ThyCa NEWS NOTES - March 2013
03/2013In This Edition:
- Anaplastic Thyroid Cancer Handbook on the Web Site
- Levoxyl Supply News
- Spring Meetings: Meet Experts, Get Answers to your Questions
- Conference Preview: Save the Dates!
- Is there a Face-to-Face Support Group Near You?
- Jennifer’s Hike! 2,650 Miles To Raise Awareness and Funds
- Free Newsletters and Guestbook
- In Memory of Jo Walker
- Support ThyCa’s Rally for Research
- Low-Iodine Recipe of the Month
- Get Involved
- Latest Milestones
- Follow Us on Facebook and Twitter
- About ThyCa NEWS NOTES and ThyCa
Anaplastic Thyroid Cancer Handbook on the Web Site
The free handbook Anaplastic Thyroid Cancer (ATC) is available on www.thyca.org. This 40-page manual focuses on the rarest and most aggressive thyroid cancer, which is diagnosed in about 1% of all people with thyroid cancer.
Thanks very much to the numerous physician specialists, patients, and caregivers who developed and reviewed this valuable new resource.
This ATC publication explains how ATC is diagnosed and managed, critical decisions patients and caregivers need to consider, coping and support, communicating with the medical team, sources of further information, and much more.
It also tells how to join ThyCa’s free ATC E-Mail Support Group. This online group began in 1997. It is a place for sharing experiences, and giving and receiving emotional support and understanding from other families coping with ATC. Hundreds of ATC survivors and their caregivers participate in this e-mail group with the goal of making sure that everyone facing an ATC diagnosis will have the help of others coping with the same experience.
Download the Anaplastic Thyroid Cancer Handbook from the home page www.thyca.org. Soon individuals and medical professionals will be able to request FREE copies of the print edition through our web site. We mail all our free materials anywhere in the world.
The supply of Levoxyl, one of the brands of the thyroid hormone levothyroxine, has recently been in the news. The pharmaceutical company Pfizer, maker of Levoxyl, reports that it has a backorder for all strengths of Levoxyl at this time. Pfizer is working closely with the U.S. Food and Drug Administration (FDA) to address this situation. Pfizer will resume shipments of Levoxyl as soon as possible.
Spring Meetings: Meet Experts, Get Answers to your Questions
- Saturday, April 6, 2013. The Chicago/Midwest Thyroid Cancer Survivors’ Symposium with Physician Speakers. At the Robert H. Lurie Medical Research Center at Northwestern University, 303 East Superior Street, Chicago, Illinois. Details and free registration are now available at www.thyca.org/support/conferences/
- Saturday, April 13, 2013. In Kansas City, the Missouri/Midwest Thyroid Cancer Survivors’ Workshop will have Physician Experts, roundtables, plus free neck ultrasounds. At St. Joseph Medical Center, Community Education Wing, 1000 Carondelet Drive, Kansas City, MO. Get details and register online at www.thyca.org/support/conferences/
- Sunday, April 14, 2013. Long Island, New York. Donald Margouleff, M.D., Nuclear Medicine Physician and ThyCa Medical Advisor, will be the guest speaker at the ThyCa Long Island free support group meeting. Details at the group’s web page at www.thyca.org/sg/ny_manhasset.
- Monday, May 6, 2013. Neptune, New Jersey. Peter Mencel, M.D. will speak about Novel Chemotherapies for Patients with Metastatic Disease at the free support group meeting of the ThyCa Jersey Shore University Medical Center Support Group. Details at the group’s web page at www.thyca.org/sg/nj_neptune
- Saturday, June 22, 2013. The Mid-Atlantic Thyroid Cancer Survivors’ Workshop with physician speakers at Holy Cross Hospital, Silver Spring, Maryland.
- Every Day, Free one-hour Thyroid Cancer Webinars with experts, available online on www.thyca.org. Watch and listen wherever you live in the world.
Conference Preview: Save the Dates!
We hope to see you in Philadelphia, Pennsylvania, at the 16th Annual International Thyroid Cancer Survivors’ Conference, September 27-29, 2013.
We’re excited about the tremendous lineup of medical experts you’ll meet at the conference. They’re coming from M.D. Anderson Cancer Center, Massachusetts General Hospital, University of Pennsylvania, Children’s Hospital of Philadelphia, and numerous other leading thyroid cancer treatment and research programs.
This unique event features dozens of leading experts, plus coping-skills specialists, survivors/caregivers with all types of thyroid cancer, and more.
We’ll have more than 100 session choices: expert presentations, question and answer sessions, coping skills workshops, and peer-support roundtables.
