Levoxyl Update

February 4, 2014 — Just announced: Levoxyl will again be available on or around March 3, 2014, Pfizer reports. They’ve posted details here.

 

Contents

Thyroid Cancer Sets New Record in 2014

ThyCa (www.thyca.org) Urges Neck Checks, Provides Free Support Services, Events, Awareness Materials

A new record total of 62,980 people will be diagnosed with thyroid cancer in 2014 in the United States, an increase of 4.6% over 2013. Thyroid cancer continues to increase rapidly in both women and men. Three of every four people diagnosed with thyroid cancer are women. Our web site www.thyca.org will soon have more details.

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ThyCa To Award New Research Grants in 2014

ThyCa: Thyroid Cancer Survivors’ Association Inc., announces the 12th year of our research grants program, with grants open to researchers and institutions worldwide. 

ThyCa will again award 3 new grants for thyroid cancer research in 2014. Each grant will be for 2 years. 

One grant is for research on follicular-cell-derived thyroid cancer (papillary, follicular, anaplastic, and variants). Another is for research on medullary thyroid cancer. 

The third grant is for research on any type of thyroid cancer. It is named The Ric Blake Memorial Thyroid Cancer Research Grant, in memory and honor of ThyCa co-founder Ric Blake. 

The winning grant recipients will be selected by an independent expert panel of the American Thyroid Association (ATA), the professional association of clinicians and researchers specializing in thyroid diseases. The deadline for submitting a proposal summary to ATA (www.thyroid.org) is January 31, 2014.

ThyCa began funding grants in 2003. They were the first-ever grants to be funded entirely by thyroid cancer patients, caregivers and friends.  Read more at: www.thyca.org/news/grants2014

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ThyCa Research Grants: From 2003 to Today

We’re proud that ThyCa has awarded more than $1.2 million for thyroid cancer research, to researchers in 5 countries:  France, Germany, Sweden, Switzerland, and United States.

ThyCa has awarded grants to researchers at the following institutions:

  • Beth Israel Deaconess Medical Center (Harvard Medical School), Boston, Massachusetts
  • Cancer Center Karolinska, Stockholm, Sweden
  • Cochin Institut, Paris, France
  • Duke University Hospital, Durham, North Carolina
  • Harvard Medical School, Boston, Massachusetts
  • Johns Hopkins University School of Medicine, Baltimore, Maryland
  • Memorial Sloan-Kettering Cancer Center, New York, New York
  • Ohio State University, Columbus, Ohio, and Medical University of Gdansk, Poland
  • Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois
  • University Hospital Basel, Basel, Switzerland
  • University Hospital Duesseldorf, Duesseldorf, Germany
  • University of Arkansas for Medical Sciences, Little Rock, Arkansas
  • University of California Los Angeles/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California
  • University of Illinois at Chicago, Illinois
  • University of Texas M.D. Anderson Cancer Center, Houston, Texas
  • Washington Hospital Center/Georgetown University, Washington, D.C.

ThyCa invites everyone to join us in our quest to find cures for all thyroid cancer. 

To find out more about the ThyCa Research Funds and the annual Rally for Research, and how to help, click here .

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Thank You, 2013 Rally for Research Volunteers and Supporters

As 2014 gets under way, it is important to take a moment and reflect on all the great accomplishments our volunteers, supporters, and partners helped us achieve in 2013, as well as in the future.

We can’t thank you enough as we build on the momentum of this past year and look forward to even more progress ahead.

With new drugs being tested and studies under way to improve the treatments of all thyroid cancers and quality of life for everyone with thyroid cancer, we’re grateful to all the outstanding researchers working tirelessly toward our shared goals.

We won’t stop until cures are found.

Your fundraisers and awareness efforts make the difference, like Jennifer Smart and Rob Bohning,for example. 

Last spring, Jennifer set out on an amazing 2,650 mile hike of the challenging Pacific Crest Trail to raise awareness and funds for ThyCa.

Last summer, Rob Bohning initiated 4th Stage Cycling to bring people together through their love of bicycling and to raise funds for ThyCa’s Medullary Thyroid Cancer Research.

Their accomplishments continue to inspire us all.

Thank you to all our generous financial supporters. And to the many volunteers who reached out to friends and relatives, and created superb events, raising funds and thyroid cancer awareness at the same time.

Our special thanks to:

  • John Oaks, owner of the Hangin’ Tree Saloon, in San Antonio, Texas, for sponsoring the 12th Annual Megan Stendebach Memorial Golf Classic in May 2013 to benefit ThyCa.
  • Scott Jordan for the 1st Annual Strokes for Hope Golf Scramble, June 2013, at Grant View Golf Club, North Braddock, Pennsylvania. See our web site for information regarding the 2014 golf scramble.
  • Tina Descovich of Florida for her shopping fundraiser, following up on her great team run at the Disney Run (see photo on our home page).
  • Kim Samuel and Louise Samuel of the ThyCa Southern New Jersey Support Group for their shopping bag fundraiser.
  • Arlene Bregman and the ThyCa Manhattan, New York, Support Group for their wonderful Fun-D-Raiser.
  • Dozens of volunteers and donors for the 12th Annual Dinner/Auction To Support Thyroid Cancer Research, held in Philadelphia, Pennsylvania in September.
  • Lindsey and Wes Becker, Nashville, TN, for the music benefit at The Listening Room Café. 
  • All our year-round donors, volunteers, and supporters

We are making a tremendous difference. Thank you, one and all!

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How To Get Involved

Supporting the Rally for Research and promoting thyroid cancer awareness at the same time is simple. 

You can:

  • wear, display, and give ThyCa spirit items—pins, wristbands, shirts, and more
  • request, free of charge, ThyCa materials to give to doctor’s offices or other public information display areas,
  • honor someone and their special occasion with a tribute card and donation to ThyCa in their name,
  • participate or even develop a fundraising event, or
  • develop your own activity. 

The possibilities are many. Visit our How to Help page. 

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2014 Rally for Research Preview

  • Virtual 5k: This is actually many events, and began with a suggestion from a ThyCa member. We have developed the Virtual 5k to raise thyroid cancer awareness and funds for research. Simply choose a day that you want to run or walk a full 5k or simply around your neighborhood. Invite your friends and relatives to take part. This is an event that you can plan for any day of the year. Visit our Virtual 5K page for more information.
  • Dinner/Auction: The 13th Annual Dinner/Auction To Support Thyroid Cancer Research will be held Saturday, October 18, 2014, in Denver Colorado. We invite you to attend if you can. You can also support this evening of fellowship and fundraising by donating items for the auction, whether or not you attend.  2nd Annual Strokes for Hope Golf Scramble: June 2014, at Grant View Golf Club, North Braddock, Pennsylvania.
     
