ThyCa NEWS NOTES – June 2013

In This Issue:

 

New Web Site Enhancements are Here!

We’re pleased to announce that our web site www.thyca.org has a new look and many enhancements. We’re keeping all our current content, and adding more. Visit our web site often for thyroid cancer news, events, and connections with others who are coping with this disease.

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Clinical Trial Shows Positive Results for Nexavar®

At a plenary session at the American Society of Clinical Oncology’s Annual Meeting in Chicago, Illinois, in June, positive results were presented from a Phase 3 Clinical Trial on the use of Nexavar® (sorafenib) tablets in thyroid cancer patients with differentiated thyroid cancer (papillary, follicular, variants) that had spread and did not respond to radioactive iodine.

The drug’s manufacturer, Bayer HealthCare Pharmaceuticals and Onyx Pharmaceuticals, Inc. reported that these results mean that a supplementary New Drug Application for sorafenib for the treatment of RAI-refractory differentiated thyroid cancer will be submitted in mid-2013 to the U.S. Food and Drug Administration, with additional submissions to follow globally.

Sorafenib is currently approved in the U.S. for the treatment of patients with unresectable hepatocellular carcinoma and for the treatment of patients with advanced renal cell carcinoma. It is also approved in 100 countries. 

More details about the clinical trial and its results are on our web site.

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Questionnaire Study Open for Medullary Thyroid Cancer (MTC) Survivors 

If you have Medullary Thyroid Cancer, you are being invited to take part online in a study of possible causes of MTC.

Researchers at Yale University School of Medicine and Yale School of Public Health in New Haven, CT, are enrolling participants.

The invitation letter for the studycan be reviewed here.

If you have MTC, please take part. If someone you know has MTC, please tell them about this study.

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Australia Adds ThyCa Support Group

Welcome to the new ThyCa Canberra, Australia, support group! Thank you to Leanne O’Connor for starting this group! Details and web pages for all the ThyCa Support Groups, in Australia, Canada, Costa Rica, and United States, are in the Support section of our website. 

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Physician Speaker in Rochester, New York on July 9

ThyCa Rochester, New York, presents Stephen R. Hammes, M.D., Ph.D., Chief of Endocrinology at University of Rochester Medical Center. The topics are Thyroid Replacement Therapy and Management; Recurrent Disease, on Tuesday, July 9, 2013, from 6 p.m. to 7:30 p.m. at Gilda’s Club Rochester. Free. Everyone interested is welcome!

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Dentist and Speech Specialist to Speak in Fresno, California, on July 13

ThyCa Fresno, California, presents two guest speakers July 13 from 10 a.m. to noon. Dr. Catherine Lambetecchio, a Fresno dentist, will speak about salivary, dry mouth, and dental issues. Debbie Moore, M.A., CCC-SLP, Speech Pathology Coordinator at San Joaquin Valley Rehabilitation Hospital, will speak about swallowing and voice changes related to thyroid cancer, thyroidectomy, and other thyroid issues. Free. Details on the group’s web page on our website in the Support section.

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789 Miles So Far, for Thyroid Cancer Awareness and Fundraising!

Congratulations and thank you, Jennifer Smart, for your terrific hike for Thyroid Cancer Awareness, as well as your fundraising for ThyCa’s thyroid cancer research grants, services, and support! Read Jennifer’s story of her 2,650-mile hike, & more, on our Rally for Research page. Find out how you can support Jennifer’s fundraising by donating to ThyCa.  

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Who’s coming to the Conference in September?

Already people from 18 states, Canada, & India have registered! We’ll soon start introducing speakers. For past years’ programs plus this year’s advance registration, hotel details, and more, visit our Conferences page. Hope you can join us in Philadelphia Sept. 27-29.

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26 Speakers Already Confirmed!

Come to 16th Annual International Thyroid Cancer Survivors’ Conference and learn from experts on every type and situation with thyroid cancer, as well as on coping with the emotional and practical impacts of living with thyroid cancer.

We’re excited to have already confirmed 26 speakers, from

  • Children’s Hospital of Philadelphia
  • Massachusetts General Hospital
  • Ohio State University
  • University of Pennsylvania
  • University of Texas M.D. Anderson Cancer Center
  • and numerous other leading thyroid cancer centers

Registration and hotel room reservations ($99 special rate) are now open. Come for 1, 2, or all 3 days of learning, discovery, sharing experiences, camaraderie, and new friendships!

And remember, scholarships are available on request to cover the registration fee (simply check the scholarship box on the form). Save the dates! We look forward to seeing you there. 

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Free Newsletters and Guestbook

We invite you to join our worldwide community. We want to help you stay connected and informed about thyroid cancer news. And, with your help, we’ll 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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Latest News From the Rally for Research

We’ll soon announce our newest Thyroid Cancer Research Grants. We are proud to have awarded more than $1 million in thyroid cancer research grants to researchers in 5 countries, thanks to your wonderful support!

ThyCa’s Research Grants are open to institutions and researchers worldwide, with grant recipients selected by an independent expert panel of the American Thyroid Association.

Read more here, and find out how you can help, on the official Rally for Research page.

Thank you!

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Low-Iodine Recipe of the Month
Contributed by Patricia W.

Vegetable Stock

1 Tablespoon olive oil
1 large onion, chopped into 1-inch cubes
2 ribs celery including leaves, cut into1-inch pieces
2 large carrots, cut into 1-inch chunks
1 bunch green onions, chopped
8 cloves of garlic, minced
8 sprigs fresh parsley
6 sprigs fresh thyme
2 bay leaves
1 teaspoon plain salt (non-iodized)
2 quarts water

Chop scrubbed vegetables. The greater the surface area the more quickly they will yield their flavor. Heat oil in a soup pot. Add the next 8 ingredients. Cook over high heat for 5 to 10 minutes, stirring frequently. Add plain salt and water and bring to a boil. Lower heat and simmer, uncovered for 30 minutes. Strain. Discard vegetables. Makes 1 1/4 quarts of stock. For variations, mushrooms, asparagus ends, corn cobs, fennel, bell pepper, pea pods, chard, celery root parings, basil, marjoram, and even potato peels may be used.

Patricia writes: “Several recipes in the Low-Iodine Cookbook call for vegetable stock, so having it prepared ahead is a real help. So much of the ready-to-use ones are high in sodium, and it might not be clear if they are seasoned with plain salt.”

Thank you, Patricia for this and your other great recipes! We will include them in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

Click here to 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.

To contribute your favorite recipe or tip, send it to recipes@thyca.org.

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World Thyroid Cancer Congress: ThyCa Will Be There!

The World Thyroid Cancer Congress opens on July 10 and continues through July 14. This important event educates physicians from around the world to Toronto, Ontario, Canada.

Bryan McIver, M.B., Ph.D., Gregory W. Randolph, M.D., Steven I. Sherman, M.D., and R. Michael Tuttle, M.D., ThyCa Medical Advisors, are organizers of this event. ThyCa will be there!

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New Videos with Marcia S. Brose, M.D., Ph.D. 

Three new videos will soon be available on ThyCa’s Video Page.

  • The Stigma of Being Diagnosed with Thyroid Cancer
  • Thyroid Cancer Introduction
  • Advances in Thyroid Cancer Care & Research

Dr. Brose is a ThyCa Medical Advisor.

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Know Someone (you?) Newly Diagnosed with Thyroid Cancer?

We have a free patient information packet and mail it to people around the world. It has the handbook Thyroid Cancer Basics, and much more, including some materials to share with your physician. To request your copy, or a copy for someone you know, go to our Free Packet page.

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Thyroid Cancer Awareness Month Coming Soon! 

Partner with ThyCa for Worldwide Thyroid Cancer Awareness Month in September. Get tools, tips, and free materials anytime. Help promote early detection, treatment, lifelong monitoring, and connections to free services, events, and more resources.

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Follow Us on Social Media

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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, in the time you give and in financial contributions, is what makes it possible to sustain, strengthen, and expand our services and outreach.

It only takes a minute to volunteer your time by e-mailing to volunteer@thyca.org or 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.

