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ThyCa News

ThyCa NEWS NOTES - April 2011

04/2011

In This Issue:

FDA Approves Vandetanib

On April 6, 2011, the U.S. Food and Drug Administration approved vandetanib. It's the first drug approved for Medullary Thyroid Cancer. FDA approved vandetanib to treat adults with metastatic medullary thyroid cancer who are ineligible for surgery and have disease that's growing or causing symptoms.

Thank you to the more than 500 survivors and caregivers who wrote to the FDA in support of approval of this new drug, and to those who came from long distances to speak at the FDA meeting in December 2010. Articles in ThyCa’s November, December, & January newsletters give background. ThyCa's web site has added further information.

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Learn From Experts at 4 More Free Workshops in April, May, and June

Register on our website or onsite at the Workshop.

These four events are in addition to the workshops held in Philadelphia, Pennsylvania, on April 9 and in St. Louis, Missouri,on April 16.

  • Friday, April 29 (evening) and Saturday, April 30, 2011 (all day). Stowe, Vermont.
    New England Thyroid Cancer Survivors’ Workshop in conjunction with the Stowe Weekend of Hope. Speakers include Beatriz Tendler, M.D., Endocrinologist, University of Connecticut Medical Center; Ming-Kai Chen, M.D., Yale University Medical Center; Anthony Sena on Thyrogen; Survivors’ Panel; and Free Saturday Evening Thyroid Cancer Dinner and Social Time for those who reserve their dinner space with Jaime Toth, Facilitator, ThyCa Southern Connecticut Support Group. Workshop sponsored by Stowe Weekend of Hope and ThyCa: Thyroid Cancer Survivors’ Association, Inc.

  • Monday, May 2, 2011, 5 p.m. - 8 p.m. Chicago, Illinois.
    Free Dinner Symposium: Midwest Thyroid Cancer Survivors’ Workshop in Chicago. Speakers include Peter Kopp, M.D., Endocrinologist; Dina Elaraj, M.D., Surgeon; Jose Dutra, M.D., Surgeon; Gary Dillehay, M.D., Nuclear Medicine Physician; and Cord Sturgeon, M.D., Surgeon. Co-sponsored by Robert H. Lurie Cancer Center of Northwestern University and ThyCa: Thyroid Cancer Survivors' Association, Inc. Refreshments provided to those who pre-register.

  • Saturday, May 28, 2011, 8:30 a.m. — 3:15 p.m. St. John’s, Newfoundland and Labrador.
    Free Newfoundland and Labrador Thyroid Cancer Survivors’ Workshop/Information Day. Featured topics and speakers include New Imaging Techniques for the Detection of Thyroid Cancer in Nuclear Medicine with P eter Hollett, M.D., FRCPC, Chief, Division of Nuclear Medicine; New Guidelines From the American Thyroid Association – Individualized Treatment and Follow-up Using Staging and Prognostic Systems with Vikram Chandurkar, M.D., FRCPC, Assistant Professor, Division of Endocrinology; Nutrition, Low Iodine Diet, & Thyroid Cancer with Gerri Anne Devereaux, Dietitian; and Roundtable: Challenges of Coping with Thyroid Cancer and Handling Full Time Work, Family Responsibilities, or Both with Joanie Bruce, Ida Marrie, & Grace Dean, ThyCa Newfoundland and Labrador Thyroid Cancer Support Group. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

  • Saturday, June 11, 2011, 8 a.m. – 5 p.m. Silver Spring, Maryland.
    Mid-Atlantic Thyroid Cancer Survivors’ Workshop. Speakers include Andrew J. Bauer, M.D., COL MC USA, Endocrinologist, Walter Reed National Military Medical Center and Uniformed Services University, Bethesda, MD, and The Thyroid Center, Children’s Hospital of Philadelphia, Philadelphia, PA; Kenneth D. Burman, M.D., Endocrinologist, Washington Hospital Center, DC; Bruce Davidson, M.D., Otolaryngologist (Surgeon), Georgetown University Medical Center, DC; Gary L. Francis, M.D., Ph.D., Endocrinologist, Virginia Commonwealth University, VA; Jacqueline Jonklaas, M.D., Endocrinologist, Georgetown University Medical Center, DC; Gigi Meinecke, D.M.D., F.A.G.D., Dentist, University of Maryland School of Dentistry, MD; Douglas Van Nostrand, M.D., Nuclear Medicine Physician, Washington Hospital Center, DC. Sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc.

At these events, you’lllearn the latest information about treatment and research and get answers to your questions about thyroid cancer care, both short-term and over the long term. You’ll also have the opportunity for peer discussion roundtables with other thyroid cancer survivors and caregivers.