  • More Events Being Planned: Join one of the events, or create your own fundraiser! Thank you!

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Follow Us on Social Media

We’re now over 8,700 strong on the ThyCa Facebook page and over 1,700 on Twitter 

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

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Tell a Friend

You can help others find the free support, education, and communication that ThyCa provides. We serve people in countries around the world, and reach more people every day.

An easy way to spread the word and help others is to e-mail a link to the home page www.thyca.org. Use your web browser’s function “e-mail a link to this page,” so that the link to our home page will be placed into an e-mail message that you can send, or else just type in the link address yourself.

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Every Day

Every day, thousands of people with thyroid cancer, and their families, give and 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 and our thyroid cancer research grants.

It only takes a minute to make a donation online (www.thyca.org/donations/) 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. 

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 to ThyCa, PO Box 1102, Olney, MD 20830-1102, or visit our website. 

ThyCa Urges Neck Checks, Provides Free Support Services, Events, Awareness Materials

A new record total of 62,980 people will be diagnosed with thyroid cancer in 2014 in the United States, reports the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc. (“ThyCa”) based on information from the American Cancer Society and the U.S. Department of Health and Human Services.

Thyroid cancer continues to increase rapidly in both women and men. Three of every four people diagnosed with thyroid cancer are women, and the 2014 total of 62,980 people newly diagnosed (up 4.6% from 2013) will include 47,790 women and 15,190 men. A total of 1,890 deaths from thyroid cancer are expected in 2014 in the United States, compared with 1,850 in 2013.

“Early detection is a key. A neck check by a medical professional can be done quickly, but those few seconds could make all the difference when it comes to thyroid cancer, because thyroid cancer is usually treatable when found early,” says ThyCa Executive Gary Bloom, a thyroid cancer survivor. “However, some thyroid cancers are aggressive and difficult to treat.”

“Many thyroid cancer survivors first become aware that they may have cancer when they notice a nodule on their lower neck,” adds Bloom. “Others notice changes in their voice or breathing or swallowing. Most thyroid nodules are benign, but some are cancer.”

ThyCa urges everyone to learn about thyroid cancer and ask for a neck check at doctor’s appointments. People in all age groups from children through seniors can be diagnosed with thyroid cancer.

ThyCa provides free education, support services, handbooks, events, and awareness materials to patients, professionals, and the public around the world, by mail and by download. The web site has materials in English, Chinese, French, Japanese, and Spanish. Currently, people in more than 100 countries use ThyCa’s free services and resources. Free subscriptions to the online newsletter are available through out Guestbook.

The 17h International Thyroid Cancer Survivors’ Conference will take place on October 17-19, 2014, in Denver, Colorado, with dozens of thyroid cancer experts and other specialists speaking. ThyCa also raises funds for thyroid cancer research and will award new research grants in 2014, its 12th year of awarding grants toward its goal of cures for all thyroid cancers. ThyCa sponsors Thyroid Cancer Awareness Month, the worldwide observance, each September, and year-round awareness campaigns. Details, tools, and tips are on our Awareness page.

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is a nonprofit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals advised by thyroid cancer experts and dedicated to education, communication, support services, awareness for early detection, and thyroid cancer research fundraising and research grants. For more information, e-mail to thyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 10159-1545, or visit our web site.

Contact: Cherry Wunderlich, outreach@thyca.org, 301-493-8810, Director of Publications and Outreach, ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Contents

Thrilled to Give Back
By Arlene Bregman, Ph.D.

Almost five years ago my daughter, then 24, was diagnosed with thyroid cancer.  My family experienced what most of us in the ThyCa community have experienced.

We were nervous about a cancer diagnosis, nervous about surgery, nervous about radioiodine, and sure as hell didn’t like hearing people, including doctors, say that Julie had the “good” cancer. Isn’t the good cancer the one we don’t get?? 

After a few months of doing what I could to help my daughter directly, and seeing her recover well, I called ThyCa. I wanted to help the larger thyroid cancer community.

Based on my professional experience, I felt my greatest contribution would be to assist a local support group. A ThyCa group did not exist in New York City or even the nearby suburbs. I couldn’t imagine why, but thought there might be a good reason. I didn’t want to start a group to which no one would come, so I started helping by e-mail and phone.

Lo and behold, as calls of newly diagnosed people started coming in, so did the requests for an actual, physical group. Four and a half years ago we started our Manhattan, New York, local ThyCa support group. My life has been enriched enormously by the people who are part of it.

In December of 2012, we turned our monthly meeting into a “Fun-d Raiser” that raised almost $2,000 for ThyCa. I didn’t know that the holiday event would become an annual one, but members kept talking for months afterwards about the fun we had. One member even wanted to replicate it in the summer, with a “Christmas in July” event 

While that didn’t happen, we had our second “Fun-d Raiser” on Dec. 4th this year — and raised $4,447!

Numerous members obtained donations of merchandise for our auctions (tricky tray and silent), and asked friends, families, and employers for monetary contributions. We brought finger food, beverages, decorations — and friends and family — to make the event the fun fundraiser we apparently are now expecting annually!

The success of the December meeting is the same success we experienced throughout the year. It is because of the active participation of group members who make things happen.

“While I’m the facilitator, it’s not my group,” I constantly say. “It’s our group,” I add, always reminding members that we make decisions, and implement them, together — in choosing activities, speakers, topics, and more.

(Editor’s Note: Thank you so much, Arlene, for starting the ThyCa Manhattan, NY, Support Group —and for your terrific Fun-d Raiser! 

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My Story
By Destiny Schulte

I am 35 years old and I live in Michigan. 

In 2006, I went to my primary care physician for a severe sore throat, which I thought was strep. While the doctor was looking at my neck, she noted that it looked larger than it should.

She requested I have a neck ultrasound, and the results showed some large spots. The doctor wanted me to do an uptake test, which I did, and it showed the same large spots. After those results, I called the endocrinologist who had treated my brother for his Graves’ disease. I met with her and she looked at my test results. Then, I had blood drawn.

Several days later, she informed me that I had Hashimoto’s Thyroiditis. She gave me my options: to keep monitoring my TSH level and watch the spots on my thyroid, or to start medication and keep monitoring the spots. I elected to start medication. My TSH level was checked every two to three months. Every six months I had an ultrasound. 

In 2011, my endo requested a biopsy because the spots on the left side had grown slightly. Nothing abnormal was found. She sent me to see an endo at a teaching hospital. He reviewed my test results and suggested another biopsy. I told him that I would prefer to just have the thyroid removed. He told me the complications of doing a complete thyroidectomy, and advised me to think about it and call him in a few days to let him know what I decided. On the way home, I spoke with my mother and brother and decided that it would be best if I move forward with surgery.