Thank you!

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About ThyCa NEWS NOTES and ThyCa
Copyright (c) 2013 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.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, and fundraising for thyroid cancer research.

ThyCa sponsors the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants.

Contact us for free materials and information. E-mail to 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.

You are invited to participate in a research study investigating possible causes for Medullary Thyroid Cancer. 

As you know, Medullary Thyroid Cancer (MTC), is a relatively rare type of Thyroid Cancer. 

Researchers at Yale University School of Medicine and Yale School of Public Health in New Haven, Connecticut are investigating some factors which may be involved in causing Medullary Thyroid Cancer, and are enrolling subjects in a study currently underway, the Thyroid Health Study.  

Because of the relative rarity of MTC, the researchers are particularly interested in including as many individuals as possible who have been diagnosed with Medullary Thyroid Cancer.

Study participation would involve filling out a questionnaire about some aspects of your environmental, occupational, dietary and medical history, and filling out a booklet asking questions about your usual diet.  You will also be asked to return a saliva specimen to be used for DNA analysis, using a container that will be mailed to you along with the other study materials.

There is no cost associated with participation, and you will not receive any compensation.  

Your participation is important in the continuing effort to find out how to prevent or reduce the occurrence of Medulllary Thyroid Cancer.

If you are interested in study participation, please e-mail your reply to the study coordinator, Helen Sayward at helen.sayward@yale.edu.  If you have any questions about the study, call (203) 764-9079, or toll-free at (866) 598-2775.  If you express interest in participating, a consent form for you to sign and return as well as other study materials will be sent to you.

Update: July 1, 2013  – Applications Submitted in U.S. and Europe for Nexavar® (sorafenib) for Treatment of Radioactive Iodine-Refractory Differentiated Thyroid Cancer

July 1, 2013 — Bayer HealthCare and Onyx Pharmaceuticals have submitted applications to the U.S. Food & Drug Administration and the European Medicines Agency for approval of Nexavar®  (sorafenib) for treating differentiated thyroid cancer (papillary, follicular, variants) that is locally advanced or metastatic and does not respond to radioactive iodine.

June 3, 2013 — At a plenary session at the American Society of Clinical Oncology’s Annual Meeting in Chicago, Illinois, positive results were presented from a Phase 3 Clinical Trial on the use of Nexavar® (sorafenib) tablets in thyroid cancer patients with differentiated thyroid cancer (papillary, follicular, variants) that had spread and did not respond to radioactive iodine.

The results will lead to regulatory submissions from the manufacturer to the U.S. Food and Drug Administration and to regulatory agencies globally.
The Phase 3 DECISION trial included 417 patients with locally advanced or metastatic differentiated thyroid cancer that did not respond to radioactive iodine. The trial was an international, multicenter, placebo-controlled study. The primary endpoint of the study was progression-free survival. Progression-free survival was evaluated by an independent radiological review committee, using Response Evaluation Criteria in Solid Tumors (RECIST).
Sorafenib significantly extended progression-free survival (PFS). The median PFS was 10.8 months among patients treated with sorafenib, compared to 5.8 months among patients receiving placebo. At the time of progression, patients had the option to cross over to open-label sorafenib at the discretion of the investigator. Median overall survival, a secondary endpoint of the trial, has not yet been reached in either arm of the study.
“While most patients with differentiated thyroid cancer are cured, there is a major treatment gap for patients whose cancer no longer responds to standard therapies,” said Marcia Brose, M.D., Ph.D., principal investigator of the DECISION trial, Assistant Professor in the Abramson Cancer Center and the Perelman School of Medicine at the University of Pennsylvania, and a Medical Advisor of ThyCa: Thyroid Cancer Survivors’ Association.
“The DECISION results demonstrate sorafenib’s ability to extend progression-free survival compared to placebo in these patients, potentially providing a new treatment option for these patients,” she added.
The drug’s manufacturer, Bayer HealthCare Pharmaceuticals and Onyx Pharmaceuticals, Inc. reported that these results mean that a supplementary New Drug Application for sorafenib for the treatment of RAI-refractory differentiated thyroid cancer will be submitted in mid-2013 to the U.S. Food and Drug Administration, with additional submissions to follow globally. Sorafenib is currently approved in the U.S. for the treatment of patients with unresectable hepatocellular carcinoma and for the treatment of patients with advanced renal cell carcinoma. It is also approved in 100 countries.
“In the past 30 years, there have been no new treatment options approved for patients with radioactive iodine-refractory differentiated thyroid cancer,” said Pablo J. Cagnoni, M.D., Onyx Pharmaceuticals Executive Vice President, Global Research & Development and Technical Operations, “We are pleased with the results of the DECISION study, which demonstrate sorafenib’s activity in patients who have no other treatment options.”
Thyroid cancer has become the fastest-increasing cancer in the world in recent years and is the sixth most common cancer in women. There are more than 213,000 new cases of thyroid cancer annually worldwide. While the majority of differentiated thyroid cancers are treatable, RAI-refractory locally advanced or metastatic disease is more difficult to treat and is associated with a lower patient survival rate.

In This Issue

 In Memory and Gratitude — Ernie Mazzaferri, M.D.

With deep sadness we write to tell you that Ernie Mazzaferri, M.D. has passed away. To thyroid cancer survivors and caregivers as well as his colleagues, he was a true leader, mentor, and friend.

He was a ThyCa medical advisor for many years. He gave generously of his time, wisdom, and encouragement, at the annual conferences, during and between sessions, often sitting in on additional sessions as an attendee, and through providing input and review for ThyCa print publications and the web site information.

A few of the tributes from ThyCa members:

  • “Ernie was more than a speaker at ThyCa conferences — he was a leader, a mentor, but mostly a FRIEND to all, all patients and caregivers, including the anaplastic thyroid cancer community. I was always impressed with session attendance when he spoke. The informality with which he conducted sessions lent itself to learning and growth on many levels for everyone privileged to be there!”
     
  • “He truly had passion about what he did, the patients he saw, and the doctors he mentored.”
     
  • “I remember him going through the ATA guidelines at one of the conferences–that was my introduction to him. And, then, patiently talking to the people who gathered around him wherever he went. He will be greatly missed.”
     
  • “He was always so kind, helpful, and understanding. I will miss him dearly.”
     
  • “What a wonderful man this great doctor was. I have never met anyone with such stature of greatness who was as humble of a servant. He was such an encouragement to me during the early years of my young son’s diagnosis. He was one of the best friends of ThyCa, one who advocated for anyone who was in need. He has left his mark on the hearts of so many.” 

ThyCa was proud to honor Dr. Mazzaferri last year at the research fundraising dinner/auction at the annual Conference.

“Ernie was a gentleman without peer, in addition to being a giant in the field of thyroid cancer and thyroid,” said Gary Bloom, ThyCa Executive Director and thyroid cancer survivor. “He worked with all of us as equals, whether we were medical professionals or patients. It was a pleasure to work with him.”

Our thoughts are with his family. We will miss him greatly.

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The AYA Thyroid Cancer Survivors’ Survey Seeks Your Input

This survey was developed by physicians from the University of California Los Angeles and University of Southern California, with ThyCa cooperating in this effort.

The goal is to learn more about the information and support needs of thyroid cancer survivors. The survey takes about 5 minutes. Click here to take the survey. Thanks in advance for taking part! To date, nearly 1,100 people have participated. Please take the survey so that all of us can be heard.

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Clinical Trials

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Hypoparathyroidism Patient/Family Conference June 6-8

On June 6-8, 2013. The nonprofit Hypoparathyroidism Association is holding its annual Conference, with leading experts speaking on the research advances and coping with this challenging disorder, which sometimes occurs as a complication of thyroid surgery. See the Hypoparathyroidism Association’s web site at www.hypopara.org for details. ThyCa is pleased to collaborate with the Hypoparathyroidism Association in our mutual goal of reducing the incidence of post-surgical hypocalcemia/hypoparathyroidism that occurs in some people with thyroid cancer.

