ThyCa News Notes – March 2014

Contents

5K Run for ThyCa — Thank You!

On the morning of Sunday, March 16, 2014, George Washington University School of Medicine’s chapter of the Arnold Gold Humanism Society hosted a 5K Race and Walk at Rock Creek Park in Washington, D.C., to raise awareness of thyroid cancer.

All registration funds and donations supported ThyCa.  The Arnold Gold Humanism Society chose ThyCa in support of their classmate who was recently diagnosed with thyroid cancer. Anyone can still support this wonderful event. Go to our Rally for Research page for details and to donate.

Our special thanks to the volunteers of the George Washington University School of Medicine’s chapter of the Arnold Gold Humanism Society!

Your awareness and fundraising 5K Race was a lot of fun and really got the word out! 

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ThyCa Inspire Community Grows To Over 10,600 People

Thyroid cancer survivors from teenagers to people over age 90 are taking part in ThyCa’s Inspire Online Support Community. They live in all parts of the world. To find out more, and to join, visit our Support Groups web page.

Online support is an opportunity for people to send messages back and forth with fellow survivors going through their thyroid cancer journeys. It can be especially beneficial for people who either don’t live near a face-to-face support group, or are unable to attend the meetings.

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Support Group Starts 16th Year of Monthly Meetings

Congratulations and thank you to the ThyCa Washington, DC, Support Group, starting its 16th year of monthly meetings this April. This group has met in Silver Spring, Maryland, every month since April 1999.

Gary Bloom started this group, and co-facilitates it with Cal Pierce, Barbara Statas, and Gloria Keller, who will celebrate her 50th anniversary of her thyroid cancer diagnosis in early May 

More than 110 local ThyCa support groups serve communities around the United States and in Australia, Canada, Costa Rica, and Philippines. Find the web pages of all groups on our Local Support Groups page.  

If you are interested in starting a local group, we can help you. Send an e-mail to the ThyCa Support Groups Coordinator at support_coord@thyca.org.

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Free Mid-Atlantic Thyroid Cancer Workshop To Be Held on April 19

Kenneth D. Burman, M.D., Endocrinologist, ThyCa Medical Advisor, and past president of the American Thyroid Association, headlines the upcoming 13th Mid-Atlantic Thyroid Cancer Workshop, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The Mid-Atlantic Workshop will be held from 8 a.m. to 5 p.m. at Holy Cross Hospital, 1500 Forest Glen Road, Silver Spring, Maryland.

In addition to Dr. Burman, the program features Nishant Agrawal, M.D., Johns Hopkins Associate Professor of Otolaryngology-Head and Neck Surgery, and Oncology; Kanchan Kulkarni, M.D., co-editor of the second edition of the reference book Thyroid Cancer: A Guide for Patients; and Priya Kundra, M.D.

The program also includes sessions on coping skills and survivor/caregiver support roundtables 

Everyone interested in thyroid cancer is invited to attend for all or part of the day. Walk-in attendees are welcome, or register online in advance. More details will be posted on our Conferences page.  

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Free Midwest Thyroid Cancer Workshop To Be Held on April 26

The 10th Midwest Workshop, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc., will take place from 8 a.m. to 4:30 p.m. at the David C. Pratt Cancer Center (on Mercy Hospital grounds), 607 South New Ballas Road, St. Louis, MO.

The program features Endocrinologist Irini Veronikis, M.D., and Otolaryngolgist Brendan Stack, M.D. The program also includes sessions on coping skills and survivor/caregiver support roundtables 

Everyone interested in thyroid cancer is invited to attend for all or part of the day. Walk-in attendees are welcome, or register online in advance. More details will be posted on our Conferences page.   

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Thyroid Cancer Diagnosis and Treatment in the News

Journal and media articles have recently focused on the rise in thyroid cancer, and the possible reasons for it. JAMA’s Otolaryngology journal, San Francisco Chronicle, Clinical Oncology News, and WNCT9 TV in North Carolina are among the media discussing this topic.

At the recent CancerCare Webcast, Dr. R. Michael Tuttle, ThyCa Medical Advisor, noted that the increase is largely due to detecting small cancers (under 1 inch), though “that’s not the whole story.” There’s also a rise in bigger thyroid cancers. A team approach is used in treatment, which allows doctors to personalize patient care based on each person’s situation.

This is one of many topics you’re invited to discuss with the experts, at the many thyroid cancer events coming this month and this year. Visit our Calendar page for the latest list of educational events. We update the calendar frequently.

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New Planning Guide for Thyroid Cancer Awareness Month

There’s plenty of time to plan your participation in Thyroid Cancer Awareness Month, the worldwide event sponsored by ThyCa each September 

Get the free Planning Guide, downloadable from the top of the Raise Awareness page. It gives steps and tips for lots of possibilities for raising awareness.