Early in January 2013, I had my pre-op physical and was approved to move forward with surgery. On Thursday, January 24, 2013, I checked in, got prepped, and everything was great. I wasn’t nervous or scared. I thought, “This will be it! No more biopsies.”

The next thing I knew, I woke up in a private hospital room. I saw my mom sitting in the chair beside the bed. She informed me that I was out for four days. I have to admit I started to panic, and my anxiety started to take over. The surgeon came in and sat down at the end of the bed and explained that, during surgery, he found a few spots that he didn’t like the looks of on my thyroid and on three lymph nodes. He went on to tell me that I had papillary thyroid cancer, and that two of the three lymph nodes also tested positive for cancer.

It also turned out that I had severe vocal cord damage. I was released with instructions on the new medications. I was put on Cytomel, calcium, and liquid pain reliever.

The following week I went back to work, and in March I had radioactive iodine. I did the low-iodine diet and quit taking the Cytomel for two weeks prior to treatment. The first week I was able to work. The second week I was unable to drive, work, focus, think clearly, eat, or stay awake. I was sleeping 20-plus hours a day. I had to have my mother cook for me and bathe me. The Thursday prior to RAI, my TSH was at 119.16, which explained the way I had felt the entire week.

That next Wednesday, I had my dose of RAI: 150 mCi. Friday, I went through scans. The Nuclear Medicine doctor let me know that she found another lymph node under my collarbone that was cancerous. She agreed that, because I was so worried, that she would do the follow-up in six months. I was put on Synthroid 200 mcg.

During this whole process, I felt like nobody understood what I was going through. I had people tell me that I had the best kind of cancer. I was in such shock that anyone could think that any form of cancer is the best. Cancer is cancer, and it can all take a person’s life. I have family tell me that cancer was my fault, and that if I would have listened to the doctors I would not have cancer. Being anti-confrontational, I just ignored them.

My boss thinks that because I had surgery, I should be back to normal and I should not be getting sick anymore. I try to explain that the thyroid is an important organ in the human body, and that removal wasn’t going to make me completely healthy again. I’m still going to get sick, I’m still going to be tired, and my voice is still going to cut out while I’m doing presentations and conference calls. I am doing my best with what I have, but I cannot push my body the way I did before. I get tired quickly, and the vocal cord pain is a daily issue. Some days I can talk, but some days I cannot even whisper because of the pain.

In August, I met with the doctors. One told me to just take it easy on my voice, that it may take up to a year for my vocal cords to fully heal.

I found the ThyCa.org web site, and it helped me feel like I wasn’t alone. I was able to ask others questions. I saw that what I went through and was still going through wasn’t something that I was experiencing alone. The support and knowledge that the people on ThyCa.org gave me was so amazing. I wish I had found the site earlier. 

I wish there was a local support group closer to my home. The closest ones are an hour or more away. I started to look into what it would take to start a support group. I still want to start one in my area of Michigan.

At the end of October, I started the LID again, and this time it was much easier.  On November 11, I had my first Thyrogen injection. On November 12, I had my second injection. The next day I had my scans, and the Nuclear Medicine doctor said there was no evidence of cancer in my body. The spot that was glowing under my collarbone in March was GONE.

I am so thankful that I only had Stage I and that it was found so early that I only needed one round of RAI. Going forward, I have to check my TSH and T4 levels regularly, and could require medication adjustments. The Nuclear Medicine doctor told me that I should never need any more scans or RAI.

I’m thankful for the care I’ve received, and the people who have helped me along my journey. I look forward to helping those who will be diagnosed after me.

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In Memoriam to My Oncologist, Whom I Outlived
By David Kalish 

Five years ago, I enrolled in a cancer clinical trial. The oncologist running the drug trial took me under his wing. At the time, my cancer was spreading — years of traditional chemotherapy had done little but make me feel sick. But my oncologist reassured me with quiet confidence. “We’re going to help you stick around,” he said.

Today, thanks to him and his staff, I’m still here. But he isn’t. He died of lung cancer in September. It’s a painful irony I’m still sorting through.

Since my diagnosis in 1994 of a rare, incurable condition — Medullary Thyroid Carcinoma — I’ve been searching for an effective treatment. The cancer spread to my lungs in 2000, and, despite several operations and years of chemotherapy that battered my body, it continued to spread. In my mid-forties and with many things yet to accomplish in life, I researched experimental treatments and exchanged information with other sufferers of my rare disease through ThyCa: Thyroid Cancer Survivors’ Association, Inc.

One day I clicked to the clinical trials page of the National Institutes of Health web site and learned of a novel drug being tested against my specific condition. The drug, then called Zactima, was known as a tyrosine kinase inhibitor. Basically, it worked to block proteins that tell tumors to grow.

One weekday morning, I drove three hours from my home to meet the oncologist and get the ball rolling. Though untested drugs can be risky, my oncologist quickly earned my trust. A thick-haired man who spoke in quiet intelligent bursts, he’d keep a close eye on me, monitoring my status through bloodwork and scans. He spoke frankly of possible side effects, which included skin and intestinal problems. There was another concern. Two-thirds of study participants were supplied with the drug — but one-third received a placebo. Neither my doctor nor I knew which one I would receive. I could be left without a life preserver.

By my next appointment, three months later, my levels of Calcitonin — a hormone stimulated by my cancer — had crashed to 10,000 from over 100,000 before the trial. It was apparent that I was among the lucky two-thirds of patients. The drug was working! My oncologist wasn’t one to show a lot of emotion with me, but he shared an enthusiastic smile when he told me the good news. I immediately called my wife to tell her, and drove home that afternoon, my heart singing with hope for my future.

Over the next five years I visited the medical center every three months. I came to refill my prescription of once-a-day Zactima pills, undergo CT Scans and bloodwork — and to feel supported by the doctor and his staff of nurses and researchers. I remember pricking my ears to catch every morsel of what he was saying. He was a steadfast presence, and when he examined my neck and chest for recurrence, I was in sure hands.

But he was more than a doctor to me. As a theater buff, he took an active interest in my writing, and spoke to me of his daughter’s creative pursuits. I e-mailed him several of my short stories, and he always took time to send me a complimentary e-mail back. I considered him a friend.

The drug kept my condition at bay, and as a result of the trial was approved by the FDA, with the brand name Caprelsa, for use against my cancer. Today, thousands of patients like me can now benefit from the work by my doctor and other study researchers.

The last time I saw him was this past spring. I noticed no difference in his manner toward me. He seemed healthy, energetic, his hair as thick and dark as ever. He gave zero hint that he had cancer, let alone terminal cancer, even as he treated mine. He betrayed nothing. But when I visited the medical center again this summer, I received the odd news that he’d taken a leave. I asked for elaboration but the staff was oddly quiet. It wasn’t until I visited again this fall when his staff told me that he had died of lung cancer.