In addition, Hypoparathyroidism Awareness Day worldwide is June 1, sponsored by the Hypoparathyroidism Association. in addition to their conference, information, and support services. We applaud their great efforts, and also want to note the informative website on hypoparathyroidism from NPS Pharmaceuticals at www.hypoparathyroidism.com. Some thyroid cancer patients have hypoparathyroidism.

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Free Thyroid Cancer Workshop in Maryland on June 22

Paul Ladenson, M.D., Endocrinologist at Johns Hopkins and Douglas Van Nostrand, M.D., Nuclear Medicine Physician at Washington Hospital Center are two of the medical professionals speaking at the Mid-Atlantic Thyroid Cancer Survivors’ Workshop on Saturday, June 22, in Silver Spring, Maryland. The workshop is free and open to everyone interested in thyroid cancer. More details on our Conferences and Workshops page.

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Free Cancer Rights Conference in Los Angeles on June 28

On Friday, June 28, 2013, the Cancer Legal Resource Center is sponsoring an informative conference with attorney speakers in Los Angeles, California. Learn from experts, and ask your questions about health insurance, employment, disability, and more. At University of Southern California Norris Comprehensive Cancer Center. For more information visit the web site of the Cancer Legal Resource Center (www.cancerrightsconference.org). ThyCa is pleased to partner in support of this event.

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Know Someone (you?) Newly Diagnosed with Thyroid Cancer?

We have a free patient information packet and mail it to people around the world. It has the handbook Thyroid Cancer Basics, and much more, including some materials to share with your physician. Request your copy, or a copy for someone you know.

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347 Miles So Far on the Pacific Crest Trail!

Congratulations and thanks, Jennifer, for your terrific hike for Thyroid Cancer Awareness, as well as fundraising for ThyCa’s services and thyroid cancer research grants! For Jennifer’s story of her 2,650-mile hike, & more, visit our Rally for Research page and find out how you can help by donating to ThyCa.

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May and June Golf Tournaments Raise Awareness and Research Funds

Watch our Rally for Research page for details.

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Videos Online

Watch videos of thyroid cancer survivors telling their stories on our Videos and PSA’s page.

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Make Connections and Learn the Latest at the Conference September 27-29

The 16th Annual International Thyroid Cancer Survivors’ Conference will bring leading experts to Philadelphia, Pennsylvania, September 27-29, for an unparalleled opportunity to learn the latest about every aspect of thyroid cancer care and research, from testing before diagnosis to care over the long term and the latest research for coping with complex and difficult situations with each type of thyroid cancer.

We’re excited about the tremendous lineup of medical experts you’ll meet at this important and unique event. They’re coming from M.D. Anderson Cancer Center, Massachusetts General Hospital, University of Pennsylvania, Children’s Hospital of Philadelphia, and numerous other leading thyroid cancer treatment and research programs.

Session leaders will include dozens of leading medical experts, plus coping-skills specialists, mental health professionals, attorneys, and more. We’re also pleased that the Hypoparathyroidism Association will again join us for sessions about coping with post-surgical hypocalcemia/hypoparathyroidism.

More than 100 session choices will offer a terrific variety of sessions and speakers at each time period each day. Read through past years’ program schedule, on our web site, for an idea of the amazing range of topics and experts.

Once again, we’re pleased to announce that we’ve arranged a special $99 hotel room rate for conference attendees at the Clarion Hotel Conference Center, our conference hotel.

Registration and hotel room reservations are now open. Come for 1, 2, or all 3 days of learning, discovery, sharing experiences, camaraderie, and new friendships!

And remember, scholarships are available on request to cover the registration fee (simply check the scholarship box on the form). Save the dates! We look forward to seeing you there. Check our Conferences and Workshops page for the latest details.

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Anaplastic Thyroid Cancer Handbook Now in Print, plus Downloadable

The free Anaplastic Thyroid Cancer (ATC) handbook is available on our Anaplastic Thyroid Cancer page, and in its print edition in English, and will soon be available in Chinese and Spanish. This 40-page manual focuses on the rarest and most aggressive thyroid cancer, diagnosed in about 1% of all people with thyroid cancer. Thanks very much to the numerous physician specialists, patients, and caregivers who developed and reviewed this valuable new resource.

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Webinar Library Offers Free Education from Your Home Every Day

Our one-hour Thyroid Cancer Webinars feature experts from Dana Farber Cancer Institute, Johns Hopkins, M.D.. Anderson Cancer Center, Memorial Sloan-Kettering Cancer Center, and many more leading centers. Each webinar is an hour long. Watch and listen wherever you live in the world. The free webinar library is available online on our Webinars page. You need to register to participate, but it’s a formality. Remember, ThyCa never shares, loans or gives out people’s contact information.

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Thank You to our Recent Guest Speakers

Thank you very much to the medical professionals who spoke and answered questions at the Midwest/Missouri Workshop, Midwest/Chicago Workshop, and support group meetings of ThyCa South Broward, Florida, Support Group, ThyCa Long Island, New York, and ThyCa Jersey Shore University Medical Center Support Group in New Jersey. Visit our Calendar and Support Groups pages for more events and guest speakers.

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ThyCa at OMG Cancer Summit for Young Adults

Thank you to Chris Prestano and Joel Amromin, ThyCa volunteers who represented ThyCa and handling our table at the OMG Cancer Summit for Young Adults in Las Vegas, Nevada, sponsored by the Stupid Cancer organization.. Chris facilitates the ThyCa Salt Lake City, Utah, Support Group, and Joel co-facilitates the ThyCa San Fernando Valley and ThyCa San Gabriel Valley, California, Support Groups.

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Promoting Awareness of All Thyroid Diseases

We were proud to support World Thyroid Day on May 25, focusing on every type of thyroid disease. We greatly appreciate the efforts in education on all thyroid diseases, by the American Thyroid Association, American Association of Clinical Endocrinologists, European Thyroid Association, and many more medical professional associations. You can help promote early detection of thyroid cancer by e-mailing us to ask for free Neck Check Cards (plus more materials), and by visiting our Raise Awareness page.

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Free Newsletters and Guestbook

We invite you to join our worldwide community. We want to help you stay connected and informed about thyroid cancer news. And, with your help, we’ll be there for every person affected by thyroid cancer. If you haven’t already signed up, we invite you to sign up on our Guestbook page today.  

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News From the Rally for Research

We have awarded more than $1 million in thyroid cancer research grants to researchers in 5 countries, thanks to your wonderful support!

ThyCa’s Research Grants are open to institutions and researchers worldwide, with grant recipients selected by an independent expert panel of the American Thyroid Association.

Read more here, and find out how you can help, on the official Rally for Research page.

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Low-Iodine Recipe of the Month

Contributed by Laura B.

Avocado Mousse: An Easy Dessert

  • Avocado
  • 1 Tablespoon sugar
  • 1/2 teaspoon vanilla extract

Blend the ingredients until smooth. Amounts can be adjusted according to personal taste.

Laura writes, “Years ago a friend made this for me and I found it delicious. I’m so thankful because otherwise I never would have thought of it.”

Thank you, Laura! We will include your recipe in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.

Free and Downloadable

Click here to 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.

To contribute your favorite recipe or tip, send it to recipes@thyca.org.

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Thyroid Cancer Awareness Month Coming Soon!

Partner with us for Worldwide Thyroid Cancer Awareness Month in September. Get tools, tips, and free materials anytime on our Awareness page.

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Follow Us on Social Media

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About ThyCa NEWS NOTES and ThyCa

Copyright (c) 2013 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. Each complete issue is also published on our Newsletters page.

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 non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, and fundraising for thyroid cancer research.

ThyCa sponsors the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants.

Contact us for free materials and information. E-mail to 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 web site.

Pfizer’s wholly owned subsidiary, King Pharmaceuticals LLC, has initiated a voluntary recall of the thyroid hormone Levoxyl.

The company also announced that Levoxyl may not become available until 2014.

In addition, the company’s letter stated:

“There is no need for patients to return or discard the medication they have, as they may continue to take the medication in accordance with their health care provider’s prescribed directions.”

