to the rice).

Add scoops of rice (portion out 1 scoop per person) directly to the sauce pot and stir over low heat, gently breaking apart large lumps, but leaving smaller lumps/chunks). Now add the mango pieces and gently stir until everything is warmed through. Portion out into serving bowls, making sure that everyone has equal amounts of rice, mango, and plenty of sauce. Enjoy!

Serves 3 – 4. This recipe is so delicious. Tastes great left-over cold also

Thank you, Leah, for encouraging so many people to contribute to the FREE Downloadable Low-Iodine Cookbook, and for your wonderful work with this book.

Free and Downloadable

Download the new expanded 7th edition of the Low-Iodine Cookbook in English for free, with more than 3400 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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Serving People in 55 Countries

ThyCa is proud to report that our services currently are reaching people throughout the United States and in 54 other countries around the world. Thank you to everyone who is helping to connect people worldwide with ThyCa’s free education, support services, and special events.

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Follow ThyCa on Facebook

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!

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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 2010.

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.

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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). Click here for our secure online Membership Form and our mailed Membership Form.

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Events Preview

For details and contacts, go to our Calendar and see the articles earlier in this newsletter.

  • Every Day: Thyroid Cancer Awareness Activities by volunteers around the world, to promote early detection, care according to expert standards, connections with free education and support services, and research for cures for all thyroid cancer.
  • Every Month. ThyCa’s Thyroid Cancer Support Group Meetings in Your Community. Several new support groups begin in September.
  • September 2010. Thyroid Cancer Awareness Month, Worldwide. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. since 2000. Click here for tips on raising awareness, plus free materials.
  • Friday, September 10, 2010. Stand Up To Cancer One-Hour Broadcast at 8 p.m. / 7 p.m. Central on ABC, CBS, NBC, FOX, HBO, and other channels. ThyCa: Thyroid Cancer Survivors’ Association, Inc. is helping publicize this event. Volunteers from the ThyCa Los Angeles Support Group will represent ThyCa at this event, wearing Thyroid Cancer Awareness Shirts as part of Thyroid Cancer Awareness Month.
  • Saturday, September 11, 2010. Michael Karl, M.D., To Speak at the meeting of ThyCa North Miami Dade, Florida, Support Group, on THE ABC’s of THYROID CANCER.
  • Saturday, September 11, 2010. Juan C. Jaume, M.D., Endocrinologist, will be a guest at the meeting of the ThyCa Madison, Wisconsin, support group.
  • Saturday, September 25, 2010, Karen E. Agersborg, D.O., Endocrinologist and Chief of Endocrinology at Chestnut Hill Hospital in Philadelphia, will speak at the meeting of the ThyCa Northwest Philadelphia, Pennsylvania, Support Group.
  • Friday, October 1 (evening) through Sunday, October 3 (afternoon), 2010. Halifax, Nova Scotia, Canada. Thyroid Cancer Skills for Healing Retreat. Free weekend support group for people affected by thyroid cancer. With Rob Rutledge, M.D., FRCPC, Radiation Oncologist, Dalhousie University and Nova Scotia Cancer Centre, and Tim Walker, Ph.D., Eastwind Stress Reduction. For more information, call Helen at 902-473-3887 or visit HealingandCancer.org. Sponsored by Canadian Cancer Society.
  • Friday, October 8, 2010, Los Angeles, California, at UCLA Medical Center. Cancer-Related Legal Issues. Free educational conference sponsored by the Cancer Legal Resource Center.
  • The 13th International Thyroid Cancer Survivors’ Conference
    October 15-17, 2010 in Dallas, Texas
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
  • The 9th Annual Dinner/Auction Fundraiser for Thyroid Cancer Research.
    October 16, 2009 in Dallas, Texas

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Every Day…

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.

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About ThyCa NEWS NOTES

Copyright (c) 2010 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue: Leah Guljord, Pat Paillard, 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.

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 ojur web site.