I was stunned. But he didn’t seem sick, I insisted. He kept working right up until the end. That’s when it hit me: he didn’t want his patients to know their doctor was dying of the same condition they hoped to beat. He didn’t want them to lose hope, even as his own situation grew hopeless. My sense of betrayal at not being told sooner melted away into gratitude. His silence was admirably selfless. The world — my world — is poorer without him.

When I revisit the center for my next appointment in January, I’ll see another oncologist who has replaced him on the trial I’d entered. My new oncologist is a smart, caring doctor originally from Belgium. I recognize signs of selflessness in her as well.  I now have a standard against which to measure people’s worth.  My oncologist gave me a new lease on life even as his own lease expired 

(Note: David Kalish is a medullary thyroid cancer survivor and author whose novel, The Opposite of Everything, will be published this coming March. 

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Rally for Research News
and ThyCa’s 2014 Research Grants

We’re proud to announce our 12th year of research grant funding. We’re deeply grateful to everyone who donates to our Rally for Research.

ThyCa’s grants are open to researchers worldwide. We have awarded grants to researchers in five countries since 2003. Our grants are for all types of thyroid cancer: papillary, follicular, medullary, anaplastic, and variants.

Proposals for ThyCa’s 2014 Research Grants are due by January 31, 2014. Get the details here 

For information about the past recipients and their research projects, and how you can support our research fundraising, visit our Rally for Research page.

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3 New Surveys: You’re Invited to Take Part

We’re excited about the three important new Thyroid Cancer Patient Experience Surveys.  Each survey takes just a few minutes to complete.

  • Thyroid Cancer & Quality of Life:  University of Chicago Survey
  • Detection of Radioactive Iodine (I-131) in Public Places Survey
  • Thyroid Cancer Quality of Life Survey: USC/UCLA

Please take part. Help advance knowledge about how we live with our cancer. You can participate from your own computer, and your responses are anonymous and confidential. Go to www.thyca.org and you’ll find all three surveys linked from the Home Page.

These new surveys bring to 15 the total number of surveys in which ThyCa has collaborated since 2001. We are proud to be part of these efforts.

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Follow Us on Social Media

We’re now over 8,700 strong on the ThyCa Facebook page and over 1,600 on Twitter 

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

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Cancer and Careers

Thyroid cancer disrupts our lives, including our careers. Cancer and Careers is a helpful nonprofit with information and resources for people with cancer, to help them thrive in their workplace by providing advice from experts, interactive tools, and educational events. Rebecca Nellis of Cancer and Careers (www.cancerandcareers.org) participated in the 16th International Thyroid Cancer Survivors’ Conference this year. We’re pleased to introduce this resource.

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Still Time to Donate in 2013

Together, with you and so many others, we work to ensure that no one has to feel alone as they face thyroid cancer, and that research will continue to progress toward a future free of thyroid cancer. 

We welcome your donations to help us continue this work.

Your generosity makes it possible for us to sustain, strengthen, and extend our free services and resources, and advance research toward cures for all thyroid cancer.

Go to our Donations page for our secure online donation form, or to donate by mail.

Thank you very much!

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Changing Standards of Thyroid Cancer Care

The standards for thyroid cancer care keep changing as researchers and clinicians gain new knowledge and share their findings.

As a result, the care for individual thyroid cancer patients is becoming increasingly tailored to the patient’s individual circumstances.

To find more information, visit our Popular Pages section on the right side of our home page www.thyca.org, where you’ll find Physician Guidelines, webinars with experts, publications, and the Links. One of our links is to Thyroid Cancer Canada (TCC).

TCC President Rita Banach wrote an article titled “Rethinking Thyroid Cancer,” inspired by a lecture by R. Michael Tuttle, M.D. at the World Thyroid Cancer Congress, a physicians’ meeting this past summer. Dr. Tuttle is a ThyCa Medical Advisor.  TThank you very much to Rita Banach, Thyroid Cancer Canada, and to Dr. Tuttle for permission to share this article.

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2014 Events Preview 

Hundreds of thyroid cancer events are already on the Calendar for 2014. These are terrific opportunities to meet others face to face, and to learn from experts.

Visit our Calendar page to find out more about local support group meetings in five countries, thyroid cancer seminars, webinars, workshops, Thyroid Cancer Awareness Month, and the 17th International Thyroid Cancer Survivors’ Conference.

The Calendar will continue to grow. Hope to see you at an event in 2014!

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Low Iodine Recipe of the Month

 

This month, we feature one of the first recipes contributed for the free Low Iodine Cookbook. It’s on page 107 of the cookboo.k’s 7th edition 

 

Wacky Cake
Contributed by Christine N. of Virginia

 

1 1/2 cups flour
1 cup sugar
3 Tablespoons cocoa
1 teaspoon baking soda
1/2 teaspoon salt
5 Tablespoons oil
1 teaspoon white vinegar
1 teaspoon vanilla
1 cup cold water

 

Preheat oven to 350 degrees F. Sift together flour, sugar, cocoa, soda, and salt into an 8 x 8 inch baking pan or dish. Mix thoroughly. Make 3 holes in the dry ingredients. Place oil in the first hole, vinegar in second hole, and vanilla in third hole. Pour water over all and mix well. Spread batter evenly in pan and bake in the dish that batter was mixed in. Bake 30 minutes or until center is firm. Cool. This can then be sprinkled with confectioners sugar.

Topping suggestion from Tracy T.: Crush strawberries or stew a package of frozen berries. Sweeten slightly with sugar and serve over pieces of cake.

Thank you, Christine and Tracy! This recipe has been a favorite since the first edition of the cookbook! 

 

Thank you also to the more than 200 generous volunteers who have contributed your favorite recipes for the 7th ediition and for the next edition.

 

Visit our website to download the free cookbook. It’s available in English, Spanish, and French.

 

We welcome new recipes at any time. E-mail your recipe to recipes@thyca.org. Thank you

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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) 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. 

Thank you to our writing, editing, and proofreading team for this issue:  Arlene Bregman, Leah Guljord, David Kalish, Christine N., Pat Paillard, Destiny Schulte, Barb Statas, Tracy T., 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 P.O. Box 1102, Olney, MD 20830-1102, or visit our website.  

Contents

Why Should I Participate in Medical Surveys?

Our answers help medical professionals, patients, and caregivers better understand the experiences of people coping with thyroid cancer. 

Each survey collects useful information on aspects of coping with thyroid cancer.

In his report on the Voice Issues survey, Dr. David Myssiorek, one of ThyCa’s medical advisors, noted that these surveys contribute to physician knowledge, patient care, and doctor-patient relationships.