In This Issue:

Thyroid Cancer Basics: Now in 3 Languages

This free 50-page handbook is now available in English, Chinese, and the new Spanish edition. Download this valuable resource from our home page (in the center box). Or, request the FREE print edition in English and Chinese— either an individual copy or in bulk for medical professionals to give to patients. The print version of the Spanish print edition is coming soon! We mail all our free materials anywhere in the world.

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Anaplastic Thyroid Cancer Handbook on the Web Site

The free Anaplastic Thyroid Cancer (ATC) handbook is available on www.thyca.org, and the print edition will soon be available to request in English, Chinese and Spanish. This 40-page manual focuses on the rarest and most aggressive thyroid cancer, diagnosed in about 1% of all people with thyroid cancer. Thanks very much to the numerous physician specialists, patients, and caregivers who developed and reviewed this valuable new resource.

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New Survey Seeks Patients’ Input on Information and Support

Now on our web site is the AYA Thyroid Cancer Survivors’ Survey. Physicians from the University of California Los Angeles and the University of Southern California developed the survey to learn about informational and support needs of thyroid cancer survivors during diagnosis, during treatment, and after.
ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to cooperate with the physicians in this survey. We invite your participation. The survey is anonymous. It should take less than 5 minutes to complete. Visit this page to take part.

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Meet Experts, Get Answers

  • Monday, May 6, 2013. Neptune, New Jersey. Peter Mencel, M.D. will speak about Novel Chemotherapies for Patients with Metastatic Disease at the free support group meeting of the ThyCa Jersey Shore University Medical Center Support Group. Details at the group’s web page.

  • Thursday – Saturday, June 6-8, 2013. Rockville, Maryland. Hypoparathyroidism Patient/Family Conference. Sponsored by the nonprofit Hypoparathyroidism Association. See www.hypopara.org for details. ThyCa is pleased to collaborate with the Hypoparathyroidism Association in our mutual goal of reducing the incidence of post-surgical hypocalcemia/hypoparathyroidism.

  • Saturday, June 22, 2013. The Mid-Atlantic Thyroid Cancer Survivors’ Workshop with physician speakers from Johns Hopkins, Washington Hospital Center, and more at Holy Cross Hospital, Silver Spring, Maryland. Register online in advance, or onsite at the workshop. Details on our Conferences page.

  • Friday, June 28, 2013. Los Angeles, California. Free Cancer Rights Conference. Learn from experts, and ask your questions about health insurance, employment, disability, and more. At USC Norris Comprehensive Cancer Center. Sponsored by the Cancer Legal Resource Center. ThyCa is pleased to partner in support of this event.

  • Every Day, Free one-hour Thyroid Cancer Webinars with experts from Dana Farber Cancer Institute, Johns Hopkins, M.D.. Anderson Cancer Center, Memorial Sloan-Kettering Cancer Center, and many more leading centers. The webinar library is available online on our website. Watch and listen wherever you live in the world.

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Latest Conference News: Save the Dates!

Registration and hotel room reservations are now open for the 16th Annual International Thyroid Cancer Survivors’ Conference, September 27-29, 2013 in Philadelphia, Pennsylvania.

We’re excited about the tremendous lineup of medical experts you’ll meet at this important and unique event. They’re coming from M.D. Anderson Cancer Center, Massachusetts General Hospital, University of Pennsylvania, Children’s Hospital of Philadelphia, and numerous other leading thyroid cancer treatment and research programs.

Session leaders will include dozens of leading medical experts, who will speak and answer your questions. It’s a terrific opportunity to learn the latest from experts, about all aspects of thyroid cancer care and research.

In addition, coping-skills specialists, mental health professionals, attorneys, and more will lead sessions. We’re also pleased that the Hypoparathyroidism Association will again join us for sessions about coping with post-surgical hypocalcemia/hypoparathyroidism. The weekend offers more than 100 session choices. Read through past years’ program schedule, on our web site, for an idea of the amazing range of topics and experts.

Come for 1, 2, or all 3 days of learning, discovery, sharing experiences, camaraderie, and new friendships!

Once again, we’re pleased to announce that we’ve arranged a special $99 hotel room rate for conference attendees at the Clarion Hotel Conference Center, our conference hotel.

And remember, scholarships are available on request to cover the registration fee (simply check the scholarship box on the form).  Save the dates! We look forward to seeing you there.

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Nine Reasons To Attend a Face-to-Face Support Group

ThyCa Local Support Groups meet every week, on both weekend days and weekday evenings. Local thyroid cancer support groups are terrific ways to meet and get to know others in your community while sharing experiences, coping tips, information about local resources in your community, and encouragement. Read more here.

Find a group here.

If you don’t see a group in your area, consider starting one. ThyCa can help you. Go to our Support Groups page for information.

More Free Support

Great thyroid cancer support and conversations are going on in the ThyCa/Inspire Online Thyroid Cancer Support Community, now with over 5,400 members! Find out about all our free local and online support groups and one-to-one support here. ThyCa also has 11 different online e-mail discussion groups on YahooGroups. For more information about them or to join, go to our Email Support page.  

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Jennifer’s Hike! 2,650 Miles To Raise Awareness and Funds

Jennifer Smart, thyroid cancer survivor, will walk the entire 2,650 miles of the Pacific Crest Trail (PCT) starting in late April to raise thyroid cancer awareness and funds for ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Why is Jennifer hiking for ThyCa?  “In 2006, as a newly diagnosed thyroid cancer patient,” she writes, “ThyCa: Thyroid Cancer Survivors’ Association was an incredibly valuable resource to me. Whether I was learning about this cancer on their website, attending a conference and meeting others, or downloading their low-iodine cookbook, ALL of it was FREE, and very helpful.”

Jennifer invites your support of ThyCa.  Read her story, see photos, and learn how you can donate in support of her wonderful efforts. 100% of all donations received go to ThyCa: Thyroid Cancer Survivors’ Association, Inc.  Her hike’s web site Journey Return has her story, photos, and a donation link.

Visit our News page (www.thyca.org/news/hiking031713/) and ThyCa’s Rally for Research page on www.thyca.org for an article with photos, plus an additional link to Jennifer’s web site Journey Return.

Thank you, Jennifer!

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Coping with Medullary Thyroid Cancer: A Patient’s StoryBy William Kenly

(Excerpted, with the author’s permission, from The Dogs of Cancer, Outskirts Press, 2013. The Conference and the Medullary group noted in this article are available through www.thyca.org)

“There are no extra pieces in the universe. Everyone is here because he or she has a place to fill, and every piece must fit itself into the big jigsaw puzzle.”   ~Deepak Chopra

My throat clenched tight, stopping my breath and my words and shocking my always-in-control brain.
Tears startled me as they came to my eyes either from the sting in my throat or from some deep well of emotions that I had inadvertently drilled into.

So unexpected!

Suddenly I was out of control.

I was uber conscious of the strangers in folding chairs sitting around me, watching me, and at the same time I was aware that something had wrenched control of my actions away from me. My throat was closed up and I struggled to pull in little gasps of breath.

I tried desperately, and failed, to force words out, unable to understand what was causing my systems to catastrophically

hut down, and I vaguely recognized emotion’s steel grip clamping my throat closed like a giant’s hand.
The supportive people around the room, and my wife sitting beside me, were patiently waiting for me to speak, to laugh, to say what was on my mind, but what I wanted to say was more than words, and the emotion came before the words, as I struggled to regain control. I made a feeble smile and swallowed hard and tried to suck air into my throat. They each looked at me expectantly, non-verbally offering me support and acceptance, and I saw in those eyes, a pure and simple understanding and acceptance.

They knew exactly what was happening to me.

Why was I choking, trying to say to them the same words that I had used a hundred times before in recent months to people even more precious to me than was this group of assorted middleaged strangers in this non-descript hotel conference room in some city half-way across the country?

