ThyCa News Notes – April 2014

Contents

Thyroid Cancer Treatment Options Explained in Free Handbooks 

Three free handbooks, Thyroid Cancer Basics, Medullary Thyroid Cancer, and Anaplastic Thyroid Cancer, are great places to start learning about each type of thyroid cancer, treatments, and testing. 

Each handbook, 40-60 pages long, is packed with helpful information, whether you or someone you know are newly diagnosed, in follow-up and testing, or a long-term survivor.

Our medical advisors, additional medical specialists, as well as patients and caregivers coping with each type of thyroid cancer, provided review and input—thank you everyone! 

Either download a handbook from our home page, or ask us to mail you a copy by filling out the Guestbook Form or e-mailing to thyca@thyca.org.

We also mail bulk copies free of charge to medical professionals to give to their patients. We mail them to people around the world.

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Serving People in 113 Countries 

ThyCa is proud to report that our services have grown to reach people in 113 countries. 

In addition to the United States, the 10 countries where we’re serving the most people are Australia, Canada, China, India, Ireland, Malaysia, New Zealand, Philippines, South Africa, and United Kingdom. 

Thank you to everyone who is helping to connect people worldwide with ThyCa’s free education, support services, publications, special events, and thyroid cancer research fundraising and research grants. 

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Thyrogen Update: FDA Approves Widened Use 

The U.S. Food and Drug Administration (FDA) has approved the use of Thyrogen® (thyrotropin alfa for injection, manufactured by Genzyme), for a widened dose range of radioactive iodine (RAI) when used for thyroid remnant ablation after surgery for papillary or follicular thyroid cancer.  

In the FDA’s previous Thyrogen approval for thyroid remnant ablation, the amount of radioiodine prescribed was fixed at 100 mCi (millicuries). Now, physicians may select a dose from the range of 30 to 100 mCi when Thyrogen is used to prepare for the RAI.  

ThyCa has posted a summaryon our website and will add more information, linked from the home page, as well as in the Thyrogen section of our Links page.
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European Commission Approves Cometriq®

 In late March 2014, the European Commission approved Cometriq® (cabozantinib), made by Exelixis, Inc. for the treatment of adult patients with progressive, unresectable locally advanced or metastatic medullary thyroid cancer (MTC). The drug was previously approved by the U.S. Food and Drug Administration (FDA). 

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Cabozantinib Clinical Trial for Differentiated Thyroid Cancer: Update 

The clinical trial of Cabozantinib for patients whose differentiated thyroid cancer has progressed while on a VEGFR inhibitor has now enrolled 50% of the patients for which it has spaces, reports Manisha H. Shah, M.D., of the clinical trial sponsor, the International Thyroid Oncology Group (ITOG). Dr. Shah is also a ThyCa Medical Advisor. 

This clinical trial, ITOG’s first clinical trial, is a multicenter, open-label Phase II trial of Cabozantinib in patients who have radioiodine-refractory, differentiated thyroid cancer (papillary, follicular, and their variants), and whose cancer has progressed while on first-line therapy with a VEGFR antagonist. 

Led by the Ohio State University Comprehensive Cancer Center, the clinical trial is open at Massachusetts General Hospital, Mayo Clinic (Jacksonville and Rochester), M.D. Anderson Cancer Center, Roswell Park Cancer Institute and University of Chicago. 

The trial is coordinated by the Academic and Community Cancer Research United (ACCRU) and is funded by the Cancer Therapy Evaluation Program (CTEP) of the National Cancer Institute (NCI) at the U.S. National Institutes of Health.  Additional funding for the clinical trial and correlative science is provided by ITOG. 

More information related to this clinical trial and its eligibility requirements is available at http://clinicaltrials.gov/ct2/show/NCT01811212?term=cabozantinib+in+thyroid&rank=2.

For questions related to this trial, please contact Manisha H. Shah, M.D. at 614-293-4680 or manisha.shah@osumc.edu.

For further information about clinical trials, and suggestions on questions to ask from thyroid cancer patients who have taken part in clinical trials, visit the Clinical Trials page on our website. 

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Conference Registration Opens 

Register either online or by mail, for 1, 2, or all 3 days of the 17th International Thyroid Cancer Survivors’ Conference, October 17-19, 2014, in Denver, Colorado. There are discounts for early-bird registration by September 17th. 

There’s also a scholarship box to check on the registration form, for anyone who needs a scholarship to cover the registration fee. We want everyone interested to come, to learn from dozens of experts and meet others who understand what you’re going through. 