Come for 1, 2, or all 3 days of learning, discovery, sharing experiences, camaraderie, and new friendships!
Once again, we’re pleased to announce that we’ve arranged a special $99 hotel room rate for conference attendees at the Clarion Hotel Conference Center, our conference hotel.
And remember, scholarships are available on request to cover the registration fee (simply check the scholarship box on the form). The registration form, hotel information, transportation directions, and more, are now on the web site.
Save the dates! We look forward to seeing you there. www.thyca.org/support/conferences/
Is there a Face-to-Face Support Group Near You?
Local thyroid cancer support groups are terrific ways to meet and get to know others in your community while sharing experiences, coping tips, information about local resources in your community, and encouragement.
Numerous groups meet every week. See if there is a group in your area by looking at www.thyca.org/sg/.
If you don’t see a group in your area, consider starting one.ThyCa can help you. Go to www.thyca.org/sg/ for information.
Jennifer’s Hike! 2,650 Miles To Raise Awareness and Funds
Hiking 20 miles a day, Jennifer Smart, thyroid cancer survivor, will soon start walking the entire 2,650 miles of the Pacific Crest Trail (PCT), to raise thyroid cancer awareness and funds for ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Jennifer plans to set off on her amazing trek in late April. She’ll hike the scenic trail from Canada to Mexico through the states of Washington, Oregon, and California. Her entire journey will take four to five months. She’ll provide us online updates, throughout her journey.
Why is Jennifer hiking for ThyCa?
“In 2006, as a newly diagnosed thyroid cancer patient,” she writes, “ThyCa: Thyroid Cancer Survivors’ Association was an incredibly valuable resource to me. Whether I was learning about this cancer on their website, attending a conference and meeting others, or downloading their low-iodine cookbook, ALL of it was FREE, and very helpful.”
When Jennifer first hiked the Pacific Crest Trail, in 2009, she writes, it was “in part, to recover from my thyroid cancer. It was physically and mentally challenging but the toil and fatigue were well worth the joy experienced, friends made and vistas seen.”
“Hiking the PCT was a pivotal moment in my life that provided a deep and profound perspective of the world in which we all live. Similarly, being a cancer survivor provides a lens through which life is viewed differently.”
Jennifer is dedicating her 2013 hike to raising thyroid cancer awareness and resources for past, present and future thyroid cancer patients.
Jennifer invites support and donations, and 100% of all donations received go to ThyCa: Thyroid Cancer Survivors’ Association, Inc. Her hike’s web site Journey Return (http://pctlionheart.wordpress.com/ ) has her story, photos, and a donation link.
Visit our News page and the Rally for Research page for a link to an article with photos, plus an additional link to Jennifer’s web site Journey Return.
Read Jennifer’s story and her plans, and how you can donate in support of her wonderful efforts.
Thank you, Jennifer!
Free Newsletters and Guestbook
We invite you to join our worldwide network. We want to help you stay connected and informed about thyroid cancer news. And, with your help, we’ll be there for every person affected by thyroid cancer. If you haven’t already signed up, we invite you to sign up today: www.thyca.org/support/guestbook/
We are saddened to tell you that Jo Walker of Arizona, longtime ThyCa volunteer and board member, passed away on January 31, 2013.
Jo was actively involved in ThyCa from its beginnings. She had been diagnosed with Hurthle cell thyroid cancer in 1994.
Jo attended her first annual Conferences in 2002, and attended everyone thereafter. She helped facilitate conference roundtables on coping with side effects of the new targeted therapies, as well as coping through humor. Our web site features one of her humorous poems. Jo served on the committees for publications and outreach, and as leader of ThyCa’s E-Mail Response Team, communicating and making friends around the world.
She also served many years on ThyCa’s Board of Directors, including service as Recording Secretary. In honor and recognition of Jo’s dedicated service, ThyCa has named her Board Member Emeritus.
Jo requested that donations be made to ThyCa in her memory in lieu of flowers. If you would like to make a memorial donation, visit www.thyca.org/donations/ --
Jo will be greatly missed.
Support ThyCa’s Rally for Research
Find out more about ThyCa’s Thyroid Cancer Research Grants, open to researchers anywhere in the world. More thyroid cancer research is urgently needed.
Find out how you can help. Visit our Rally for Research page.
Low-Iodine Recipe of the MonthContributed by Tim F.
Easy 40-minute Hamburger/Sandwich Buns
1 Tablespoon active dry yeast
½ Cup plus 1 Tablespoon warm water (105 to 110 degrees F)
2 Tablespoons vegetable oil
2 Tablespoons sugar
2 Tablespoons carton egg whites
½ Teaspoon salt
1 ½ cup all-purpose flour
Preheat oven to 425 degrees F. Line two baking sheets with parchment paper.