I breathed deeply, trying to reset my runaway emotions that had unexpectedly bushwhacked me. The Command And Control part of my brain fought to clear my mind, to regain logistical control. Simultaneously the failure analysis function of my brain searched for a cause of this sudden and unexplained meltdown.
For the last three months, I had explained my cancer to my family, trying to strike a balance between saying that it was a serious and potentially fatal years-from-now form of thyroid cancer. And, at the same time, encouraging them to not worry too much right now as we gathered facts and learned how to deal with this. I had discussed it repeatedly and in many variations with my entire extended family, including my children, and with many friends and co-workers; to each audience, I made small adjustments, to reduce unnecessary worry.

It had started when I felt the bump in my neck, below my Adams Apple, a year earlier. It did not alarm me at the time, because my body grows bumps. I have always had warts, and when they were burned off and cut out, they reappeared a few years later. I had one bump along the side of my nose that was removed a total of five times over fifteen years, and it kept coming back. I had polyps when they did my 50-year-old colonoscopy.

My body grows bumps.

When I first heard the name, Medullary Thyroid Cancer (MTC), there in the Recovery Room after the Total Thyroidectomy, which had started out a few hours earlier as a Partial Thyroidectomy to remove a nodule they had biopsied earlier and called “probably benign,” how did it make me feel? Probably because I was still groggy from the anesthesia, maybe because the doctor was not saying that I should go home and get my affairs in order, or maybe because I had chewed on the concept for a month, it did not strike fear or panic into my stomach like I keep hearing is a common reaction to the spoken diagnosis of cancer.

And then over the coming days and weeks? Nope, no fear or panic then either, as there was a lot to learn, many more internet sites describing MTC than I would have imagined for a condition that I don’t remember ever even having heard mentioned in fifty-some years, and while the facts percolated through my analytical brain, I was too busy arming myself to react emotionally. I was on a mission and being on a mission always allowed me to control my emotions.

The difference today, in this hotel conference room, was that in this group of thyroid cancer survivors, I wasaccepted, understood and safe. I did not have to play a fatherly type or minimize the seriousness or my fear for my boss or my employees. I could let my guard down. I did not have to control myself or soften the words. I could be open and undefended.

I could cry.

And I did. I sobbed openly in front of everyone, and that was OK because they were each walking a very similar road.

I shocked myself that day when I realized the tidal surge of emotions that I had been keeping in the background.

In the weeks and months to come, as my knowledge base reached a critical mass, I began to see inquiries on the Yahoo Medullary site (Editor’s note: This free discussion and support group, sponsored by ThyCa, is available at www.thyca.org/sg/email/#medullary) and then on the FaceBook Medullary Thyroid Cancer page, from people even newer to the process than I was, and I began to feel strangely battle-tested.

One day I even posted a suggestion to a newbie on the site. Then I posted another. I began to realize how much information I had gathered that others were looking for. Then one day a newbie commented on one of my postings and thanked me for my “wise” advice. My ego liked that and I re-doubled my efforts to answer other people’s questions.

Galina and I went to the annual ThyCa Conference in Danvers, Massachusetts, the next year. One evening, as we were standing in the lobby, a young woman with a meddie throat scar, tapped me on the shoulder and introduced herself,

“I just wanted to say thanks for your postings on the ThyCa site. They are thoughtful and full of hope, and I just had to tell you how much they have meant to me.”

Over the next few years, this camaraderie and this new mission helped me to heal.

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Looking for a Thyroid Cancer Specialist?

We’ve got helpful links. Also, page 50 of Thyroid Cancer Basics has tips on finding the right doctor for you. This free handbook is downloadable from our web site, and is also available free by mail.

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Low-Iodine Recipe of the Month
Contributed by Amanda F. of Ohio

Rosemary Garlic Roasted Potatoes

4-6 Potatoes, peeled and chopped into 1-inch cubes
3 Cloves Garlic, chopped finely
1/4 Cup Olive Oil
1 Tablespoon Dried Rosemary
Noniodized Salt (Free Flowing) and Black Pepper to taste

Preheat oven to 400 degrees F. 

Peel and chop potatoes and garlic. Add all ingredients to a large Ziplock bag and toss to coat evenly.  Spread potatoes in a single layer on a large cookie sheet. 

Bake at 400 degrees F for about 30 minutes, or until potatoes are lightly browned and tender.  It helps to stir them once or twice while baking so they cook evenly. 

I used the leftovers to make a “hash,” with grilled chicken, and sauteed bell peppers, onions, and mushrooms.

Amanda writes, “First, I want to say what an incredible resource your cookbook was for me while I was on the low iodine diet.  I probably wouldn’t have made it through without it!  It also helped me learn to adapt my own recipes to be low iodine, as well.

“Since I found it to be so helpful, I wanted to submit one of the recipes that I prepared often while on the diet. Again, thank you for your cookbook, and what you continue to do for Thyroid Cancer Survivors.” 

Thank you, Amanda! We will include your recipe 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:

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.

To contribute your favorite recipe or tip, send it to recipes@thyca.org.

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Free Newsletters and Guestbook

We invite you to join our worldwide community. We want to help you stay connected and informed about thyroid cancer news. And, with your help, we’ll 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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News From the Rally for Research

We support thyroid cancer research, and have awarded more than $1 million in thyroid cancer research grants to researchers in 5 countries thanks to your support!

ThyCa’s Research Grants are open to institutions and researchers worldwide, with grant recipients selected by an independent expert panel of the American Thyroid Association.

Read more here, and find out how you can help, on the official Rally for Research page.

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Partner in Thyroid Cancer Awareness; Get Free Materials Anytime

All of us are coping with thyroid cancer— as a survivor, a caregiver, a medical professional, or a friend. All of us are committed to greater awareness about thyroid cancer.

Four easy ways to help the next person:

  1. Get free materials from ThyCa and keep them on hand. Be on the alert for opportunities to tell your story, share materials, or connect people with ThyCa’s free services, events, and resources when someone mentions thyroid cancer.
  2. Download this flyer: Three things to tell your friends about thyroid cancer: www.thyca.org/wp-content/uploads/legacy/tellfriends.pdf. This plus many more free flyers are downloadable on the Raise Awareness page.
  3. Invite your organization to partner with ThyCa in the worldwide Thyroid Cancer Awareness Month in September. Get tips and tools for helping, on the Awareness Month page: www.thyca.org/how-to-help/awareness/
  4. Tell your doctors we’re happy to send them free materials for their patients. Direct them to this page www.thyca.org/medical-professionals/md-intro/ to request quantities of our free materials for all of their patients. These include: 
    – Thyroid Cancer Basics Handbooks
    – Fine Needle Aspiration Booklets 
    – Low-Iodine Cookbooks 
    – Wallet Cards 
    – Patient Services Brochures 
    – Thyroid Cancer Awareness Brochures 
    – Neck Check Cards 
    – Support Group and Conference Flyers, & more 
    – Also available, the Fine Needle Aspiration Procedure Manual for Physicians

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About ThyCa NEWS NOTES and ThyCa
Copyright (c) 2013 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.

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: Amanda F., Leah Guljord, William Kenly, Pat Paillard, Barb Statas, Cherry Wunderlich, and Gary Bloom.

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 non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, and fundraising for thyroid cancer research.

ThyCa sponsors the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants.

Contact us for free materials and information. E-mail to 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. 

In late April 2013, Jennifer Smart, thyroid cancer survivor, will begin hiking the Pacific Crest Trail (PCT) to support thyroid cancer awareness and raise funds for ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Jennifer plans to hike an average of 20 miles a day for 4-5 months. The Pacific Crest Trail is a 2,650-mile scenic trail that runs from Mexico to Canada through California, Oregon, and Washington.

“In 2006, as a newly diagnosed thyroid cancer patient,” Jennifer writes, “ThyCa: Thyroid Cancer Survivors’ Association was an incredibly valuable resource to me. Whether I was learning about this cancer on their website, attending a conference, or downloading their low-iodine cookbook, ALL of it was FREE.”

In 2009, Jennifer hiked this trail, she writes, “in part, to recover from my thyroid cancer. It was physically and mentally challenging but the toil and fatigue were well worth the joy experienced, friends made and vistas seen.”