Coming Soon: Speaker introductions and more. Watch our Conferences page for updates.

Hope to see you there! 

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Free Patient Information Packet and Newsletters 

We free mail patient information packets anywhere in the world. Each packet includes the 50-page handbook Thyroid Cancer Basics, and more. 

We also 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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Welcome to the Newest ThyCa Support Groups 

More than 110 local ThyCa Support Groups provide e-mail, phone, and in-person support to people around the United States and in Australia, Canada, Colombia, Costa Rica, and Philippines. 

Welcome to our newest groups, in Groups in Atlanta, Georgia; Austin, Texas; Brockville, Ontario, and Medellin, Colombia. 

Visit our Support Groups section for the web pages, contacts, and schedules for all the support groups. 

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Nine Reasons To Attend an In-Person 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 the Nine Reasons here. 

More than 110 local ThyCa support groups serve communities around the United States and in Australia, Canada, Costa Rica, and Philippines. 

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

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From the E-Mail Inbox 

From Ohio:
Wow!!! Thank you so much. Yes, you were very helpful. I love the website and the recipes. I have gained so much knowledge through the posts of so many. I was able to prepare myself for side effect possibilities and I did have the salivary gland swelling. If it wasn’t for this web site, I would have gone to the ER thinking something bad was going on. Thank You.

From New Jersey:
I am a thyroid cancer survivor who is one of your members.  I will be addressing my school next week about Thyroid Cancer.  Can you send me information to hand out?

Thank you.

(Editor’s Note: Yes we can! Please send your requests for materials to thyca@thyca.org)

From Texas:
May I please have 75 of the Thyroid Cancer Basics handbook?  I have ordered them in the past.  We use these handbooks in the Learning Center (at our medical institution).  Patients find them most helpful and of course we always suggest that they view your website.

(Editor’s Note: Yes we can!)

From North Carolina:
Many thanks! My daughter is starting the two week low iodine diet very soon before her RAI scan. I want to assist her with all I can learn. The cookbook will be my guide. What a fantastic relief from ThyCa for such an important diet. Again thanks.  

From another correspondent:
I was looking for some info for a friend’s son (45 yrs old) that just had thyroid cancer surgery and I came across your web site. It’s wonderful. Having thyroid problems for a few years and then facing thyroid cancer was quite overwhelming for me in 1998. I have made it a mission to keep others informed. Your web site will be a wonderful resource for them. I wish I had known about your site then-oh well. Thanks again-keep up the good work—this world needs it. 

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A Mother’s Thank You 

Note posted to one of our online communities, from a mother in Canada, after receiving a free ThyCa Pediatric Backpack for her daughter with thyroid cancer: 

“My daughter received her backpack with all the info for thyroid cancer and the cookbook for the low iodine diet. It is full of great info about Thyroid cancer. Anyone with a child with Thyroid cancer can ask for one to be mailed to their home.”

If you know of a child dealing with a thyroid cancer diagnosis, write us at thyca@thyca.org to ask for a backpack.

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Know Your Pills 

Know Your Pills is the title of one of our popular handouts. It gives lots of helpful tips about storing and taking levothyroxine, together with a handy chart showing the U.S. levothyroxine brand names and dosages. 

It’s on our web site on the Know Your Pills page.

If you live outside the U.S. and take a brand of levothyroxine, please let us know the name of your pill, and the country where you live. We’ll use this information to expand the handout in a future update. Please send your information to thyca@thyca.org. As always, ThyCa will protect your privacy. 

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ThyCa’s Research Fundraising and Grants: An Update 

We support thyroid cancer research, and have proudly awarded more than $1.2 million in thyroid cancer research grants to researchers in 5 countries, thanks to your terrific support! 

We have awarded grants to researchers in France, Germany, Sweden, Switzerland, and United States. 

In 2014, we will award 3 new research grants, plus continuation grants. ThyCa’s Thyroid Cancer Research Grants are open to institutions and researchers worldwide, with grant recipients selected by an independent expert panel of the American Thyroid Association. 

Together, we are helping research move toward our dream of cures for all thyroid cancer, and a future free of thyroid cancer. 

Thank you to everyone who’s contributing to our research fundraising. Read more about our past grants and researchers, and find out how you can help, on the Rally for Research page. 

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David Kalish’s Book Donation 

Thank you to thyroid cancer survivor, David Kalish, for donating half of the week’s proceeds from sales of his novel, The Opposite of Everything, to ThyCa, in honor of “Head and Neck Cancer Awareness Week” (April 14-20) as well as during future awareness observances and event. 