You and your organization are invited to partner with us in this important event. Thank you!

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Diana’s Run, Walk, and Crawl for ThyCa

Diana Castro sent a photo, and wrote, “This is my run, walk, crawl 5K pic for the ThyCa virtual run. I did the Gladiator Rock-n-Run today in Pasadena. I literally ran, walked, and crawled.”

Thank you, Diana, for your terrific thyroid cancer awareness effort!

 

 

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Here’s How It Starts: From The Opposite of Everything

(Editor’s Note: Here are the first few paragraphs from the new novel titled The Opposite of Everything. A thyroid cancer survivor is the main character. The author is David Kalish, a medullary thyroid cancer survivor of nearly 20 years. This excerpt is reprinted with his permission. David will co-facilitate a roundtable on creating art for coping, at the 17th International Thyroid Cancer Survivors’ Conference, October 17-19, 2014, in Denver, Colorado.) 

Here’s how it starts. First, a person has his health. Heart. Relatively easy commute. Decent career. Sense of humor. On occasion, he eats a Big Mac for lunch. Half a pint of Ben & Jerry’s before bed. A general optimism pervades his Brooklyn neighborhood, outdoor cafes vying with baby strollers for sidewalk space. Then one morning he wakes up—and concludes the only way he’ll live another day is to do the opposite of everything that came before. 

Daniel Plotnick woke up.

It was April 1996, shortly before 7 a.m. Squinting into the light, he glanced across the bed sheets at his wife, Judy, and felt a pain in his neck.

An actual lump in his throat.

His groans woke her. She stared at the swelling in his neck and reassured him it should fade on its own. She compared the lump, right near his Adam’s apple, to a pimple inside her nose that goes away. Like a sudden thunderstorm, it should abruptly give way to sunshine. He tried to convince himself she was right. The young couple, after all, was married four months — too soon, presumably, for major hiccups. But the next day, Plotnick’s family physician weighed in against his wife’s rosy assessment. After examining the lump, he advised a battery of tests, and referred him to a higher-level doctor who, in turn, diagnosed Plotnick with the condition that would ultimately send him, and his life, into literal free-fall.

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Author David Kalish Donating Book Proceeds to ThyCa

David Kalish, author of the new novel titled The Opposite of Everything, is generously donating part of his book proceeds to ThyCa during April, during Thyroid Cancer Awareness Month in September, and during the week of the ThyCa Conference in October. Thank you very much, David!

David writes:

Hi Everyone, 

ThyCa: Thyroid Cancer Survivors’ Association has helped me through some rough times during my long struggle with Medullary Thyroid Cancer, and now I’d like to give something back. After three neck operations, chemotherapy, and experimental treatment, I’ve written a book, The Opposite of Everything, that’s a comic twist on my journey through cancer, divorce, treatment, and renewal. I believe that laughter is strong medicine, and would love to share my story with you.

As my thank you to this community I’ve arranged to donate one-half of proceeds from my book to ThyCa: Thyroid Cancer Survivors Association (www.thyca.org) during special times such as Head and Neck Cancer awareness week (in April), Thyroid Cancer Awareness month (September), and the week of ThyCa’s annual conference in October.

The Opposite of Everything is a humorous, romantic novel about the things that break our hearts — cancer, family difficulties, busted dreams — and the things that sustain us: love and second chances. It’s currently available on Amazon.com and I’d be delighted to see you at one of my book events this spring (www.davidkalishwriter.com). 

I also can’t wait to see my thyroid cancer friends at the annual conference in October, where I’ll be presenting along with Bill McClain on the subject of Art as Therapy.

It’s my pleasure to share this with you.

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Strokes for Hope Scramble

Ready to dust off and swing your golf clubs after a long cold and snowy winter?  

Well, spring is finally here in Pennsylvania, and warmer weather will soon be here as well, as we get out on the golf course. Come support and promote thyroid cancer awareness while shooting a round of golf!

The 2nd Annual Strokes for Hope Scramble is scheduled for Saturday, June 21, 2014 at the Grand View Golf Club in North Braddock, Pennsylvania.  A great day of golf, food and raising Thyroid Cancer Awareness is planned.  Proceeds will benefit ThyCa: Thyroid Cancer Survivors’ Association.

Whether or not you can attend, you can support this great event! If you’d like to sign up for the golf scramble, please e-mail se.jordan@hotmail.com and reference “Stroke For Hope Scramble” in the subject line of the e-mail.  Registration and entry fees are due by May 17th.  

Or visit our Rally for Research page, where we have posted more details.

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My Journey with Thyroid Cancer

Part 1, First Steps Toward Diagnosis

By Cara B.