Thyroid cancer survivors, their families, caregivers, and friends are invited to attend. These six free educational events this spring are sponsored or co-sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc. Thank you to everyone involved in these workshops, as well as all who organized and spoke at the workshops in Philadelphia, Pennsylvania, on April 9 and St. Louis, Missouri, on April 16.

These events are all free. Come for all or part of the day. You may register either through our web site on our Conferences/Workshops page or onsite at the workshops.

Visit ThyCa's web site for further details about the speakers, programs, and directions to the meetings.

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Radiation Exposure and Chernobyl 25th Anniversary Draw Media Attention

Since early March, the news from Japan about the earthquake, tsunami, and nuclear power plants in the area have focused attention on many issues related to radiation, including radioactive iodine and the thyroid gland.

In addition, April 26, 2011, marks the 25th anniversary of the Chernobyl nuclear accident. In last month’s newsletter, we provided a link to an interview with ThyCa medical advisor Kenneth D. Burman, M.D.

To provide further education regarding radiation exposure and the thyroid gland, ThyCa has added links to statements by medical professional associations and an article by endocrinologist Glenn Braunstein, M.D., in the Radiation Exposure section of the web site.

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FAQ: How Common Is a Change in Taste after Radioactive Iodine (RAI)?

This question comes up often in ThyCa’s face-to-face and electronic support group discussions. The answer:

“As many as a third of all patients will experience changes in taste after their first I-131 therapy,” notes Douglas Van Nostrand, M.D., Nuclear Medicine Physician at the Washington Hospital Center in DC, and ThyCa Medical Advisor, in the reference book “Thyroid Cancer: A Guide for Patients” (Second Edition, 2010).

He continues, “Food may taste metallic or like cardboard, or it may not have any flavor at all. This side effect may begin a few days to weeks after the I-131 therapy and lasts typically for several weeks and rarely for several months. Permanent changes in taste after the first I-131 therapy are rare, but the risk increases with higher individual dosages or total accumulated dosages.”

Dr. Van Nostrand details the possible side effects of RAI, as well as ways to prevent or treat them, in Chapter 26 of “Thyroid Cancer: A Guide for Patients.”

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Where Do ThyCa Support Groups Meet?

Face-to-face ThyCa Support Groups meet across the United States and in Canada, Costa Rica, and Philippines. These are wonderful places to meet others in your community who are coping with thyroid cancer.

Find out whether there is a ThyCa Support Group near you, and attend meetings if you can. If you’d like information about starting a group in your community, contact the Support Group Team coordinator.

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A Recent E-Mail…

Hello, folks. I was diagnosed with early stage thyroid cancer and got a full thyroidectomy in mid-December and radioactive iodine a month later. I am also a Type 1 diabetic, which made it especially difficult to stick to the low iodine diet. So I just want to thank you for your Low Iodine Cookbook. I cooked a few of the recipes. They were delicious. Without them, I would have muddled

through on a diet of almond butter, egg whites, rice cakes, matzo and unimaginative chicken cutlets and ground beef/pasta. With them, my wife and I had satisfying meals. Thanks!

(Editor’s note: The Free Low-Iodine Cookbook is available in English, French and Spanish.

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ThyCa Exhibits at National Comprehensive Cancer Network (NCCN) Meeting

At the recent Annual Meeting of the NCCN, held in Florida, three ThyCa volunteers handled ThyCa’s exhibit and met numerous physicians involved in treatment and research for all types of cancer. Thank you very much to Christine Ciletti, Lori Grossman, and Linda Leibovici for representing ThyCa at this important event for medical professionals involved in cancer care and research.

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Would You Like Free Materials for Raising Awareness?

We’ll be happy to mail you free awareness and outreach materials for your community event or for giving and sending to your friends, relatives, and community networks? Just send your complete mailing address, with a note about what materials you’d like as well as quantities, to thyca@thyca.org. Thank you for your help in spreading the word about awareness.

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Twenty-Nine Medical Professionals Confirmed for Los Angeles!

It’s 6 months till the 14th International Thyroid Cancer Survivors’ Conference, October 14-16, 2011 in Los Angeles, California. We’re excited to have already confirmed 29 distinguished medical professionals who will come from a wide range of leading medical centers to speak at the conference.

This unique weekend brings a tremendous opportunity to learn the latest about thyroid cancer treatment, long-term monitoring, and research advances from numerous outstanding leaders in thyroid cancer care. It’s also a place to see old friends and meet new friends in the world of thyroid cancer.

This unique event will take place at the Hilton Los Angeles Airport Hotel, with free transportation from the Los Angeles International Airport. We’ve arranged a special sleeping room rate of $99 plus tax per night.

Mark your calendars and plan to attend. We hope to see you there. Details and updates are continually being added to our website.

