ThyCa NEWS NOTES – November 2011

In This Issue:

ThyCa Online and In-Person Support Groups Expand

More than 90 communities now have Local ThyCa Support Groups, led by volunteer facilitators, and our 12 online support groups have grown to more than 14,000 members. These groups are all free.

Support groups are wonderful places to share experiences, information, understanding, and encouragement.

At local group meetings, you meet and get to know others in person. The local groups serve communities all around the United States and in Canada, Costa Rica, and Philippines.

Find out whether there is a local ThyCa Support Group near you, at this page:

Don’t see a local support group near you? Find out how ThyCa can help you start a new group. Just

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CAPRELSA (vandetanib) Information Added to website

A web site and phone connection for key information about CAPRELSA (vandetanib) are now available in our Links list as well as on the Medullary Thyroid Cancer site, both connected from the left side of our Home Page CAPRELSA was approved in April 2011 by the U.S. Food and Drug Administration for treating some patients with metastatic medullary thyroid cancer (MTC). It’s the first drug to receive FDA approval for treating MTC.

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Cabozantinib Clinical Trial

On October 24, 2011, Exelixis reported on the late-stage clinical trial comparing the drug candidate cabozantinib to a placebo as a treatment for advanced medullary thyroid cancer. The company said that patients who received the drug had median survival of 11.2 months before death or disease progression, compared to 4 months for patients who took the placebo. Exelixis said the improvement was greater than it expected.

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ThyCa Executive Director Named to SNM Patient Advocacy Advisory Board

We are pleased to announce that Gary Bloom, ThyCa Executive Director, has been named to the Patient Advocacy Advisory Board (PAAB) of SNM (Society of Nuclear Medicine). SNM is an international professional association focusing on nuclear medicine and consisting of 16,000 physicians, technologists, and scientists. The PAAB provides SNM leaders, staff, and members with the patient perspective regarding molecular imaging and nuclear medicine matters and helps ensure that patients’ concerns, ideas, experiences, and recommendations are reflected in SNM’s endeavors.

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Team Neck and Neck To Take Part in 2012 Walt Disney World Marathon Weekend

In January 2012, Team Neck and Neck, organized and led by thyroid cancer survivor and activist, Tina Descovich, will join the 2012 Walt Disney World Marathon Weekend to raise awareness of thyroid cancer as well as funds for ThyCa.

Tina has also designed a special new running shirt, the Thyroid Cancer Neck Check Awareness Shirt, for runners to wear as they run for thyroid cancer awareness. ThyCa displayed and sold similarly designed colorful shirts at the Conference in October, and will soon have them available for you to buy through our web site.

“There’s something magical about being in a race, knowing each mile is making a difference for Thyroid Cancer Awareness and Research, Tina writes. “Running in races is an extremely rewarding experience for me. I like setting goals and meeting them. I like to accomplish things.”

To find out more about Tina’s wonderful effort, and how you can support it and ThyCa at the same time, go to

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Annual Conference Sets New Records

The 14th International Thyroid Cancer Survivors’ Conference was a tremendous success. More than 500 people participated from all around the United States, four provinces of Canada, Mexico, Portugal, and United Kingdom. More than 70 speakers led more than 100 sessions. New at this year’s conference were a series of 3 discussion meetings among ThyCa leaders, members, physicians, and representatives of the U.S. Nuclear Regulatory Commission regarding patient release after receiving radioactive iodine, a topic also the subject of a conference session.

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Dinner/Auction Raises $40,000 for Thyroid Cancer Research

The 10th Annual Dinner/Auction Fundraiser was a great success, raising $40,000 for thyroid cancer research. Many thanks to our wonderful supporters for your donations of auction items, your bids on these items, and your help with planning and running this wonderful event.

Special thanks to Steven Sherman, M.D., for your inspiring talk in support of more thyroid cancer research. Thank you also to the anonymous donor who invited attendees to Stand Together To Support Research, donating $10 for each person who stood up (everyone in the room did!), raising nearly $2,000 in just a few moments.

This wonderful support helps ThyCa continue to fund thyroid cancer research—now 9 straight years, 16 different grants (some 1 year, and some 2-year grants), and totaling more than $750,000. ThyCa is pleased to announce that we will award three new research grants in 2012.

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Letter from a Conference Participant:

ThyCa’s Always Here for Us!
By Pat Paillard

ThyCa is always here to give us information and support, and once again I was positively overwhelmed at the Conference.

Another great one! Everyone gets along so well and shares their stories and concerns, making everyone’s journey easier.

