ThyCa NEWS NOTES – February 2011

In This Issue:

ThyCa Supports International Rare Diseases Day

February 28th brings an annual global event, International Rare Diseases Day, coordinated internationally by EURORDIS and in the U.S. by the National Organization for Rare Disorders. ThyCa: Thyroid Cancer Survivors’ Association is proud to again be a supporting partner for this important observance.

This event focuses attention on rare diseases as a public health concern. Patients, their families, caregivers and researchers show their support by posting stories, videos, and blogs or hosting or attending events to raise awareness about challenges associated with living with a rare disease.

The global theme for 2011 is “Health Inequalities.” This refers to the fact that more research and more treatments are needed. Also, people with rare diseases often have difficulty getting properly diagnosed, as well as accessing treatments or needed services.

While there are approximately 6,800 diseases considered rare in the U.S., only about 200 of these have FDA-approved treatments. Patients are often treated “off-label”, raising problems related to insurance. Most rare diseases are serious. Many are chronic or lifelong.

Learn about the rarest types and situations with thyroid cancer:

  • Anaplastic Thyroid Cancer
  • Medullary Thyroid Cancer and
  • Thyroid cancer in children and adolescents (differentiated (papillary, follicular) or medullary) .
  • In addition, the reference book “Thyroid Cancer: A Guide for Patients” has a chapter on variants of well-differentiated thyroid cancer, including tall cell, columnar, insular, Hurthle cell, and other) (2nd edition, 2010, Keystone Press, more information).

Help raise awareness of thyroid cancer and the need for early detection. Help connect patients and families with the free support services and resources. Get the free AACE Neck Check Cards, downloadable flyers, and more, from ThyCa.

Visit the Raise Awareness page to get materials and find out how you can help.

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Hopeful Results from Recent Study of Treatment of Anaplastic Thyroid Cancer

A recent report from researchers and clinicians at the Mayo Clinic described an aggressive multimodal treatment approach that offers hope for for people who newly diagnosed anaplastic thyroid cancer that is locoregionally confined rather than metastatic. Ten patients received the multimodal therapy. Their treatment included surgery if feasible, and, for all the patients, intensity-modulated radiation therapy (IMRT), and radiosensitizing plus adjuvant chemotherapy (docetaxel plus doxorubicin).

The research team, led by Robert L. Foote, M.D., concluded that “the aggressive multimodal therapy appears to improve outcomes, including survival in stages IVA and IVB regionally confined ATC, but remains of uncertain benefit in patients with stage IVC (metastatic) disease.” The researchers also noted, “also uncertain is the optimal chemotherapy regimen to use in conjunction with IMRT. Further multicenter randomized trials are required to define optimal therapy in this rare but deadly cancer.”

The article is titled “Enhanced survival in locoregionally confined anaplastic thyroid carcinoma: a single-institution experience using aggressive multimodal therapy.” It was published in Thyroid in January 2011. The authors are Foote RL, Molina JR, Kasperbauer JL, Lloyd RV, McIver B, Morris JC, Grant CS, Thompson GB, Richards ML, Hay ID, Smallridge RC, Bible KC. The abstract is available atwww.ncbi.nlm.nih.gov/pubmed/21162687.

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10th Annual Megan Stendebach Memorial Golf Classic To Raise Funds for Research

We are proud to announce that the 10th Annual Megan Stendebach Memorial Golf Classic is scheduled for Sunday, May 1, 2011, with a 9 a.m. start at the Northcliffe Golf Club in San Antonio, Texas. The Golf Tournament was originated by Megan Stendebach with the support of John Oaks and all the wonderful people of the Hangin’ Tree Saloon in San Antonio. More recently, the tournaments have been held in Megan’s memory. They have raised a total of more than $100,000 for thyroid cancer research.

Our special thanks to John Oaks, owner of the Hangin’ Tree Saloon, for your wonderful support of ThyCa through this event honoring the memory of longtime ThyCa volunteer Megan Stendebach.

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Free One-Day Regional Workshops Planned

These FREE one-day events are highly educational, and a great chance to meet others who are coping with thyroid cancer.

  • 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.

Watch the ThyCa web site for news about these and more free one-day thyroid cancer workshops, with physician speakers.

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Take Part in these Online Surveys: Make Your Voice Heard

ThyCa Medical Advisors developed these surveys as part of their research aimed at improving knowledge and thyroid cancer care. It takes just a few minutes to complete each survey. Please take part.

  • Survey about Radioactive Iodine and the Salivary Glands
  • Survey about Thyroid Surgery and the Voice

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Come to a Local Support Group Meeting in Your Community

These meetings are wonderful places to meet others in person, and share experiences, understanding, and encouragement.

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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Newest Online Community Discusses Wide Range of Topics

Already people from eight countries have joined the new free ThyCa-Inspire Online Support Community—Australia, Canada, France, Germany, Greece, Philippines, United Kingdom, and United States,

This group now has a button and link on the right side of ThyCa’s home page. Or you can join by going tohttp://thyca.inspire.com. This online community connects patients, families, friends and caregivers for support and inspiration.