“Hiking the PCT was a pivotal moment in my life thatprovided a deep and profound perspective of the world in which we all live. Similarly, being a cancer survivor provides a lens through which life is viewed differently.”

Jennifer is dedicating her 2013 hike to raising thyroid cancer awareness and resources for past, present and future thyroid cancer patients. She seeks donations, and 100% of donations received go to ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Visit Jennifer’s web site Journey Return to learn more about Jennifer, her hike, and how you can support her efforts.

Thank you, Jennifer!

The supply of Levoxyl, one of the brands of the thyroid hormone levothyroxine, has recently been in the news. The pharmaceutical company Pfizer reports that it has a backorder for all strengths of Levoxyl at this time. Pfizer is working closely with the U.S. Food and Drug Administration (FDA) to address this situation. It will resume shipments of Levoxyl as soon as possible.

In This Edition:

Anaplastic Thyroid Cancer Handbook on the Web Site

The free handbook Anaplastic Thyroid Cancer (ATC) is available on www.thyca.org. This 40-page manual focuses on the rarest and most aggressive thyroid cancer, which is diagnosed in about 1% of all people with thyroid cancer.

Thanks very much to the numerous physician specialists, patients, and caregivers who developed and reviewed this valuable new resource.

This ATC publication explains how ATC is diagnosed and managed, critical decisions patients and caregivers need to consider, coping and support, communicating with the medical team, sources of further information, and much more.

It also tells how to join ThyCa’s free ATC E-Mail Support Group. This online group began in 1997. It is a place for sharing experiences, and giving and receiving emotional support and understanding from other families coping with ATC. Hundreds of ATC survivors and their caregivers participate in this e-mail group with the goal of making sure that everyone facing an ATC diagnosis will have the help of others coping with the same experience.

Download the Anaplastic Thyroid Cancer Handbook from the home page www.thyca.org. Soon individuals and medical professionals will be able to request FREE copies of the print edition through our web site. We mail all our free materials anywhere in the world.

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Levoxyl Supply News

The supply of Levoxyl, one of the brands of the thyroid hormone levothyroxine, has recently been in the news. The pharmaceutical company Pfizer, maker of Levoxyl, reports that it has a backorder for all strengths of Levoxyl at this time. Pfizer is working closely with the U.S. Food and Drug Administration (FDA) to address this situation. Pfizer will resume shipments of Levoxyl as soon as possible.

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Spring Meetings: Meet Experts, Get Answers to your Questions

  • Saturday, April 6, 2013. The Chicago/Midwest Thyroid Cancer Survivors’ Symposium with Physician Speakers. At the Robert H. Lurie Medical Research Center at Northwestern University, 303 East Superior Street, Chicago, Illinois.  Details and free registration are now available at www.thyca.org/support/conferences/
  • Saturday, April 13, 2013. In Kansas City, the Missouri/Midwest Thyroid Cancer Survivors’ Workshop will have Physician Experts, roundtables, plus free neck ultrasounds. At St. Joseph Medical Center, Community Education Wing, 1000 Carondelet Drive, Kansas City, MO. Get details and register online at www.thyca.org/support/conferences/
  • Sunday, April 14, 2013. Long Island, New York. Donald Margouleff, M.D., Nuclear Medicine Physician and ThyCa Medical Advisor, will be the guest speaker at the ThyCa Long Island free support group meeting. Details at the group’s web page at www.thyca.org/sg/ny_manhasset.
  • Monday, May 6, 2013. Neptune, New Jersey. Peter Mencel, M.D. will speak about Novel Chemotherapies for Patients with Metastatic Disease at the free support group meeting of the ThyCa Jersey Shore University Medical Center Support Group. Details at the group’s web page at www.thyca.org/sg/nj_neptune
  • Saturday, June 22, 2013. The Mid-Atlantic Thyroid Cancer Survivors’ Workshop with physician speakers at Holy Cross Hospital, Silver Spring, Maryland.
  • Every Day, Free one-hour Thyroid Cancer Webinars with experts, available online on www.thyca.org. Watch and listen wherever you live in the world.

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Conference Preview: Save the Dates!

We hope to see you in Philadelphia, Pennsylvania, at the 16th Annual International Thyroid Cancer Survivors’ Conference, September 27-29, 2013.

We’re excited about the tremendous lineup of medical experts you’ll meet at the conference. They’re coming from M.D. Anderson Cancer Center, Massachusetts General Hospital, University of Pennsylvania, Children’s Hospital of Philadelphia, and numerous other leading thyroid cancer treatment and research programs.

This unique event features dozens of leading experts, plus coping-skills specialists, survivors/caregivers with all types of thyroid cancer, and more.

We’ll have more than 100 session choices: expert presentations, question and answer sessions, coping skills workshops, and peer-support roundtables.

Come for 1, 2, or all 3 days of learning, discovery, sharing experiences, camaraderie, and new friendships!

Once again, we’re pleased to announce that we’ve arranged a special $99 hotel room rate for conference attendees at the Clarion Hotel Conference Center, our conference hotel.

And remember, scholarships are available on request to cover the registration fee (simply check the scholarship box on the form). The registration form, hotel information, transportation directions, and more, are now on the web site.

Save the dates! We look forward to seeing you there. www.thyca.org/support/conferences/

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Is there a Face-to-Face Support Group Near You?

Local thyroid cancer support groups are terrific ways to meet and get to know others in your community while sharing experiences, coping tips, information about local resources in your community, and encouragement.

Numerous groups meet every week. See if there is a group in your area by looking at www.thyca.org/sg/.

If you don’t see a group in your area, consider starting one.ThyCa can help you. Go to www.thyca.org/sg/ for information.

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Jennifer’s Hike! 2,650 Miles To Raise Awareness and Funds

Hiking 20 miles a day, Jennifer Smart, thyroid cancer survivor, will soon start walking the entire 2,650 miles of the Pacific Crest Trail (PCT), to raise thyroid cancer awareness and funds for ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Jennifer plans to set off on her amazing trek in late April. She’ll hike the scenic trail from Canada to Mexico through the states of Washington, Oregon, and California. Her entire journey will take four to five months. She’ll provide us online updates, throughout her journey.

Why is Jennifer hiking for ThyCa?

 “In 2006, as a newly diagnosed thyroid cancer patient,” she writes, “ThyCa: Thyroid Cancer Survivors’ Association was an incredibly valuable resource to me. Whether I was learning about this cancer on their website, attending a conference and meeting others, or downloading their low-iodine cookbook, ALL of it was FREE, and very helpful.”

When Jennifer first hiked the Pacific Crest Trail, in 2009, she writes, it was “in part, to recover from my thyroid cancer. It was physically and mentally challenging but the toil and fatigue were well worth the joy experienced, friends made and vistas seen.”

“Hiking the PCT was a pivotal moment in my life that provided a deep and profound perspective of the world in which we all live. Similarly, being a cancer survivor provides a lens through which life is viewed differently.”

Jennifer is dedicating her 2013 hike to raising thyroid cancer awareness and resources for past, present and future thyroid cancer patients.

Jennifer invites support and donations, and 100% of all donations received go to ThyCa: Thyroid Cancer Survivors’ Association, Inc.  Her hike’s web site Journey Return (http://pctlionheart.wordpress.com/  ) has her story, photos, and a donation link.

Visit our News page and the Rally for Research page for a link to an article with photos, plus an additional link to Jennifer’s web site Journey Return.

Read Jennifer’s story and her plans, and how you can donate in support of her wonderful efforts.

Thank you, Jennifer!

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Free Newsletters and Guestbook

We invite you to join our worldwide network. We want to help you stay connected and informed about thyroid cancer news. And, with your help, we’ll be there for every person affected by thyroid cancer. If you haven’t already signed up, we invite you to sign up today: www.thyca.org/support/guestbook/ 

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In Memory of Jo Walker

We are saddened to tell you that Jo Walker of Arizona, longtime ThyCa volunteer and board member, passed away on January 31, 2013.

Jo was actively involved in ThyCa from its beginnings.  She had been diagnosed with Hurthle cell thyroid cancer in 1994.