I got to know such wonderful fellow survivors, physicians, and caregivers that i realized maybe something good can come from cancer. ThyCa has helped me to deal with my disease and I can better help others deal with theirs. That really makes me feel good.

ThyCa Conferences give all attendees the ability to share their experiences and learn from others who “have been there” and also become sponges and soak up all the newest information about thyroid cancer from the experts who care for people with it every day.

Thank you, ThyCa, for giving us a chance to find the “good” in thyroid cancer.

Hope to see you all next year in Chicago! Don’t miss it!

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Mark Your Calendars for Chicago and the 2012 Conference

We’re pleased to announce that the 15th International Thyroid Cancer Survivors’ Conference will take place in Chicago, Illinois, on October 19 – 21, 2012.

The conference will take place at the beautiful Eaglewood Resort and Spa in Itasca, Illinois, and again, we’ve arranged a special room rate of $99 for conference attendees.

The 2012 Conference flyer and volunteer opportunity form are at Save the dates, help spread the word, and plan to attend!

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ThyCa Again Accepted into the Combined Federal Campaign
ThyCa’s CFC # is 11675

ThyCa: Thyroid Cancer Survivor’s Association 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.

Donations to ThyCa through CFC will support free education, support, and resources, as well as thyroid cancer research.

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Serving People in 64 Countries

ThyCa’s services and resources are available free of charge to people everywhere. We’re pleased to report that we’re now serving people in 64 countries around the world.

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Physician Speaks at ThyCa Seattle Support Group Meeting

Thank you to Stephen W. Bayles, M.D., FACS, Surgeon, who discussed thyroid surgery and conducted a Q&A session at the meeting of the ThyCa Seattle, Washington, Support Group. Roselle Kovitz and Peter Crane are the group’s volunteer facilitators. The group’s web page is at

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Low-Iodine Recipe of the Month
Contributed by Jackie K. of Virginia

Fall Festive Pork Chops

3 or 4 pork chops (with or without bone). Optional: lightly salted (noniodized salt) and peppered.
2 sweet potatoes, peeled and sliced
2 onions, peeled and sliced
2 apples, peeled and cut into wedges
1 teaspoon black pepper
Pinch of non-iodized salt
3 Tablespoons brown sugar
1 teaspoon cinnamon

Preheat oven to 350 degrees F. Place the pork chops in a 3 to 5-quart cook pot that can be placed into the oven. Top with onions, sweet potatoes, and apples. Sprinkle with black pepper, brown sugar, and cinnamon. Cover with lid. Cook in oven for 1 hour. Enjoy!

Editor’s Note: Thank you, Jackie, for contributing your recipe. We will include it in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

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

The Cookbook is also available in:

  • 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

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What’s New on the Web Site?

  • Videos of Medullary Thyroid Cancer Journey Stories
  • Updates on Caprelsa (vandetanib)
  • Added Rally for Research news
  • More events on our Calendar
  • and more

If you’re new to thyroid cancer, a good place to start reading is the Newly Diagnosed section. Our web site has over 650 pages, with the medical content receiving review and input from more than 50 distinguished physicians and other medical professionals.

We update the web site weekly and often several times a week. Visit it often for the latest updates.

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Follow ThyCa on Facebook and Twitter

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ThyCa’s Free Guestbook

By signing up in ThyCa’s free Guestbook, you’ll receive the latest news about thyroid cancer, new free publications, events, and more.

The standard of care for thyroid cancer has changed dramatically in the past few years. Research continues to make advances.

We want to help you stay connected and informed. Our mission is to be there for every person affected by thyroid cancer.

If you haven’t already signed up, we invite you to sign up today.

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Join Us, Become a Member

Help us sustain, strengthen, and extend our services. We invite you to become a member of ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world. Members receive our quarterly Membership Messenger newsletter.

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

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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 have again awarded 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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Volunteer Opportunities

  • Are you a Web 2 user? Get involved on our Web 2 team.
  • Do you have talents in outreach? Help us expand our outreach for early detection, treatment and followup with expert guidelines, and research to cure all thyroid cancer.
  • Are you connected with a business that might be interested in making an in-kind donation to ThyCa? Could be supplies and/or expertise.

To volunteer for any of these activities, e-mail

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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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Copyright (c) 2011 ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at

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.

Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.

Thank you to our writing, editing, and proofreading team for this issue: Dana Fusco, Leah Guljord, Pat Paillard, Barbara Status, Cherry Wunderlich, and Gary Bloom.

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. Contact us for free awareness materials and information about our free services and special events. E-mail to, 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.