Each September brings Thyroid Cancer Awareness Month. Two years ago, I didn’t know how important this month would become to me. However, when I was diagnosed with papillary thyroid cancer, my whole life changed.

I’m sharing my story to help raise awareness of our disease.

It all started in January 2012. I got a strange feeling in my throat while I was driving. I told my mom about it. Several days passed, and the feeling remained. The day before I was supposed to return to college, I told my dad about it. He encouraged me to find an ENT at the college town. 

When I told the ENT what I was experiencing, he felt my neck and told me that the left lobe of my thyroid was enlarged. He told me that I needed an ultrasound, and possibly a biopsy depending on what the ultrasound showed.

I was terrified when I heard biopsy. I immediately thought cancer. I had millions of thoughts running through my head. Why is my thyroid enlarged?  Am I sick?  Do I have cancer?  I can’t have cancer!  I’m only 20! 

The next few days dragged on. When the technician took me into the room, I asked her if I was going to be able to get the results that day. Unfortunately, she said I would have to wait until I went back to my doctor. I guess she saw the stress on my face and offered to see if the radiologist would talk to me after he looked at the images.

After about twenty minutes, the radiologist came and told me that I had a large cyst on the left lobe of my thyroid and a few solid nodules on the right lobe. The cyst was pressing against my esophagus, which was why I was having that weird feeling in my throat. He told me that cysts can usually be drained. As for the nodules on my right lobe, he said that I shouldn’t worry about them since they were small. I left somewhat relieved.

The following week, I returned to the ENT doctor. We agreed on an aspiration of the cyst. He also said he would try to take a sample of the nodules on the right. The doctor ended up draining two vials of fluid. However, he was unable to get a good sample of the nodules.

A few days later, I started to get that weird feeling in my throat again. All I could think was, “Crap.”  The doctor confirmed that my cyst had refilled. He brought in another doctor to look at my neck. They agreed that surgery was my only option since the cyst refilled.

 He began to explain the risks that could occur during a thyroidectomy. He suggested that I only get the left lobe removed, and to have a biopsy of my right lobe.  When I left, my head was spinning. Surgery?!  All I could think was that I didn’t have time for surgery!  I had classes, exams, labs. I was a wreck.

When I told my parents what the doctor said, they both wanted me to get a second opinion. The following week, I went to see an endocrinologist. He viewed my ultrasound photos, felt my neck, and came to the same conclusion.

The surgeon would only remove the right lobe if the pathology results of the left lobe came back problematic. We scheduled my surgery the Monday of my spring break, because I was determined not to miss any classes.

(Editor’s Note: Cara’s full story will appear on www.thyca.org. Thank you, Cara, for helping to raise awareness. For everyone interested in helping to raise awareness, get free tips and materials, and download the free Planning Guide from the top of ThyCa’s Raise Awareness page. To share your story, send it to publications@thyca.org).

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More Educational Events Coming Soon

Visit our Calendar page for more details.  We update it frequently.

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Low-Iodine Favorites — From Facebook Friends

Here are a few of more than 150 favorites, suggestions, and comments recently posted on our Facebook page.

Guacamole for sure! – Cindy M.

Unsalted potato chips and homemade bread. My husband also made seitan from scratch for some protein since I am vegetarian. – Tracy P.

My husband made me the most fabulous LID blueberry muffins! Satisfied my sweet tooth and carb craving like nothing else. – Tiffany P.

Egg white omelet with veggies – Elzette L.

Fresh salsa with baked matzo chips sprinkled w/ herbs and spices. And of course wine, to forget about how miserable that diet was! – Stephanie T.

Salt-free peanut butter with rice cakes. Pumpkin bread that I modified. Lots of fruit and veggies. – Janet S.P. 

Meatloaf and banana muffins were excellent. Heinz has a no-salt ketchup which was great for the meatloaf – Carey S.M.

I really just lived on fried potatoes because that LID diet was worse than my total thyroidectomy and the third of my left lung removed. I just returned from my one-year check up and all is good and I feel great. – Dan H.

I lived on salt free peanut butter and unsalted matzo for snacks and such. Dinners I cooked as normal avoiding the major foods but used kosher or noniodized salt. Oh we did make some low iodine pancakes with coconut milk that were very, very tasty! – Stephanie R.H.

I referred to the cookbook everyday while on the LID! What a Godsend it was! I love the taco seasoning mix recipe. It tastes soooo much better than the store bought envelope kind. I’ve been on “the diet” twice now and probably again in the Spring! But as I always have to say, I will do what’s necessary to get through this journey! – Marilyn M.S.

Unsalted almond butter on apples. – Nicole B.

The entire cookbook is remarkable! I use it when I’m on the diet … and not! I’ve given it to friends as well. We thyroid cancer survivors are great cooks! – Karen L.