Dr. Myssiorek also wrote, “The importance of these surveys is manifold. First, the surveys can supply medical researchers with normalized data from patients across small and large centers, not simply patients from individual large academic centers. Second, if the medical literature states that there is a low percentage of dry mouth after RAI, but ‘our constituency claims otherwise, by using our questionnaire,’ ThyCa constituents could change the way in which patients and doctors interact in the future. Third, if vocal issues are more prevalent than currently suspected, then patients with weak indications for thyroid surgery could include the potential for vocal change in their decision-making. Similarly, if our membership determined by survey that vocal therapy was helpful; wouldn’t more physicians tell their patients with vocal changes about it?”

“The point is that ThyCa-endorsed surveys give power to us as the people who answer them. These surveys potentially could change doctor/patient relationships, improve the exchange of information, and better prepare patients for thyroid surgery, and they could help eliminate non-effective practices or add therapies to enhance post treatment quality of life. The more people participate in these surveys, the louder our collective voice will be heard.”

Thank you very much to everyone who has already participated in a survey.

Whether you’re new to thyroid cancer, or a survivor of many years, you can help by visiting www.thyca.org and taking the surveys posted there. Thank you!

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3 New Surveys: How To Take Part

We’re excited to announce 3 important new Thyroid Cancer Patient Experience Surveys.  Each survey takes just a few minutes to complete 

Please take part. Help advance knowledge about how we live with our cancer. You can participate from your own computer, and your responses are anonymous and confidential 

These new surveys bring to 15 the total number of surveys in which ThyCa has collaborated since 2001. We are proud to be part of these efforts.

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Thyroid Cancer & Quality of Life: University of Chicago Survey

Click here to participate.

Researchers at the University of Chicago are conducting a multi-institutional study on how the diagnosis and treatment of thyroid cancer affects people’s quality of life in both the short term and the long-term.

If you have had thyroid cancer, your participation in this short survey will be greatly appreciated.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to cooperate with the University of Chicago in this study.

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Detection of Radioactive Iodine (I-131) in Public Places

A Survey for People Living In or Traveling from US States and Territories

Click here to participate.

The purpose of this study is to evaluate aspects of the experience of patients who have been treated with I-131 and if they were detected and/or detained by various security systems at locations such as airports, border crossings, and governmental buildings.

The results of this survey may be very valuable in the future management of I-131 therapies.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to cooperate with Medstar Washington Hospital Center in this study.

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Thyroid Cancer Quality of Life Survey:USC/UCLA

Click here to participate.

We are physicians from the University of California Los Angeles (UCLA) and the University of Southern California (USC) who would like to learn about quality of life in thyroid cancer survivors.

We will use this anonymous data to develop a program in partnership with oncologists, endocrinologists, and surgeons to better serve thyroid cancer patients and survivors. We appreciate your time and input.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to cooperate with USC and UCLA in this study.

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Meet the Researchers

Melanie Goldfarb, M.D., Surgeon, is Assistant Professor at the University of Southern California Norris Cancer Hospital, Los Angeles, California, where she specializes in Surgical Oncology. Her subspecialties and clinical interests are minimally invasive thyroid, parathyroid, adrenal surgery; Pediatric Endocrine Surgery, non-pancreatic neuroendocrine tumors, and ultrasound. She received her education at University of Illinois College of Medicine, Chicago, Illinois, and Brown University, Providence, Rhode Island, with residency at Beth Israel Deaconess/Harvard Medical School in Boston, Massachusetts, and Clinical Fellowship in endocrine surgery at Jackson Memorial Hospital University of Miami Health System in Miami, Florida. She also co-edited The Pocket Surgery Notebook. In addition, she has been a ThyCa Conference speaker.

Raymon H. Grogan, M.D., is a specialist in the surgical management of thyroid, parathyroid and adrenal gland diseases. He is an assistant professor of surgery at the University of Chicago, Chicago, Illinois, as well as the director of the endocrine surgery research program.  He studies the underlying causes as well as surgical and oncologic outcomes of endocrine cancers, with a particular focus on thyroid cancer. Dr. Grogan is also a junior faculty Bucksbaum scholar at the University of Chicago. As such he also has an interest in studying the doctor-patient relationship. As a surgeon, one aspect of this relationship that Dr. Grogan is particularly interested in is understanding how surgeons can better communicate and care for patients after they have had their surgery.  Prior to coming to the University of Chicago, he completed his general surgery residency training at Stanford University in California, followed by two years of fellowship training in endocrine surgery at the University of California San Francisco.  Dr. Grogan also completed three years of basic science and outcomes-based research during his training years in California. He has been a ThyCa conference speaker. 

Douglas Van Nostrand, M.D., Nuclear Medicine Physician, is Director of Nuclear Medicine of the Division of Medicine at Washington Hospital Center in Washington, DC. He is also Professor of Medicine at Georgetown University Hospital and Director of the Washington Hospital Center’s nuclear medicine residency program. Prior to joining the Hospital Center, Dr. Van Nostrand was director of nuclear medicine at Good Samaritan Hospital in Baltimore, Maryland, after serving in the United States Army as director of nuclear medicine at Walter Reed Army Medical Center and in the US Air Force as director of nuclear medicine at Malcolm Grow Medical Center in Washington, D.C. Dr. Van Nostrand completed his postgraduate training in internal medicine at Wilford Hall Medical Center in San Antonio, Texas, and his nuclear medicine training at the National Naval Medical Center in Bethesda, Maryland. He has an M.D. degree from Emory University School of Medicine and a B.S. from Duke University. He has edited and co-edited seven medical books for professionals and patients including the patients’ reference Thyroid Cancer: A Guide for Patients, and the medical textbook co-authored with Dr. Leonard Wartofsky, Thyroid Cancer: A Comprehensive Guide to Clinical Management. He is a member of ThyCa’s Medical Advisory Council and has spoken at many ThyCa support group meetings, regional workshops, and conferences.

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Surveys: From 2002 to Today

ThyCa has collaborated in 15 thyroid cancer patient experiences surveys, starting in 2002.

Individual surveys have received responses ranging from 518 to more than 5,800 thyroid cancer patients.

  • 2002. Survey of health profiles and quality of life of thyroid cancer survivors. Pamela Schultz, Ph.D.,
    R.N., M.S., developed this survey. This was the first survey of patients’ experiences. ThyCa helped Dr.Schultz refine and finalize her survey questionnaire, made the target audience aware of the survey, and ensured participation. Responses came from 518 thyroid cancer survivors. Results were published in the journal Head and Neck in May 2003. The study concluded that participants “generally report good health long term but describe distinct, lasting medical problems including symptoms of thyroid dysregulation. The extent and manner in which cancer therapy contributes to the health profile of the group merits further inquiry.”