In a large bowl, add water and dissolve yeast. Add sugar, then oil, and let sit five minutes. (If yeast does not bubble and form “gunk” on the surface after 5 minutes, discard and try again.)
Add egg whites and salt, then flour. Mix until combined and the dough is slightly sticky. Scrape out onto a clean, floured surface and knead it, adding small amounts of flour if needed, until it no longer sticks to your hands.
Divide into quarters, then halve those pieces (or quarter them for slider buns!). Leave square, or roll into balls and flatten for round buns.
Transfer to cookie sheets, placing at least 2 inches apart, and cover with a paper towel. Allow dough to rise for a half-hour on the stove top, and then bake for 8-10 minutes at 425 degrees F.
For a denser bun, reduce the rise time and use a bit more oil. There are many ingredient substitutions to make these very versatile: replace all-purpose flour with wheat flour, or use bread flour and olive oil for a more Italian-style roll.
Tim writes, “First, thank you so much for the amazing cookbook. I am on my second low-iodine diet (thankfully this time for my one-year scan!) and I wanted to send along a recipe that I hope will help some folks. I noticed the cookbook has a lot of great bread recipes, and I had been making LID-safe bread in a machine, but I had a desire for hamburger buns to get that feeling of normalcy instead of eating a plain burger or a piece of chicken. They also make a great breakfast toasted with jelly. I know a lot of people have a hard time with yeast, but these are super-easy and a great introduction to yeast breads.”
Thank you, Tim! We will include your recipe in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.
Free and Downloadable
Download the 7th edition of the Low-Iodine Cookbook in English for free, with more than 340 favorite recipes from more than 150 generous volunteers.
The Cookbook is also available in:
Please remember, while you’re welcome to download and print the entire free low-iodine cookbook, you can also print just the pages you need.
This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. All the recipes are favorites of some of our ThyCa volunteers, who are sharing them with everyone, to make the low-iodine diet easy and tasty. The recipes are also great for family meals and for potlucks, any time.
To contribute your favorite recipe or tip, send it to recipes@thyca.org.
All of us are coping with thyroid cancer— as a survivor, a caregiver, a medical professional, or a friend. All of us are committed to greater awareness about thyroid cancer.
Three easy ways to increase awareness are:
- Always be on the alert for when someone mentions thyroid cancer. When that happens, mention ThyCa: Thyroid Cancer Survivors' Association, Inc. and our wide array of free support services, materials, and events, as well as our research fundraising and grants, open to researchers anywhere in the world.
- Ask us to mail you a small or large supply of ThyCa and thyroid cancer awareness materials to bring to your doctors, and to carry with you to share with others you meet.
- Add a simple signature to all your e-mails, such as:
- Free education, support services, and awareness materials
- September is Thyroid Cancer Awareness Month, sponsored by ThyCa
- 16th International Thyroid Cancer Survivors' Conference -- Philadelphia, Pennsylvania September 27-29, 2013
- Details on our website
These events and services are open to everyone, everywhere in the world!
We’re excited to report some of the latest milestones:
- More than 5,000 in our ThyCa Inspire Online Support Community
- More than 1,000 followers on Twitter
- Over 6,900 friends on Facebook
- More than 13,000 in our 12 E-mail listserv support groups
- More than 30,000 receive our newsletter!
- More than 500,000 website hits each month
Tell others about these and more great opportunities for connections, learning, and support, plus our many other free resources and opportunities. They’re all conveniently available at www.thyca.org
Follow us on Facebook and Twitter
Copyright (c) 2013 ThyCa: Thyroid Cancer Survivors' Association, Inc.
Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at publications@thyca.org.
Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.
Thank you to our writing, editing, and proofreading team for this issue: Tim F., Leah Guljord, Pat Paillard, Barb Statas, Cherry Wunderlich, and Gary Bloom.
The information in this newsletter is intended for educational purposes only. It is not intended, nor should it be interpreted, as medical advice or directions of any kind. Readers are advised to consult their own medical doctor(s) for all matters involving their health and medical care.
ThyCa: Thyroid Cancer Survivors' Association, Inc. is a non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals serving people worldwide and dedicated to education, support, communication, and fundraising for thyroid cancer research.
ThyCa sponsors the annual International Thyroid Cancer Survivors’ Conference, as well as Thyroid Cancer Awareness Month, a worldwide observance each September, plus year-round awareness campaigns, research funding, and thyroid cancer research grants.
Contact us for free materials and information. E-mail to thyca@thyca.org call toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.