Thank you to everyone for your tips and suggestions. We’ll add new recipes plus more meal and snack tips to the next edition of the cookbook. The cookbook is free and downloadable from our web site in English, Spanish, and French.

To contribute your original recipe, e-mail it to us at recipes@thyca.org.

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Over 10,000 … Facebook Likes, That Is!

The power of joining together online, or face-to-face in our support groups, workshops, conferences, and webinars is immeasurable.

To all of you, our friends, fans, followers, volunteers, advisors, supporters…Thank You!

Follow Us on Facebook and 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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Invitation: Become a Member

No one should have to face a diagnosis of thyroid cancer alone. Your membership dues will support ThyCa’s efforts to provide our services to survivors and their families around the world. You may join as a 1-year, 2-year, or lifetime member of ThyCa.

Membership is open to anyone interested in thyroid cancer and supporting ThyCa’s efforts. To join, online or by mail, visit our Membership page.

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Every Day

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

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

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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. Each complete issue is also published on our Newsletters page. 

Thank you to our writing, editing, and proofreading team for this issue: Cara B., Diana Castro, Tom Engle, Leah Guljord, David Kalish, Pat Paillard, the recipe/tip contributors, Barb Statas,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.

Genzyme announced on March 26, 2014, that the U.S. Food and Drug Administration (FDA) has approved the use of Thyrogen® (thyrotropin alfa for injection) in connection with a widened dose range of radioactive iodine (RAI) when used for thyroid remnant ablation. Genzyme’s announcement is here.

The 10th Midwest Workshop, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc., will take place from 8 a.m. to 4:30 p.m. at the David C. Pratt Cancer Center (on Mercy Hospital grounds), 607 South New Ballas Road, St. Louis, MO. 

The program features Endocrinologist Irini Veronikis, M.D., and Otolaryngolgist Brendan Stack, M.D.  Additional physician speakers about thyroid cancer care are being recruited. 

The program also includes sessions on coping skills and survivor/caregiver support roundtables. 

Everyone interested in thyroid cancer is invited to attend for all or part of the day. Walk-in attendees are welcome, or register online in advance. More details will be posted on our Conferences page.

Kenneth D. Burman, M.D., Endocrinologist, ThyCa Medical Advisor, and past president of the American Thyroid Association, headlines the upcoming 13th Mid-Atlantic Thyroid Cancer Workshop, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.  

The Mid-Atlantic Workshop will be held from 8 a.m. to 5 p.m. at Holy Cross Hospital, 1500 Forest Glen Road, Silver Spring, Maryland. 

In addition to Dr. Burman, the program features Kanchan Kulkarni, M.D., co-editor of Thyroid Cancer: A Guide for Patients and Priya Kundra, M.D., all pictured here. Additional physician speakers are being recruited to lead sessions about thyroid cancer care. 

The program also includes sessions coping skills and survivor/caregiver support roundtables. 

Everyone interested in thyroid cancer is invited to attend for all or part of the day. Walk-in attendees are welcome, or register online in advance. More details will be posted aon our Conferences page.

Our special thanks to the volunteers of the George Washington University School of Medicine’s chapter of the Arnold Gold Humanism Society!

Your awareness and fundraising 5K Race on March 16th in Washington, D.C., was a lot of fun and really got the word out! 

Ready to dust off and swing your golf clubs after a long cold and snowy winter?  

Well, spring is finally here in Pennsylvania, and warmer weather will soon be here as well, as we get out on the golf course. Come support and promote thyroid cancer awareness while shooting a round of golf! 

The 2nd Annual Strokes for Hope Scramble is scheduled for Saturday, June 21, 2014 at the Grand View Golf Club in North Braddock, Pennsylvania.  A great day of golf, food and raising Thyroid Cancer Awareness is planned.  Proceeds will benefit ThyCa: Thyroid Cancer Survivors’ Association. 

Whether or not you can attend, you can support this great event! If you’d like to sign up for the golf scramble, please e-mail se.jordan@hotmail.com and reference “Strokes For Hope Scramble” in the subject line of the e-mail.  Registration and entry fees are due by May 17th.  

Or visit our Rally for Research Page, for the donation link, and more ways to support the Rally for Research. 

David Kalish, medullary thyroid cancer survivor of nearly 20 years, is the author of the new novel titled The Opposite of Everything. In the last newsletter, we published an excerpt with his permission.

David will co-facilitate a roundtable with Bill McClain on creating art for coping, at the 17th International Thyroid Cancer Survivors’ Conference, October 17-19, 2014, in Denver, Colorado.

We thank David for generously donating part of his book proceeds to ThyCa. 