  • December 2003-early 2004. ThyCa’s Thyroid Cancer Patient Experiences Survey. This international survey was developed by ThyCa volunteers, with funding from Genzyme, Advisory Board Foundation, and ThyCa: Thyroid Cancer Survivors’ Association, Inc. A total of 2,149 patients answered questions about their sources of information about thyroid cancer, support services received, the types of physicians from whom they received their thyroid cancer care, and testing, treatments, and side effects, Most participants were from the United States, Canada, United Kingdom, and Australia; people from many additional countries also responded. They had all types of thyroid cancer, ranged from teenagers to people more than 80 years old, and had been diagnosed at varied time periods from recently to more than 40 years prior.
  • 2007. USA Today Survey of Radioactive Iodine Treatment. This survey, developed by the newspaper USA Today, was posted on ThyCa’s web site for one week and received 900 responses. In a series of articles, USA Today reported that “more than half were treated and released rather than kept in hospitals…. and that 85% of outpatients worried about exposing their family members to radiation.”
  • 2009. Patients Use of Complementary and Alternative Medicine (CAM).  This survey was developed by Stephanie Lee, M.D., Ph.D., Endocrinologist, Boston University Medical Center, ThyCa Medical Advisor, and Jennifer Rosen, M.D., Boston University Medical Center. Responses came from 1,326 participants. Over 80% of the thyroid cancer patients reported using some form of CAM, the researchers reported at the 14th International Thyroid Congress in September 2010. This use of CAM is about double that of the general population in the United States. Results also showed that 18% of the study participants reported that their physician did not know about, ask about, or prescribe their CAM use. A total of 83% of the patients in the study had papillary thyroid cancer. The participants averaged 46 years old; 84% were women and 90% were white. The most common forms of CAM were multivitamins and prayer. Apart from these two approaches, the five most common CAM mind-body approaches were massage, chiropractic, yoga, meditation, and acupuncture. The five most common CAM biologic approaches were herbal tea, special diets, herbal supplements, homeopathy, and ginger. About 7% of the survey respondents reported using no form of CAM.
  • 2009. Radioactive Iodine Treatment. The survey team was led by Douglas Van Nostrand, M.D., Nuclear Medicine Physician, and Matthew D. Ringel, M.D., Endocrinologist, both ThyCa medical advisors. Responses helped determine information such as the frequency of radioiodine outpatient and inpatient treatments, the adequacy of the radiation safety instructions that patients received, and areas involving I-131 treatments that may be improved.
  • 2009. Voice Following Thyroid Surgery. This is the largest survey to date, receiving responses from more than 5,800 people. This survey collected information about voice disorders following thyroid surgery, how frequently these issues occur, and whether vocal change affected the patient’s life. Results revealed a significant rate of voice issues and impacts.  The survey was developed by David Myssiorek, M.D., ThyCa Medical Advisor, Professor of Otolaryngology, New York University Langone Medical Center, New York, NY. Dr. Myssiorek has presented the findings at medical meetings and ThyCa conferences.
  • 2010. Radioactive Iodine Treatment Survey. This survey was developed by the U.S. House of Representatives Subcommittee on Energy and Environment of the Committee on Energy and Commerce to gather information about patients’ experiences with receiving radioactive Iodine (I-131) as part of their thyroid cancer care. The questionnaire received more than 1,000 responses during the one week that it was posted on ThyCa’s site.
  • 2010. Patients Experiences Survey. This international survey was developed by volunteers from organizations in seven countries and received 2,398 responses, nearly half from the United States and most of the rest from Germany, Canada, France, United Kingdom, Argentina, and Italy.  Kate Farnell, director of the UK’s Butterfly Thyroid Cancer Trust, presented results at the International Thyroid Congress. Patients reported varied experiences. More than 80% received radioactive iodine. Most said that they needed better information and psychological support at the time of diagnosis.
  • 2011. Radioactive Iodine and the Salivary Glands. ThyCa Medical Advisors Douglas Van Nostrand, M.D., and Brian McIver, M.D., Ph.D., and other researchers led this study. Its goal was to identify whether or not patients had any of several side effects from their last I-131 therapy and to help identify factors that may have increased, decreased, or prevented these side effects.
  • 2012. Pain Survey. The goal was to understand the challenges that patients experience in experiencing and managing cancer pain, as well as in communicating with their health professionals about it. ThyCa and other cancer advocacy organizations participated in this survey.
  • 2013. AYA Patients Experiences Survey. This survey was developed by physicians from the University of California Los Angeles and the University of Southern California, to learn about informational and support needs of thyroid cancer survivors at the time of diagnosis, during treatment, and after cancer care. The goal was to use the findings to improve patient services and programs.
  • 2013. RAI After-Effect. This survey is currently open to your participation. It is gathering information about an after-effect of radioactive iodine. David Myssiorek, M.D., ThyCa Medical Advisor and Professor of Otolaryngology, Head and Neck Surgery, at New York University School of Medicine, and Steven Scharf, M.D., Chief of Nuclear Medicine, Lenox Hill Hospital, New York, NY, are the lead researchers.
  • 2013. See the article above for details. The surveys listed below were recently posted on on our website. You’re invited to take part.
    • University of Chicago Quality of Life Survey.
    • RAI Detection in Public Places Survey.
    • USC /UCLA Quality of Life Survey.

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Follow Us on Social Media

We’re now over 8,800 strong on the ThyCa Facebook page and over 1,600 on Twitter 

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

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Proposals for ThyCa’s 2014 Research Grants Due by January 31, 2014.

These grants are open to researchers worldwide, and are for all types of thyroid cancer: papillary, follicular, medullary, anaplastic, and variants. We’re proud to have awarded grants to researchers in 5 countries since 2003. Get the details here: www.thyroid.org/thyroid-physicians-professionals/research-grants-thyroidology/ For information about past recipients and their research projects, visit our Rally for Research page.

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Every Day

Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors’ Association, Inc. Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.

It only takes a minute to make a donation online in support of ThyCa’s work (or you are welcome to donate by mail to ThyCa, P.O. Box 964, Chesterfield, MO 63006-0964).

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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.

Researchers at the University of Chicago are conducting a multi-institutional study on how the diagnosis and treatment of thyroid cancer affects people’s quality of life in both the short term and the long-term.

If you have had thyroid cancer, your participation in this short survey will be greatly appreciated.

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to cooperate with the University of Chicago in this study.

We invite you to take part. Help increase knowledge about thyroid cancer and how it affects our lives.

Click here for the survey web page.

Thank you very much!