Read an excerpt and more about The Opposite of Everything in our March 2014 Newsletter. 

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Strokes for Hope Scramble Coming Soon 

Spring has come to Pennsylvania, and the 2nd Annual Strokes for Hope Scramble will raise funds for ThyCa’s Research Grants. Wonderful volunteers are planning this golf tournament for June 21. 

Whether or not you can attend, you can support this great event! 
Read more here: www.thyca.org/news/strokes0314

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Coming to Grips with Thyroid Cancer 
By Vanessa E. Steil 

On April 2, 2013, I was diagnosed with thyroid cancer. I was 26 years old. 

One month earlier, during my annual visit to my gynecologist, my doctor had performed a complete physical. While examining my neck, he felt a lump on my thyroid. That discovery caught me off guard. I had no particular symptoms and had been healthy. Nonetheless, my doctor recommended that I have blood taken, a neck ultrasound, and he referred me to an endocrinologist. 

I told myself the lump was nothing more than a benign nodule and I tried to put the findings out of my mind, but I could not. The next day, I scheduled a neck ultrasound and blood work. Something during the ultrasound troubled me, so I was not surprised when I received a call from my doctor a week later with the results. I learned I was hypothyroid in addition to having the nodule. 

I had a consultation with an endocrinologist. He told me that the nodule was more than 1.8 cm and would require a fine needle aspiration. Six days later I had the nodule biopsied. The endocrinologist compassionately called me and requested that I come in so that he could deliver the news in person. 

Not only did the biopsy reveal my biggest fear, a diagnosis of papillary thyroid cancer, requiring a total thyroidectomy, but it forced me to come to terms with having to take daily thyroid hormone replacement for the rest of my life. Before I left his office, the doctor advised me that I “should not make a research project out of the diagnosis.” 

A few days passed as I digested the news. I had good days where I felt positive about my future, and days that were more difficult to endure. I began taking a low dose of thyroid hormone daily to treat my hypothyroidism, and each pill was a constant reminder of my present and what would become my future.

With all of this new information, I felt confused and overwhelmed. I knew I needed surgery, but should I get a second opinion?  How do I find a good surgeon?  Should I have a second biopsy?  It was then that I began to understand the endocrinologist’s warning. 

My first step in finding answers to my questions was the Internet. There I found one of my most invaluable resources, ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org). ThyCa had a wealth of helpful information for newly diagnosed patients, along with questions to ask your surgeon, what to expect during and after surgery, and support groups.

Another question arose. Did I want to have surgery near home, or did I want to see a doctor in the nearby city?  I decided to get a second opinion. The second surgeon told me something new. I had Hashimoto’s Thyroiditis, an inflammation of the thyroid gland that diminishes its ability to function properly. He recommended removing the entire thyroid and any surrounding lymph nodes. I felt confident with this surgeon and his proposed treatment and scheduled my surgery for May 2013.

However, when I returned home and thought it over, I realized that I needed more time to process everything. I wasn’t ready to have surgery the following month. Again, the endocrinologist’s words haunted me. By this time I was torn, and allowed myself to indulge in the “what ifs.”  What if the biopsy was wrong and it was nothing more serious than an under-active, enlarged thyroid?  What if I underwent a thyroidectomy for nothing and had a scar on my neck as a permanent reminder? 

I needed more answers before I could feel certain that surgery was my only option. I sought the advice of a third surgeon. He came to the same conclusion as the surgeons before him had:  I had thyroid cancer and needed a total thyroidectomy. His confidence finally forced me to face the reality I had been so desperate to avoid.

In June 2013 I underwent a total thyroidectomy with central neck dissection and lymph node removal. I was no longer someone with a diagnosis of thyroid cancer, but rather a cancer survivor. After I spent a night in the hospital and had symptoms no worse than a sore throat, I was ready to start the next chapter — recovery. 

I saw my surgeon about a week later. The pathology results had come back. Of the six lymph nodes removed, one showed signs of cancer. 

I had done little reading about radioactive iodine as a follow-up procedure, but I was sure that was going to be the next step. To my great surprise, my doctor had a different plan. He felt comfortable in recommending a wait-and-see approach, while monitoring my thyroglobulin, a marker for thyroid cancer.  I left his office that day elated with my care plan. It marked the first time that I was able to think of something other than cancer. 