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Dinner/Auction for Research Seeks Auction Item Donations

The annual Dinner/Auction Fundraiser for Thyroid Cancer will take place in Los Angeles on Saturday evening, October 15 at the Hilton Los Angeles Airport Hotel. The funds raised help make possible ThyCa’s research grants, now in our 9th consecutive year.

Would you like to donate an auction item to this important event? Details and the donation form are now on the web site, in the Conference and Rally for Research pages.

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Hypoparathyroidism Association (HPTH) Conference in June

The 5th International Hypoparathyroidism Conference will take place in Rockville, Maryland, on June 2-4, 2011. This informative event will have presentations by physicians and other specialists. For more information and registration, visit www.hpth.org.

Hypoparathyroidism can result from the removal of or damage to the parathyroid glands during thyroid surgery, and those affected need to take calcium daily for the rest of their lives. There are other causes of hypoparathyroidism as well. The nonprofit Hypoparathyroidism Association (HPTH) offers education and support services for people affected by hypoparathyroidism. ThyCa and HPTH are collaborating in an effort to reduce the incidence of this potential complication of thyroid surgery.

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Cancer Legal Rights Conferences

Free one-day conferences will take place in three cities (Chicago, IL, Washington, DC, and Ann Arbor, MI) during 2011, sponsored by the Cancer Legal Resource Center with ThyCa’s support in publicity. Visit our Calendar page for details.

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University of Pennsylvania Sponsors Free Thyroid Cancer Meeting

On Friday, April 8, 2011, ThyCa exhibited at the Focus on Thyroid Cancer Meeting, sponsored by Abramson Cancer Center at the University of Pennsylvania. ThyCa also received a special award for thyroid cancer advocacy at this event. The next newsletter will have details.

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Endocrinologists Speak at Support Group Meetings in Nevada

Thank you very much to:

  • Dr. W. Reid Litchfield, Endocrinologist, for leading a question and answer session at the March meeting of the ThyCa Southern Nevada Support Group. Kathy Cannon and Leigh Ann Hinote are the group’s volunteer facilitators. For future meeting schedules, visit www.thyca.org/sg/nv_lasvegas/.
  • • Dr. Lisa Abbott, Endocrinologist, for speaking about thyroid cancer care at the April meeting of the ThyCa Reno Support Group. Marta Brown and Marion Hammond are the group’s volunteer facilitators. For future meeting schedules, visit www.thyca.org/sg/nv_reno/.

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What’s New on www.thyca.org?

Among the additions to the website are links to recent articles about treatment and research advances and about radiation exposure, additional workshops added to the Calendar page, the complete March newsletter, new local support groups, and more.

Our web site has more than 650 pages of content. More than 50 distinguished physicians plus numerous other specialists provide ongoing input and review of the medical information. We greatly appreciate the wonderful support of these medical specialists.

We update and expand the web site at least once a week. Thank you to our Web team, consisting of our webmasters: Betty Solbjor and Joel Amromin; our Publications Committee members; and our Medical Reviewers.

Visit www.thyca.org often for the latest information updates, the schedules of local support group meetings, and news about special events, or to get involved.

Let us know if you have suggestions for additional web site content, as well as additional questions to be answered by physicians. E-mail your ideas to publications@thyca.org. This is our web site, and it benefits from everyone's contribution. It's also a great way to get involved!

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Low-Iodine Recipe of the Month
Contributed by Melissa M.

Chicken Stir-Fry

3 ounces Natural Chicken Breast, cubed (no broth injected)
Canola Oil
¾ cup zucchini – cut up
¾ cup mushrooms – sliced
1 large carrot sliced into thin disks

Sauce:

½ cup honey
1 clementine or ½ an orange
½ cup chopped unsalted cashews (I used food processor to chop)
Cracked Red Pepper – to taste

Cook chicken in skillet in a small amount of oil (I use canola) until fully cooked.

Add in zucchini, mushroom and carrots and cook until vegetables begin to cook.

In a separate bowl, combine honey and squeeze the juice of one whole Clementine or about ½ an orange into the honey. Mix thoroughly. Stir the chopped unsalted cashews into the sauce. Add in cracked red pepper to taste, I like things spicy, so I added quite a bit.

Pour the sauce into pan with the chicken and veggies and simmer for several minutes.

I served over basmati rice – YUM!

Melissa writes, “I want to say thank you SO much for this WONDERFUL resource you provide to all of us living with and through Thyroid Cancer. I am very grateful for the time and effort it took to compile such a wonderful book of recipes and diet guidelines, and can tell you that it has been such a help for me!”

Editor’s Note: Thank you, Melissa, for contributing this recipe, as well as a second recipe. We will include them in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

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

The Cookbook is also available in 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

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

On Twitter, at 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 will again 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 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). For our online Membership Form and our mailed Membership Form, go to our Membership 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 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.

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.

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: Leah Guljord, Melissa M., 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 thyca@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.