Contents

ThyCa To Award 3 New Thyroid Cancer Research Grants in 2014

Grants Open to Researchers Worldwide
 

Proposals Due by January 31, 2014

ThyCa: Thyroid Cancer Survivors’ Association, Inc. announces the 12th year of its research grants program, with grants open to researchers and institutions worldwide. ThyCa will award 3 new grants for thyroid cancer research in 2014.

 Specifics:

  • Each grant will be for 2 years.
  • One grant is for research on follicular-cell-derived thyroid cancer (papillary, follicular, anaplastic, and variants).
  • Another is for research on medullary thyroid cancer.
  • The third grant is for research on any type of thyroid cancer. It is named The Ric Blake Memorial Thyroid Cancer Research Grant, in memory and honor of ThyCa co-founder Ric Blake.

The winning grant recipients will be selected by an independent expert panel of the American Thyroid Association (ATA). ATA is the professional association of clinicians and researchers specializing in thyroid diseases. The grant application guidelines are on ATA’s web site (thyroid.org). The deadline for submitting a proposal summary to ATA is January 31, 2014.

ATA’s Research Committee will rank proposals according to their scientific merit. The authors of selected proposals will be notified by the ATA as early as March; they will be invited to submit complete grant applications, from which the grant winners will be selected 

ThyCa supports research with the goal of cures for all thyroid cancer. The ThyCa Grants began in 2003. They are the first-ever grants to be funded entirely by thyroid cancer patients, caregivers and friends. 

ThyCa has awarded more than $1.2 million for thyroid cancer research, to researchers in 5 countries: France, Germany, Sweden, Switzerland, and the United States. ThyCa has awarded grants to researchers at the following institutions:

  • Beth Israel Deaconess Medical Center (Harvard Medical School), Boston, Massachusetts
  • Cancer Center Karolinska, Stockholm, Sweden
  • Cochin Institut, Paris, France
  • Duke University Hospital, Durham, North Carolina
  • Harvard Medical School, Boston, Massachusetts
  • Johns Hopkins University School of Medicine, Baltimore, Maryland
  • Memorial Sloan-Kettering Cancer Center, New York, New York
  • Ohio State University, Columbus, Ohio, and Medical University of Gdansk, Poland
  • Penn State Hershey Cancer Institute, Hershey, Pennsylvania
  • Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois
  • University of California Los Angeles/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California
  • University Hospital Basel, Basel, Switzerland
  • University Hospital Duesseldorf, Duesseldorf, Germany
  • University of Arkansas for Medical Sciences, Little Rock, Arkansas
  • University of Illinois at Chicago, Illinois
  • University of Texas M.D. Anderson Cancer Center, Houston, Texas
  • Washington Hospital Center/Georgetown University, Washington, D.C.

ThyCa invites everyone to join us in our quest to find cures for all thyroid cancer. 

Find out more about the ThyCa Research Funds and the annual Rally for Research.  Thank you!
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Nexavar Approved To Treat Advanced Differentiated Thyroid Cancer 

The U.S. Food and Drug Administration expanded the approved uses of Nexavar® (sorafenib) on November, 22, 2013, and approved the drug to treat late-stage (metastatic) differentiated thyroid cancer.

Differentiated thyroid cancer includes papillary and follicular thyroid cancer and their variants such as Hurthle cell and tall cell.
 
“Differentiated thyroid cancer can be challenging to treat, especially when unresponsive to conventional therapies,” said Richard Pazdur, M.D., director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “Today’s approval demonstrates the FDA’s commitment to expediting the availability of treatment options for patients with difficult-to-treat diseases.”

Nexavar is co-marketed by Bayer HealthCare Pharmaceuticals Inc., based in Wayne, New Jersey, and Onyx Pharmaceuticals, based in South San Francisco, California.

Get more details here: www.thyca.org/news/sorafenib1113/

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More than 100 Local ThyCa Support Groups Are Here To Help You

“They helped me through a really tough time, and I don’t know what I would have done without their kindness, knowledge, and compassion,” writes an attendee about one of the ThyCa support groups in Florida. 

Our support groups are free and open to any and all survivors and their families and friends.

In these groups, people share thyroid cancer information, their experiences with their thyroid cancer, and insights on how they are coping with thyroid cancer, and support.

For the web pages of all the groups, with the facilitator contact information and meeting schedules, go to our Find Support page.

Want to start a group in your area? Either contact the ThyCa Support Group Coordinator at support_coord@thyca.org or else download the application you’ll find on this page (www.thyca.org/sg/). 

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From Our E-Mail Inbox 

From Arizona
I am helping raise awareness for a college course project for nonprofit organizations. I chose thyroid cancer because my mother is a survivor and thought this is a perfect topic for a Public Service Message. I would like some free awareness brochures to give to my audience.

From Nova Scotia, Canada –
Could I please order 50 copies of each of these educational resources for our Patient Information Centre? (brochures and Thyroid Cancer Basics handbook)

From California –
Thank you, thank you for your quick reply! You are so kind. I appreciate your help.

From Ohio –
Thank you so much for providing these resources.

From Texas –
I am a Women’s Health Nurse Practitioner and work in a busy office. I would like to request a few of the neck check cards for our patients.

From Colorado –
Thank you so much for everything you do and helping get the information out to everyone.

From New York –
Thanks for all the support and information online. Helped give me ALL the information I was lacking for my Thyroid Cancer and treatment. God Bless You ALL

From Iowa –
Thank you for this entire website. Information is power!  

From Arizona –
Our teenage son was diagnosed with Papillary Thyroid Cancer, and he had a total thyroidectomy. A good friend of ours suggested we check out your website. It has been very informative to us! My husband and I would like to request a backpack of thyroid cancer information for him.

From Oklahoma –
Thanks so much for all you do!

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ThyCa at Genzyme Thyroid Cancer Advisory Board Meeting

ThyCa members Gary Bloom, Bridget Corcoran, Ralph Elliott, Wendy Garland, and Tim Lau participated in Genzyme’s Thyroid Cancer Advisory Board meeting in Cambridge, Massachusetts in November, to discuss ways to help future care of people with thyroid cancer.  Gary is ThyCa Executive Director and ThyCa Co-Founder, involved in ThyCa for 18 years. Bridget is ThyCa Chicago Co-Facilitator, a member of the ThyCa Board of Directors, represents ThyCa at many medical professional and community health meetings, and conference and workshop planning team member. Wendy and Tim facilitate support group meetings, as well as representing ThyCa at numerous medical and community meetings. Thank you all for your service.

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ThyCa at Clinical Trials Meeting at National Cancer Institute

On November 10 and 11, ThyCa Executive Director Gary Bloom plus longtime ThyCa volunteers Elaine Grant, Todd Larson, Cal Pierce, and Katharine Silkin took part in the Thyroid Cancer Clinical Trials meeting that brought together thyroid cancer experts from numerous centers. Speakers and breakout session leaders included many ThyCa medical advisors. This meeting was designed to chart the course for numerous areas of future thyroid cancer research.