It is now ten months after my surgery. In March 2014 I met with my doctor. I will continue to have blood work done regularly to ensure that my thyroid hormone dose remains at an effective level and to monitor my thyroglobulin level. 

My scar is virtually undetectable now, but its remnants serve as an important reminder of how fragile life can be. I was blessed to have the support of family, good friends, and an amazing team of doctors. The thorough examination conducted by my gynecologist is what led to early detection and my diagnosis. To him, I am forever indebted. 

If I could offer one piece of advice, no matter your age, it would be this:  Have your doctor perform a thyroid exam at your next appointment and learn how to properly do the exam yourself. If you think you have a problem, consider a follow-up appointment with a qualified physician. I urge everyone to visit the ThyCa website where you can receive free information on thyroid cancer, the importance of neck exams by medical professionals, radioactive iodine treatment, and so much more. 

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Santa Clara University Rowers Raise Awareness 
By Missy Giorgi, Assistant Coach, Santa Clara University Women’s Crew 

We had a wonderful series of events for ThyCa here! 

On Saturday, April 5th, and Sunday, April 6th, we had a table at “Preview Weekend,” where admitted students and their families visit Santa Clara to see if it’s the right school for them. 

We had people sign a poster-pledge, joining us on our “mission” against thyroid cancer. This catchphrase has been bouncing around campus recently due to the Santa Clara Mission on campus and our mission in the Athletics Department to compete. We adapted it for our own service mission with ThyCa! The poster-pledge was to help us make our message a tad more memorable, and to help us keep track of how many people we were able to reach!

Over the course of these two days, we found two thyroid cancer survivors, collected 50 or so signatures, and raised awareness and funds.   

On Tuesday, April 8th, we had a table outside the cafeteria for the benefit of the usual student population. We collected another full poster of signatures and found another thyroid cancer survivor working in our on-campus bookstore—one of our very own community members! We sold baked goods and ThyCa-colored hair ribbons to raise additional funds. 

For the ergathon, team members and our head coach worked on the rowing machine and the bike in hour-long intervals to go a collective 246,787 meters. 

All in all, the events were very successful. It was great to see how knowledgeable these young women became, and I think that meeting several survivors really helped us understand how prevalent thyroid cancer is and how important ThyCa’s support organization is. 

Thank you so much for helping us make this event so successful! 

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Low-Iodine Recipe of the Month

Moroccan Style Stewed Chicken 
Contributed by Carole P. 

Ingredients:

4 Cups Chicken broth
3 cloves garlic, minced
2 Tablespoons honey
2 teaspooons cumin
1/2 teaspooon cinnamon
1 14 ounce can no-salt diced tomatoes
1 large bell pepper, cut into 2″ long strips
1 large sweet onion, chopped
1/2 Cup raisins
4 Boneless, skinless chicken breast

Stir broth, garlic, honey, cumin, cinnamon, tomatoes, pepper, onion and raisins in slow cooker.
Add the chicken and coat the chicken in sauce.
Cook on low 7-8 hours. 
Serve over rice or pasta.

Carole writes, “My hhusband is on the low-iodine diet. I’m a gourmet cook and have discovered many of my recipes that I can adapt for the diet. They are so tasty and have so much flavor that he says to post them for others. I use many herbs and spices. My recipes include slow cooker pork roast and roasted veggies such as fennel, onions, peppers, and mushrooms with thyme and rosemary.” 

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

Free and Downloadable: Click on the Cookbook link on our home page 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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New Thyroid Cancer Infographic 

A thyroid cancer infographic for use as a flyer or a larger-size poster will soon be available on our Raise Awareness page. This new publication is a collaborative project of ThyCa and I Had Cancer. 

Visit our Raise Awareness Page for tips, tools, news, and a wide array of free downloadable materials. Or ask us to mail materials to you by e-mailing thyca@thyca.org.

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Follow Us on Facebook and Twitter 

We’re now over 10,500 strong on the ThyCa Facebook page and over 1,930 on Twitter!

More Invitations: 

  • If you’re not on either Facebook or Twitter, you may join at any time. They are free.
  • If you’re already on Facebook, invite your friends to ThyCa’s page.

Our support of each other — whether giving or receiving — is an incredible gift. Thank you for joining us. 

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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). 

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About ThyCa NEWS NOTES and ThyCa

Copyright (c) 2014 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. 

Thank you to our writing, editing, and proofreading team for this issue: Tom Engle, Missi Giorgi, Leah Guljord, David Kalish, Carole P., Pat Paillard, Barb Statas, Vanessa Steil, Theresa Wickerham, 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.