David writes: 

Hi Everyone,  

ThyCa: Thyroid Cancer Survivors’ Association has helped me through some rough times during my long struggle with Medullary Thyroid Cancer, and now I’d like to give something back. After three neck operations, chemotherapy, and experimental treatment, I’ve written a book, The Opposite of Everything, that’s a comic twist on my journey through cancer, divorce, treatment, and renewal. I believe that laughter is strong medicine, and would love to share my story with you. 

As my thank you to this community I’ve arranged to donate one-half of proceeds from my book to ThyCa: Thyroid Cancer Survivors Association (www.thyca.org) during special times such as Head and Neck Cancer awareness week (in April), Thyroid Cancer Awareness month (September), and the week of ThyCa’s annual conference in October. 

The Opposite of Everything is a humorous, romantic novel about the things that break our hearts — cancer, family difficulties, busted dreams — and the things that sustain us: love and second chances. It’s currently available on Amazon.com and I’d be delighted to see you at one of my book events this spring (www.davidkalishwriter.com).  

I also can’t wait to see my thyroid cancer friends at the annual conference in October, where I’ll be presenting along with Bill McClain on the subject of Art as Therapy. 

It’s my pleasure to share this with you. 

A 5K for ThyCa
Run, Walk, or Donate From Your Home
Sunday, March 16, 2014
Hosted by George Washington University School of Medicine’s chapter of the Arnold Gold Humanism Society 

Race Details and Route 

Dear Washington, DC, Community: 

Thank you to everyone who has already shown interest and support of our 5K for ThyCa and thyroid cancer awareness!  

Please plan to join us on Sunday, March 16th!

What: A 5K Race to raise awareness of thyroid cancer. Running, walking, and prancersicing are all acceptable!

Where: Rock Creek Park

When: Sunday, March 16, 2014.  Arrive at 7:30 a.m. to sign-in and stretch. Start time is 8 a.m.  All will finish strong by 9:30 a.m.!

Why: To support ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) a non-profit organization that supports individuals affected by thyroid cancer, as well as providing free publications and educational events, plus funding for research on thyroid cancer.  We chose ThyCa specifically in support of our classmate who was recently diagnosed with thyroid cancer.

Who: Hosted by George Washington University School of Medicine’s chapter of the Arnold Gold Humanism Society

 Registration:

We are asking for a minimum $25 to participate. All funds will be donated to ThyCa. 

A. If You Plan to Attend and Take Part:

Here are the 2 steps:

1.  Please register/donate by clicking this link.

(Or else fill out the mail-in form that will be attached to this web page, and mail it to ThyCa) and indicate that you would like the donation to be in honor of “GWU Med.” )

 2. Please also sign up here.

so that we can look for you on Race Day, and match your registration to your donation: 

B. If You Cannot Attend and Would Still Like To Donate,

 please Click on the same link     

and indicate “GWU Med” to donate.

Thank you so much for your support!  We would love to have the whole community involved.

Please forward this message and spread the word to your family and friends.

Best,

GWU Gold Humanism Society 

Race Details and RouteUpdate: March 14th

Hello everyone!

There’s still time to take part, donate from your home, or do both, for the 5K for ThyCa this Sunday, March 16th, in Rock Creek Park in Washington, DC. 

If you plan to attend, arrival time is 7:30 a.m., and the 5K starts at 8 a.m. If you’ve already signed up to race, or have donated, thank you very much.

Here are more details.

The Route

We have updates regarding the route: please see the attached document for directions to the starting point and the 5K race route.

The starting location will be near the park entrance to Rock Creek Park at the intersection of 16th street and Kennedy.  We will have signs and people who will direct you to the exact starting position!   

Directions 

Driving:

From Downtown Washington, DC

  • Take 16th Street all the way up to Kennedy Street NW
  • Turn left onto Kennedy Street NW
  • Take the first left into parking area (you will see the tennis stadium court)

Public transportation:

There are several buses that are available that travel along 16th street.

T-shirts

T-shirts will be distributed on race day.  Be sure to arrive on-time (7:30 a.m.) to receive a t-shirt; we have a limited amount!

Donations

If you have already donated, THANK YOU!  If you have not, please be sure to donate before race day.  We have a list from ThyCa of those who have donated, and we will cross-reference this list when you register.  IMPORTANTLY, the park service does not allow transactions on the site, so please make sure to make your donation before Sunday. 

You can donate here.

Indicate “GWU MED” so that your name will be listed at registration. 

Continue to spread the word and encourage your friends and family to join!

Thank you,

The 5K Hosts and Organizers 

Gold Humanism Society,
GWU chapter
George Washington University
School of Medicine, 2014

Contents

 

Recent News Report on a New Approach to Cancer Treatment 

CBS Sunday Morning News with Charles Osgood featured a new treatment approach on its February 16, 2014 program.