Jo attended her first annual Conferences in 2002, and attended everyone thereafter. She helped facilitate conference roundtables on coping with side effects of the new targeted therapies, as well as coping through humor. Our web site features one of her humorous poems. Jo served on the committees for publications and outreach, and as leader of ThyCa’s E-Mail Response Team, communicating and making friends around the world.

She also served many years on ThyCa’s Board of Directors, including service as Recording Secretary.  In honor and recognition of Jo’s dedicated service, ThyCa has named her Board Member Emeritus.

Jo requested that donations be made to ThyCa in her memory in lieu of flowers. If you would like to make a memorial donation, visit www.thyca.org/donations/ —

Jo will be greatly missed.

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Support ThyCa’s Rally for Research

Find out more about ThyCa’s Thyroid Cancer Research Grants, open to researchers anywhere in the world. More thyroid cancer research is urgently needed.

Find out how you can help. Visit our Rally for Research page.

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Low-Iodine Recipe of the MonthContributed by Tim F.

 Easy 40-minute Hamburger/Sandwich Buns

1 Tablespoon active dry yeast
½ Cup plus 1 Tablespoon warm water (105 to 110 degrees F)
2 Tablespoons vegetable oil
2 Tablespoons sugar
2 Tablespoons carton egg whites
½ Teaspoon salt
1 ½ cup all-purpose flour

Preheat oven to 425 degrees F. Line two baking sheets with parchment paper.

In a large bowl, add water and dissolve yeast. Add sugar, then oil, and let sit five minutes. (If yeast does not bubble and form “gunk” on the surface after 5 minutes, discard and try again.)

Add egg whites and salt, then flour. Mix until combined and the dough is slightly sticky. Scrape out onto a clean, floured surface and knead it, adding small amounts of flour if needed, until it no longer sticks to your hands.

Divide into quarters, then halve those pieces (or quarter them for slider buns!). Leave square, or roll into balls and flatten for round buns.

Transfer to cookie sheets, placing at least 2 inches apart, and cover with a paper towel. Allow dough to rise for a half-hour on the stove top, and then bake for 8-10 minutes at 425 degrees F.

For a denser bun, reduce the rise time and use a bit more oil. There are many ingredient substitutions to make these very versatile: replace all-purpose flour with wheat flour, or use bread flour and olive oil for a more Italian-style roll.

Tim writes, “First, thank you so much for the amazing cookbook. I am on my second low-iodine diet (thankfully this time for my one-year scan!) and I wanted to send along a recipe that I hope will help some folks. I noticed the cookbook has a lot of great bread recipes, and I had been making LID-safe bread in a machine, but I had a desire for hamburger buns to get that feeling of normalcy instead of eating a plain burger or a piece of chicken. They also make a great breakfast toasted with jelly. I know a lot of people have a hard time with yeast, but these are super-easy and a great introduction to yeast breads.”

Thank you, Tim! We will include your recipe 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:

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.

To contribute your favorite recipe or tip, send it to recipes@thyca.org.

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Get Involved

All of us are coping with thyroid cancer— as a survivor, a caregiver, a medical professional, or a friend. All of us are committed to greater awareness about thyroid cancer.

Three easy ways to increase awareness are:

  • Always be on the alert for when someone mentions thyroid cancer. When that happens, mention ThyCa: Thyroid Cancer Survivors’ Association, Inc. and our wide array of free support services, materials, and events, as well as our research fundraising and grants, open to researchers anywhere in the world.
  • Ask us to mail you a small or large supply of ThyCa and thyroid cancer awareness materials to bring to your doctors, and to carry with you to share with others you meet.
  • Add a simple signature to all your e-mails, such as:
  • Free education, support services, and awareness materials
    • September is Thyroid Cancer Awareness Month, sponsored by ThyCa
    • 16th International Thyroid Cancer Survivors’ Conference — Philadelphia, Pennsylvania September 27-29, 2013
    • Details on our website

These events and services are open to everyone, everywhere in the world!

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Latest Milestones

We’re excited to report some of the latest milestones:

  • More than 5,000 in our ThyCa Inspire Online Support Community
  • More than 1,000 followers on Twitter
  • Over 6,900 friends on Facebook
  • More than 13,000 in our 12 E-mail listserv support groups
  • More than 30,000 receive our newsletter!
  • More than 500,000 website hits each month

Tell others about these and more great opportunities for connections, learning, and support, plus our many other free resources and opportunities. They’re all conveniently available at www.thyca.org

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Follow us on Facebook and Twitter

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About ThyCa NEWS NOTES

Copyright (c) 2013 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.

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: Tim F., Leah Guljord, Pat Paillard, Barb Statas, Cherry Wunderlich, and Gary Bloom.

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 non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, and fundraising for thyroid cancer research.

ThyCa sponsors the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants.

Contact us for free materials and information. E-mail to 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.

In This Issue:

New Free Handbook on Rare Anaplastic Thyroid Cancer

The Preview Edition of the new free handbook Anaplastic Thyroid Cancer is now available on www.thyca.org. This 40-page manual focuses on the rarest and most aggressive thyroid cancer, which is diagnosed in about 1% of all people with thyroid cancer.

The handbook was developed by numerous physician specialists, together with anaplastic thyroid cancer (ATC) survivors and caregivers.

It explains ATC diagnosis and management, critical decisions for patients and caregivers, coping and support, communicating with the medical team, sources of further information, and more. It also explains how to join ThyCa’s free ATC E-Mail Support Group. This online group began in 1997. It is a place for sharing experiences, and giving and receiving emotional support and understanding from other families coping with ATC.

Read and download the Anaplastic Thyroid Cancer Handbook. The full handbook will be available to request for free in its print edition soon, to individuals as well as to medical professionals. We mail it and our other free materials anywhere in the world.

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New Spirit Items Raise Awareness and Funds

Beautiful new hand-knitted hats and socks created by a thyroid cancer survivor, and the new notecards created by a caregiver, are now available from ThyCa, to help raise funds for our support services, outreach and awareness campaigns, and thyroid cancer research. Our many other Spirit Items include awareness wristbands, awareness pins, bracelets, shirts, tote bags, and more.

You’re invited to wear, use, and share these Spirit items. They also make wonderful gifts. Visit our Spirit Items page for photos and to place an order using our secure online form, or by mail.

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Seminars, Workshops, and the Conference on Thyroid Cancer

  • Visit our Calendar of Events at www.thyca.org/calendar.htm to find out more about Seminars, Workshops, the International Conference, and more!

  • The Chicago/Midwest Thyroid Cancer Survivors’ Workshop with Physician Speakers. At the Robert H. Lurie Medical Research Center at Northwestern University, 303 East Superior Street, Chicago, Illinois. Details will be added to the Conferences/Workshops page.

  • The Missouri/Midwest Thyroid Cancer Survivors’ Workshop with Physician Speakers. At St. Joseph Medical Center, Community Education Wing, 1000 Carondelet Drive, Kansas City, MO. Details will be added to the Conferences/Workshops page.

  • The Mid-Atlantic Thyroid Cancer Survivors’ Workshop with physician speakers will be held in the DC/Maryland/Northern Virginia area on a spring date to be announced.

  • Save the dates for the Conference! We’d love to see you in Philadelphia at the 16th Annual International Thyroid Cancer Survivors’ Conference, September 27-29, 2013. 

    T his unique event features dozens of leading experts, plus coping-skills specialists, survivors/caregivers with all types of thyroid cancer, & more. 

    Come for 1, 2, or all 3 days of learning, discovery, sharing experiences, camaraderie, and new friendships! Scholarships are available on request to cover the registration fee. Save the dates! www.thyca.org/support/conferences/

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My StoryBy Beena P.

Summer of 2010 was a particularly noteworthy one in my book. On the brink of starting a graduate master’s program for the career of my dreams, I vacationed in Montreal with close friends. There, I noticed I was quite fatigued. I went to see my physician for a routine physical exam.