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New Surveys Coming Soon

Watch for our special newsletter issue, giving you links to 3 important new surveys developed by thyroid cancer experts in California, Illinois, and Washington, D.C. These online surveys are anonymous and quick to complete. Please take part. Together, we can help advance knowledge and help improve how others cope with the many challenges of thyroid cancer.

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Have you signed our Guestbook?

Sign up and we’ll put you on our mailing list for ThyCa News Notes and special announcements including events and activities. We’ll also send you our free patient information packet!

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Honoring and Remembering Others

Is there someone you’d like to celebrate, honor, or remember and benefit thyroid cancer research at the same time? We have lovely “Tribute Gift Cards” for special occasions like birthdays, congratulations, get-well messages, sympathy, memorials, and more, that do just that!

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Rally for Research News

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 support! We have awarded grants every year starting in 2003.

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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Follow Us on Social Media

We’re now over 8,700 strong on the ThyCa Facebook page and over 1,600 on Twitter 

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

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Low Iodine Recipe of the Month
Contributed by Sharon M.

Blueberry Pancakes

3 egg whites, beaten
2 Tablespoons sugar
1 teaspoon vanilla
3 teaspoons baking powder
1 teaspoon non-iodized salt
2 Tablespoons canola oil
1 1/4 cup flour
3/4 cup water
Fresh blueberries, rinsed and drained

Slowly add sugar and vanilla to well-beaten egg whites. Then add remaining ingredients (except the blueberries), stirring after adding each one. Let batter sit for 5 minutes. Then gently fold in the blueberries. Pour the pancakes on hot griddle sprayed with vegetable oil to bake. 

Serve with real maple syrup. Makes 10-12 pancakes.

Sharon writes, “Thank you so much for the Low Iodine Recipe Collection, including the general comments about low iodine diets, foods that are okay and not. It is extremely helpful 

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

Free and Downloadable

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

The Cookbook is also available in:

• Spanish and
• French

Please remember, while you’re welcome to download and print the entire free low-iodine cookbook, you can also print just the pages you need.

This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. All the recipes are favorites of some of our ThyCa volunteers, who are sharing them with everyone, to make the low-iodine diet easy and tasty. The recipes are also great for family meals and for potlucks, any time.

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

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Invitation To Become a Member

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

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, click here.
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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).

Thank you very much!

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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. 
 
Thank you to our writing, editing, and proofreading team for this issue: Leah Guljord, Sharon M., 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.  

Grants Open to Researchers Worldwide

ThyCa: Thyroid Cancer Survivors’ Association Inc., announces the 12th year of its research grants program, with grants open to researchers and institutions worldwide. 

ThyCa will award 3 new grants for thyroid cancer research in 2014. Each grant will be for 2 years. 

One grant is for research on follicular-cell-derived thyroid cancer (papillary, follicular, anaplastic, and variants). Another is for research on medullary thyroid cancer. 

The third grant is for research on any type of thyroid cancer. It is named The Ric Blake Memorial Thyroid Cancer Research Grant, in memory and honor of ThyCa co-founder Ric Blake.

The winning grant recipients will be selected by an independent expert panel of the American Thyroid Association (ATA). ATA is the professional association of clinicians and researchers specializing in thyroid diseases. The grant application guidelines are on ATA’s web site. The deadline for submitting a proposal summary to ATA is January 31, 2014.

ATA’s Research Committee will rank proposals according to their scientific merit. The authors of selected proposals will be notified by the ATA as early as March; they will be invited to submit complete grant applications, from which the grant winners will be selected.

ThyCa supports research with the goal of cures for all thyroid cancer. The ThyCa Grants began in 2003. They are the first-ever grants to be funded entirely by thyroid cancer patients, caregivers and friends. ThyCa has awarded more than $1.2 million for thyroid cancer research, to researchers in 5 countries:  France, Germany, Sweden, Switzerland, and the United States.

ThyCa has awarded grants to researchers at the following institutions:

  • Beth Israel Deaconess Medical Center (Harvard Medical School), Boston, Massachusetts
  • Cancer Center Karolinska, Stockholm, Sweden
  • Cochin Institut, Paris, France
  • Duke University Hospital, Durham, North Carolina
  • Harvard Medical School, Boston, Massachusetts
  • Johns Hopkins University School of Medicine, Baltimore, Maryland
  • Memorial Sloan-Kettering Cancer Center, New York, New York
  • Ohio State University, Columbus, Ohio, and Medical University of Gdansk, Poland
  • Penn State Hershey Cancer Institute, Hershey, Pennsylvania
  • Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois
  • University of California Los Angeles/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California
  • University Hospital Basel, Basel, Switzerland
  • University Hospital Duesseldorf, Duesseldorf, Germany
  • University of Arkansas for Medical Sciences, Little Rock, Arkansas
  • University of Illinois at Chicago, Illinois
  • University of Texas M.D. Anderson Cancer Center, Houston, Texas
  • Washington Hospital Center/Georgetown University, Washington, D.C.

ThyCa invites everyone to join us in our quest to find cures for all thyroid cancer. 

To find out more about the ThyCa Research Funds and the annual Rally for Research, and how to help, click here. 

Detection of Radioactive Iodine (I-131) in Public Places
A Survey for People Living In or Traveling from US States and Territories

Click Here to Participate:  http://www.surveymonkey.com/s/BCGM2MD

The purpose of this study is to evaluate various aspects of the experience of patients who have been treated with I-131 and if they were detected and/or detained by various security systems at locations such as airports, border crossings, and governmental buildings.

The results of this survey may be very valuable in the future management of I-131 therapies.

Your responses are voluntary and anonymous. The survey takes a few minutes to complete.

In advance, thank you for your participation.

Yours truly,

Douglas Van Nostrand, M.D., FACP, FACNM
Director, Division of Nuclear Medicine
MedStar Washington Hospital Center
Professor of Medicine, Georgetown University School of Medicine
Washington, D.C.

Michael Orquiza, M.D.
Clinical Research, Division of Nuclear Medicine
MedStar Washington Hospital Center
Washington, D.C.

 

Researchers at the University of Chicago are conducting a multi-institutional study on how the diagnosis and treatment of thyroid cancer affects people’s quality of life in both the short term and the long-term.

If you have had thyroid cancer, your participation in this short survey will be greatly appreciated.

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to cooperate with the University of Chicago in this study.

We invite you to take part. Help increase knowledge about thyroid cancer and how it affects our lives.

Click here for the survey web page.

Thank you very much!