Dr. Ross Cagan and colleagues used genome sequencing of tumor from Mark B., who has medullary thyroid cancer, to identify a combination of drugs (all approved by the FDA, although not necessarily for MTC) showing potential for effectiveness with the least side effects.

Dr. Cagan spoke at the 2013 International Thyroid Cancer Survivors’ Conference about this approach. It has promise for all types of cancer.

In case you missed the news segment about Dr. Cagan’s program, you can find it here.

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Levoxyl® Update

Levoxyl® (levothyroxine sodium) will again be available on or around March 3, 2014, Pfizer reported on February 4, 2014. 

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Clinical Trial of Lenvatinib

In news of particular interest to those with RAI-resistant differentiated thyroid cancer (papillary, follicular, and their variants), researchers recently reported: “Compared to placebo, lenvatinib showed a highly statistically significant improvement in progression free survival in patients with radioiodine-refractory differentiated thyroid cancer.” More information is here. 

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Find the Latest Information on Clinical Trials 

We have information and links for finding clinical trials, as well as the resource, Ten Things to Know About Treatment Clinical Trials.  

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News about a Gene Test

MIT’s Technology Review recently reported on Veracyte’s latest gene test to guide thyroid cancer surgery. 

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Rare Diseases Day 

February 28 is worldwide Rare Diseases Day, coordinated by Eurordis (Rare Diseases Europe) with US sponsorship by the National Organization for Rare Disorders. ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to partner in support of this observance.

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Free Web and Telephone Workshop 

On Friday, March 7, use your computer or your telephone to watch and listen to a free workshop from 1:30 to 2:30 p.m. Eastern Time. Speakers for this Update on Thyroid Cancer include R. Michael Tuttle, M.D., ThyCa Medical Advisor; Krzysztof Misiukiewicz, M.D., and Sarah Kelly, M.S.W. The workshop is sponsored by CancerCare, and ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to collaborate with CancerCare in this educational event. Register online, 

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Welcome to More New Local Support Groups 

We’re pleased to announce that new ThyCa Support Groups have formed in Mississippi, New Mexico, and Texas. Thank you to Randy Buse, Pam Cheval, Teresa Hasse, & Phyllis Marquez for starting these new groups.

For these and over 100 more groups in the United States, plus groups in Australia, Canada, Costa Rica, & Philippines, visit our Support Groups page.There are groups meeting every week. The volunteer leaders of each group are available for e-mail & phone support as well.

Our support groups are free and open to any and all survivors and their families and friends. All groups allow people to walk in without needing to pre-register. People share thyroid cancer information, their experiences with their thyroid cancer, and insights on how they are coping with thyroid cancer, and support 

Want to start a group in your area? Either contact the ThyCa Support Group Coordinator at support_coord@thyca.org or fill out the form you’ll find on our Support Groups page. 

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Save the Date! 

Free Spring Workshops with Physician Speakers, Thyroid Cancer Experts, Roundtables, and more!

  • Saturday, April 19, 2014, 8 a.m. to 5 p.m. The 13th Annual Mid-Atlantic Thyroid Cancer Survivors’ Workshop. Silver Spring, Maryland.
  • Saturday, April 26, 2014. 8 a.m. to 4:30 p.m. The 10th Midwest Thyroid Cancer Survivors’ Workshop. St. Louis, Missouri. 

Plan to attend! Details and online registration are now available.

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Save the Date!  International Thyroid Cancer Survivors’ Conference
October 17-19, 2014 

Plan to attend the premier event for patients, caregivers, and thyroid cancer experts, for 3 great days of learning, getting answers to your questions, and getting to know others coping with thyroid cancer. The conference also features numerous specialists in coping with the many practical and emotional challenges of thyroid cancer.

It’s not too early to start planning to attend the 17th International Thyroid Cancer Survivors’ Conference, October 17-19, 2014, at the Doubletree by Hilton Denver Hotel, 3203 Quebec Street, Denver, CO 80207.

Get the details and help spread the word.  Share the flyer from the conference homepage.

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The Pediatric Backpack Project —E-Mail from a Grandmother

My grandson is 6 and has been diagnosed with Thyroid Cancer.  He underwent an 8-hour surgery. He is a very loving affectionate child who needs his cuddle time, no matter what time of day or night. 

While I don’t know how he is going to handle being isolated, we will take care of him after he gets the radioactive iodine. 

I found ThyCa’s wonderful web site and the link for the backpack project.  I read and was moved by Tim’s story and cried like a baby. The items included in the pack are so well thought out and things that only someone who has been through the treatment would know to recommend to make it easier for the next person. 

Thank you, from all of us, for making our journey more manageable. If it is possible, could he receive a backpack?

Again, I really appreciate what you are doing. 

(Editor’s Note: For more information about the Pediatric Backpack Project, click here. ThyCa and this project serve children and teens with thyroid cancer, and their families, worldwide, free of charge. 