Some recent topics: “Newly found nodule,” “It’s been a long journey,” “Mom of thyca patient,” “What to tell children,” “New and grateful!,” “Meddies anywhere.”

You have the choice of 12 discussion categories for different types and situations with thyroid cancer. When you join (free), you also control your own privacy settings, as well as which topics to read and whether to respond.

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Free Packets for New Patients

Packets for newly diagnosed patients or patients new to ThyCa are free. Just send your name and address to thyca@thyca.org. The packets include the following:

  1. Thyroid Cancer Awareness Brochure featuring actress Catherine Bell
  2. Thyroid Cancer Fact Sheet
  3. “Do You Have Thyroid Cancer” Brochure
  4. ThyCa Patient Services Information wallet card
  5. Local Support Group list
  6. Know Your Pills Information Sheet
  7. Low Iodine Diet Guidelines
  8. ThyCa Resources List
  9. Events Preview
  10. and more.

Become an informed patient; send for your packet today.

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Free Seminars Educate Survivors and Caregivers

Medical professionals in four states contributed their time and expertise to educate thyroid cancer survivors and caregivers at meetings of four ThyCa Local Support Groups in January and February.

Our thanks to:

Lisa Abbott, M.D., Endocrinologist, Reno, Nevada, for presenting and answering questions about thyroid cancer care on February 8th at Renown Regional Medical Center, Reno, Nevada. This free meeting was organized and hosted by the ThyCa Reno Support Group, Marta Brown and Marion Hammond, Co-Facilitators. www.thyca.org/sg/nv_reno/

Dr. Herbert Chen, Surgeon at the University of Wisconsin School of Medicine, Madison, Wisconsin, for presenting and answering questions about thyroid cancer care at University of Wisconsin Hospitals and Clinics. This free meeting was organized and hosted by the ThyCa Madison Support Group, Tim Lau, Facilitator.

Cherly Long, Nuclear Medicine Department, Shady Grove Adventist Hospital, Rockville, Maryland, for explaining the hospital’s radiodine treatment and post-RAI procedures at the free January meeting of theThyCa Rockville Support Group, Ronni Emden and Sheldon Lehner, Co-Facilitators.

Dr. Alison Semrad, Endocrinologist, and John Linder, Social Worker, University of California Davis Medical Center, speakers at the free February meeting of the ThyCa Sacramento Valley Support Group, Karen Meeks Johnson, facilitator. h

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Low-Iodine Recipe of the Month
Contributed by Angie K.

Dark Chocolate Peanut Butter Cups

8 ounces unsweetened baking chocolate (Baker’s or Hershey’s—Baker’s comes in handy little one-ounce wrapped squares)
¼ cup shortening
½ teaspoon vanilla extract
1 ½ cup powdered confectionary sugar
6 teaspoons (halved) unsalted, natural peanut butter (I liked Teddie Old-Fashioned All-Natural Peanut Butter best because the consistency of it was malleable enough for pouring and you didn’t really have to stir it up)

Mini-muffin pan (*I did not use paper/foil liners, but I’m sure you could if you wanted to.)

Melt chocolate and shortening in microwave in a large bowl for 1 ½ minutes and stir smooth.
Add vanilla and stir.
Add powdered sugar, taking care to make sure mixture remains easy to stir. Too much sugar will make the chocolate too stiff to put in the muffin pan.
Using a teaspoon, spoon chocolate mixture into bottoms of muffin cups*, just covering the bottoms, depending on how thick you like them. Tap tin to settle chocolate flat. Next, spoon a half-teaspoon of peanut butter into the chocolate in each muffin cup and tap the tin again to settle the peanut butter into the chocolate.
Finally, go back and cover the peanut butter in each cup with the chocolate. I found it was easiest to spoon the chocolate on and then swirl it over with the underside of the spoon to cover the peanut butter.

Refrigerate until hardened (my husband and I kept watching the clock—it took about half an hour). The peanut butter cups will pop right out of the tin with a little gentle pressure from a butter knife. We found (after two or three) that if you let them sit for about two minutes after taking them out of the fridge, the chocolate will melt just enough so that you can bite in without breaking a tooth. Enjoy!

(There will be a little more than 12 mini-muffin cups’ worth of chocolate, so if you have another tin, you can make two or so more, depending on how thick you like the cups. I put the rest of my mixture into a small Dixie cup and mixed in about a teaspoon of peanut butter and make a little fudge-type creation that was quite tasty on its own.)

Thank you, Angie, 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 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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Press Room Gives Updates

Visit ThyCa’s Online Press Room for fact sheets, press releases, details about Thyroid Cancer Awareness Month, news about the 14th International Thyroid Cancer Survivors’ Conference in October, and more.

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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.