The internist palpated my thyroid and stated that it was slightly enlarged. I was given the option of getting a thyroid ultrasound if I desired. Luckily for me, my health insurance covered the costs so I chose to have it done.

One thing led to another and then, I was having a fine needle aspiration biopsy in a nearby hospital. I was mildly transitioning into more clinical-based classes of my second semester when I received a phone call that would change my life forever. I was notified that the thyroid nodule detected was cancerous. 
My heart sank amid hearing the word “cancer.” I was told by the doctoral fellow that this was one of the most treatable types of cancer so I should consult with the head and neck surgeon immediately. When the surgeon stated that my case was malignant, I could not help but sob. It was one disconcerting piece of news after another.

Henceforth, the preparation began for scheduling the surgery, undergoing it, and being placed on thyroid medication afterward. The surgeon joked that most patients experience hoarseness following a thyroidectomy but I was talking way too much after mine. I did, however, experience enormous amounts of fatigue for months after. I also suffered with decreased concentration and “sleepy eyes” whenever I was out with my friends past eight o’clock at night. Despite my thyroid levels being regulated, it took me over several months to gain energy similar to the charisma I once encompassed prior to the surgery. Each step of improvement allowed me to sense that there were endless possibilities and timeless beauty in all the small things of life.

Many will say that thyroid cancer is a “good cancer” but the truth is, no one wants any type of cancer. Talking about my experience was the entryway to more defined relationships. Having this obstacle allowed me to empathize more, which allowed me to be more connected with people. Educating others about living this “aftermath” of thyroid cancer has allowed me to express what it is like to many people previously unknowledgeable about such a thing as thyroid cancer.

My positive stance is reflected by how thyroid cancer has molded me into being more grateful and appreciative for what I do have.

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Rare Disease Day
Rare Disease Day is sponsored by the National Organization for Rare Disorders (www.rarediseases.org). ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to partner in support of this important observance, February 28, 2013. Medullary thyroid cancer, Anaplastic Thyroid Cancer, and some variants of papillary and follicular thyroid cancer are rare diseases.

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Support Group News

The local thyroid cancer support groups are terrific ways to meet and get to know others in your community while you share experiences, coping tips, information about local resources in your community, and encouragement.

The newest group meets in Sal Lake City, Utah, on Saturday, February 16, and will hold regular meetings on the third Saturday of each month. Thank you support group facilitator and long-time ThyCa volunteer, Chris Prestano!

Thank you also to Rev. David Cotton for the seminar on Coping with Thyroid Cancer with at the February meeting of the ThyCa Jersey Shore University Medical Center Support Group.

Numerous local support groups meet every week. Check out the meeting details, contact information for the facilitators, and more.

Want to help start a group in your community? ThyCa can help you. See the same support group’s page for contact information.

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In Memory of Michael Karl, M.D.

Patients, caregivers, and the medical community lost a distinguished clinician and wonderful friend last year, Michael Karl, M.D., Endocrinologist, of Miami, Florida. Dr. Karl gave generously of his time in support of the ThyCa South Florida Support Group and thyroid cancer patients and caregivers everywhere. He was a speaker at the 9th International Thyroid Cancer Survivors’ Conference. We will miss him.

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The 5th Most Common

Thyroid cancer is the 5th most common cancer in women, and it’s also the fastest increasing cancer in incidence in both women and men. Read more about the 2013 statistics, and promote early detection through neck checks! Get our free materials. Visit our websiteto find out more.

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Get Involved!

All of us are coping with thyroid cancer— as a survivor, a caregiver, a medical professional, or a friend. All of us are committed to greater awareness about thyroid cancer.

Three easy ways to advance the cause are:

1. Always be on the alert for when someone mentions thyroid cancer. When that happens, mention ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) and our wide array of free support services, materials, and events.

2. Ask us to mail you a small or large supply of ThyCa and thyroid cancer awareness materials to bring to your doctors, and to carry with you to share with others you meet

3. Add a simple signature to all your e-mails, such as:

– Free education, support services, and awareness materials
– September is Thyroid Cancer Awareness Month, sponsored by ThyCa
– 16th International Thyroid Cancer Survivors’ Conference — Philadelphia, Pennsylvania September 27-29, 2013
– Details at swww.thyca.org

We recommend this format as it highlights the numerous services available, as well as Thyroid Cancer Awareness Month, and the International Thyroid Cancer Survivors’ Conference. We also emphasize that this unique conference is about and for all patients with thyroid cancer, wherever they are, and regardless of whether they are a member of the ThyCa organization. These events and services are open to everyone!

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Free Newsletters and Guestbook

We invite you to join our worldwide network. We want to help you stay connected and informed about thyroid cancer news. And, with your help, we’ll be there for every person affected by thyroid cancer.

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

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

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Follow us on Facebook and Twitter

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Low-Iodine Recipe of the MonthContributed by Michele M. of Nova Scotia, Canada

Chia Muffins

1 Cup whole grain oat flour
1/2 Cup whole grain barley flour
1/2 Cup whole grain brown rice flour
2 teaspoons baking powder
1/2 teaspoon baking soda
1 teaspoon cinnamon
1/2 teaspoon coarse salt
1.5 Cups chia gel (mix 1/3 cup chia seeds with 2 cups water makes chia gel)
½ Cup almond milk 
2 teaspoons vanilla extract
1/3 Cup honey
Optional: fruits, nuts, additional flavors**

Directions
In a large mixing bowl, add oat, barley, & brown rice flours, chia seeds, baking powder, baking soda, cinnamon, and salt; whisk until well combined. In separate medium bowl, combine buttermilk, water, vanilla & honey; whisk to combine. Add wet ingredients to dry ingredients; stir just until moistened. Don’t overmix; batter should be lumpy.

Let batter rest at least 30 minutes before baking. Or, cover batter and refrigerate overnight and as long as 5 days. Recipe may be doubled or tripled.

To bake, preheat oven to 350 degrees F. Grease or spray muffin cups with nonstick cooking spray. Without remixing the batter, spoon or scoop it into muffin cups, filling 2/3 full. Bake 20-23 minutes until a toothpick inserted in the center of muffin comes out clean. Let rest 5 minutes before removing from pan to cooling rack.

To microwave a single muffin, use a silicone muffin cup, or glass custard cup, ramekin, or small mason jar. If using glass, coat with cooking spray. Fill 1/2 to 2/3 full with batter, and microwave for 50-65 seconds (microwave times will vary). To microwave multiple muffins at one time, increase the cooking time 20-30 seconds for each additional muffin.

**To add fruits, nuts, and flavors. 
May use fresh, frozen, canned, or dried fruit. Blot off juice or liquid before adding to muffin layers. Fill muffin cups 1/3 full with batter, sprinkle on fruit or other flavors; top with batter to 2/3 full and add more flavors on top, pressing them into the batter slightly. Bake 22-24 minutes until a toothpick inserted in the center of muffin comes out clean. Let rest 5 minutes before removing from pan to cooling rack.

Michele writes, “First wanted to thank you for the Low-Iodine Cookbook. I was diagnosed in 2011 and am back on my low- iodine diet the second time, awaiting my 6-month follow up scan. Your cookbook has been a lifesaver! Here is a great muffin recipe I’d like to share with your readers. They are very moist and freeze very well.

Thank you, Michele! We will include your recipe 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:

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.

To contribute your favorite recipe or tip, send it to recipes@thyca.org. 
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Are You a ThyCa Member? You’re Invited To Join Us!

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

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

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

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, in the time you give and in financial contributions, makes it possible to sustain, strengthen, and expand our services and outreach.

It only takes a minute to volunteer your time by e-mailing to volunteer@thyca.org or 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.

Thank you!

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About ThyCa NEWS NOTES
Copyright (c) 2013 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. Each ThyCa News Notes complete issue is also published on this web page: www.thyca.org/news/newsletters/.

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, Michele M., Beena P., Pat Paillard, Barb Statas, Cherry Wunderlich, and Gary Bloom.

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 non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, and fundraising for thyroid cancer research.

ThyCa sponsors the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants.

Contact us for free materials and information. E-mail to 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 visi tour website.