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Rally for Research News

Now on our web site: the Rally for Research News Notes newsletter.

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 will award 3 new grants for thyroid cancer research in 2014. ThyCa invites everyone to join us in our quest to find cures for all thyroid cancer. 

To find out how you can help the 2014 ThyCa Rally for Research, click here. 

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Follow Us on Facebook and Twitter

We’re now over 9,500 strong on the ThyCa Facebook page and over 1,700 on Twitter!

More Invitations:

  • If you’re not on Facebook, you may join at any time. It’s 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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Low-Iodine Recipe of the Month – Waldorf Salad
Contributed by Sharon M. 

Waldorf Salad

lettuce
1/2 stalk celery, sliced
1 apple, cored and chopped
1/4 cup raisins
1/3 cup walnuts
Either blender mayonnaise from the ThyCa Cookbook
or Mashed avocado

Tear lettuce into individual salad bowl or plate.  Sprinkle with celery, apple, raisins, and walnuts. Top with blender mayonnaise from the ThyCa cookbook, or, I found that I liked the mashed avocado just as well. 

Sharon writes, “First, 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!”

“Lunches seem the hardest for me.  The Waldorf Salad was a life saver.”

Thank you, Sharon, for contributing this recipe! We will include it 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.

Thank you!

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Have you signed our Guestbook?

It’s free! Sign up and you’ll be put 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 upon request!

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Invitation: Become a Member

No one should have to face a diagnosis of thyroid cancer alone. Your membership will support ThyCa’s efforts to reach other survivors and their families around the world 

Membership is open to anyone interested in thyroid cancer and supporting ThyCa’s efforts. To join, online or by mail, visit our Membership page.

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Every Day

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

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

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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. Each complete issue is also published on this web page: www.thyca.org/newsletters.htm.
 
Thank you to our writing, editing, and proofreading team for this issue: Tom Engle, 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.  

Contents

New Record Diagnosed with Thyroid Cancer

It pains us to report that a new record total of 62,980 people will be diagnosed with thyroid cancer in 2014 in the United States. More than 200,000 people will be diagnosed worldwide this year.

Please continue to help us raise awareness (share this newsletter, our materials, and our web site: www.thyca.org) and encourage people to have their neck checked by a medical professional.

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Skype Brings People Together

In December, two people in Colombia, South America, used Skype to take part in the meeting of the ThyCa Orange County (California) Support Group. The group’s facilitators are Shilo Bartlett, Anne MacPherson, and Bart Bartlett. Thank you, Shilo, Anne, and Bart, for making this possible!

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Welcome to our Newest Local Support Group

ThyCa South Bend, Indiana, joins our network of more than 100 support groups in 5 countries. See if there is a group in your area.

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.

Want to start a group in your area? Either contact the ThyCa Support Group Coordinator at support_coord@thyca.org or else fill out the form you’ll find on our Support Groups page.

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Rally for Research News

Now on our web site: the Rally for Research News Notes newsletter.

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 research grants every year starting in 2003.

This year, 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 award 3 new grants for thyroid cancer research in 2014. Each grant will be for 2 years. Grant recipients selected by an independent expert panel of the American Thyroid Association.  The deadline for the summary proposals is January 31, 2014. 

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

Find out more about the ThyCa Research Funds, the annual Rally for Research and how you can help. 

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From the E-Mail Inbox

From Florida
Could you please send an info packet to my parents…. I would like them to have a better understanding of what I am going through. I was diagnosed in July with papillary carcinoma and had a right thyroidectomy and recently a left. I will go through RAI in 5 weeks.

From China
I am here in Dalian, China; my mother was diagnosed for thyroid cancer…..I have received the Chinese Thyroid Cancer Basics Handbook. It is very useful to my mother. Thank you very much! 

From California
I would like to request that you send me 50 of the neck check cards to pass out to my friends and family. 

From New Jersey
I appreciate what a great resource ThyCa is for us newbies, and I appreciate even more that you took your personal time to help.

From Northern Ireland
My 16-year-old daughter has just been diagnosed with thyroid cancer. I would really appreciate information from a child’s point of view for her to read. (Editor’s Note: ThyCa sent her Pediatric Backpack with Tim’s Tips for Children and Teens with Thyroid Cancer.)

From Pennsylvania
Please send 50 English and 20 Spanish Thyroid Cancer Basics. (Editor’s Note: This came from a health educator at a cancer treatment center in Pennsylvania)

From another correspondent
Thank you so much for all the FREE literature you sent for me to share when I speak in February! I truly appreciate it!

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Coming Events — Mark Your Calendars!

January is Thyroid Awareness Month, for all thyroid diseases. Sponsored by the American Association of Clinical Endocrinologists, and supported by ThyCa.

Saturday, February 1
Redondo Beach, California.  Free Seminar. Dr. Dennis Maceri, thyroid cancer surgeon at Keck Medical Center at the University of Southern California, will be the guest speaker at the February 1 meeting of the ThyCa South Bay Support Group from 10 a.m. to noon.  Monday, February 3

Neptune, New Jersey. Free Seminar on Management of Lymph Nodes in Thyroid Cancer, with Sunil Asnani, M.D., from 6 p.m. to 7:30 p.m. at the meeting of the ThyCa Jersey Shore University Medical Center Support Group. 

February 28
Worldwide Rare Diseases Day. Coordinated by Eurordis (Rare Diseases Europe) with U.S. sponsorship by the National Organization for Rare Disorders. ThyCa: Thyroid Cancer Survivors’ Association, Inc., is pleased to partner in support of this observance. 

Friday, March 7
Web and Telephone Free Workshop from 1:30 to 2:30 p.m. Eastern Time. Update on Thyroid Cancer with R. Michael Tuttle, M.D., ThyCa Medical Advisor; Krzysztof Misiukiewicz, M.D., and Sarah Kelly, M.S.W. Sponsored by CancerCare in collaboration with ThyCa: Thyroid Cancer Survivors’ Association, Inc., and other organizations. Register online.

Find more thyroid cancer events on our Calendar, linked from our Home page: www.thyca.org

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Save the Dates! Free Spring Workshops

Physician Speakers, Other Specialists, Roundtables, and more!

  • Mid-Atlantic Thyroid Cancer Survivors’ Workshop. Silver Spring, Maryland. Saturday, April 19, 2014.
  • Midwest Thyroid Cancer Survivors’ Workshop. St. Louis, Missouri. Saturday, April 26, 2014.

Plan to attend! Details soon to be added to our web site www.thyca.org!

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The International Conference—Save the Date!

Dreaming of Denver … It’s not too early to start planning to attend the 17th International Thyroid Cancer Survivors’ Conference, October 17-19, 2014, at the Doubletree by Hilton Denver Hotel, 3203 Quebec Street, Denver, CO 80207. Get the details and share the flyer, available on the conference homepage.

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ThyCa Pins, Wristbands, Shirts, and More – Show your Spirit!

Are you aware that ThyCa has many gift items available for sale?  These items are named “Spirit Items” because we show our ThyCa Spirit and promote thyroid cancer awareness when we wear, display, or give these items.  We periodically add new items and phase out others.  Click on the link and it will take you to the ThyCa Spirit Items page, where you can shop to your heart’s content.

Have an idea for a new item? Let us know at spirit@thyca.org 

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Have you signed our Guestbook?

It’s free! Sign up and you’ll be put 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 upon request! 

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Invitation to Facebook and Twitter

We’re now over 9,500 strong on the ThyCa Facebook page and over 1,700 on Twitter!

More Invitations:

  • If you’re not on Facebook, you may join at any time. It’s 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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Low-Iodine Recipe of the Month
Contributed by Karen C.

Baked Oatmeal

Mix the following:

4 egg whites
1/2 cup oil
1 cup sugar

Add

3 cups oatmeal (rolled oats)
1 cup milk substitute (I used the nutty milk recipe in the ThyCa Low-Iodine Cookbook)
2 teaspoons baking powder
Pinch of kosher salt

Mix together

Pour into 2-quart baking dish (do not spray the dish)

Bake uncovered for 30 minutes at 350 degrees F

You can refrigerate it and just heat it up in the microwave.  You can add brown sugar, walnuts or raisins (or whatever you like).

Karen writes, “The low iodine cookbook is Great! It made it very easy to make delicious meals for my husband. I wanted to share a recipe that we modified to fit the diet. My husband loved it.” 

Thank you, Karen, for contributing this recipe! We will include it 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.

top of page

Invitation: Become a Member

No one should have to face a diagnosis of thyroid cancer alone. Your membership will support ThyCa’s efforts to reach other survivors and their families around the world.

Membership is open to anyone interested in thyroid cancer and supporting ThyCa’s efforts. To join, online or by mail, visit our Membership page.

top of page

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). 

top of page

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. Each complete issue is also published on this web page: www.thyca.org/newsletters.htm.
 
Thank you to our writing, editing, and proofreading team for this issue: Karen C. Leah Guljord, Pat Paillard, Barb Statas, Cherry Wunderlich, and Gary Bloom.

The information in this newsletter is intended for educational purposes only. It is not intended, nor should it be interpreted, as medical advice or directions of any kind. Readers are advised to consult their own medical doctor(s) for all matters involving their health and medical care.

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

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

Contact us for free materials and information. E-mail to thyca@thyca.org call toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.