ThyCa NEWS NOTES – March 2012
In This Issue:
- Family in Philippines Tells Their Thyroid Cancer Story
- More Support Groups Formed
- Handbook Now in Chinese as well as English
- Caprelsa Approved in Europe
- Anaplastic Thyroid Cancer Clinical Trial
- Neck Check Awareness Shirts a Big Hit!
- Free Spring Workshops Coming Soon
- Follow ThyCa on Facebook and Twitter
- ThyCa’s Free Guestbook and Newsletter Subscription
- Support the Rally for Research
- Low-Iodine Recipe of the Month
- Join Us, Become a Member
- Seminar Held in Wisconsin
- Every Day
- About ThyCa News Notes
My son Luke was diagnosed with metastatic papillary thyroid cancer a few years ago and our world stopped…we were at a loss. He was only 6 years and 9 months old.
We also heard the familiar line that thyroid cancer was the easiest form of cancer to cure but in Luke’s case, it was not. Thyroid cancer in children is very rare here in the Philippines.
Having the fear of discovering worse things, I was not brave enough to search the Internet when we first heard about his cancer. I was only encouraged to do so because our oncologist had been doing the same (Luke was her first thyroid cancer case). She even printed some articles from the Pediatric ThyCa web site and gave them to me.
When I sent my first post to the Pediatric ThyCa Online Support Group, I received lots of replies from moms in just an hour.
I couldn’t describe how this made me feel. It was overwhelming. I had been searching for a pediatric support group here in our country, but there was none.
Finally, there were these moms who didn’t even know me but could fully understood how I felt. Their replies to all my questions served as a guide for our journey. Their thoughts about surgeons, endos, the low-iodine diet, radioactive iodine, and a lot more helped me and my husband in various decisions we had to make concerning Luke’s case. The ThyCa Pediatric Online Support Group also helped me to be in contact with the ThyCa Cebu City, Philippines, Support Group (although most members from the group are adult).
I am particularly thankful to Lauri for being my far-away friend. She always finds time for me. Whenever we have a problem with Luke’s treatment, she will contact some doctors and ask for information.
I am also thankful to the pediatric thyroid cancer specialists in the United States for graciously giving information, through Lauri. There are also volunteers who gave help when we first tried the low-iodine diet and who patiently answered my questions regarding radioactive iodine.
We are still fighting the battle against thyroid cancer. We still encounter complications and problems along our way, but because of the help of the Pediatric ThyCa Online Support Group, and our family, friends, and community here in Philippines, our burdens are less heavy. Someday, I hope I can say that Luke has won his battle and is cancer-free.
Editor’s Note: These are a few of ThyCa’s free resources for families with a child or teen with thyroid cancer:
- Pediatric Thyroid Cancer Web Site
- Pediatric Thyroid Cancer E-Mail Support Group
- Pediatric Backpacks for Children
Welcome to our 5 new local support groups in Alabama, California, and Florida.
Thank you to volunteers Diane Bible, Rita Bramhall, Christine Ciletti, Marla Friedman, Lois Lance, Ashley Maderr, Cheryl Moulton, Maureen Merrick Rose, and Candy Stevens for starting these groups.
For details about all the 90-plus local ThyCa Support Groups, go to our Support Groups page.
Thyroid Cancer Basics is now available in both English and Chinese. Its 50 pages are packed with helpful information and suggestions from physicians, patients, and caregivers. Download it free from our website (linked on the right side of the home page). Bound copies are also available in English, by mail, and will be available in Chinese later this year. It’s free also in bulk to physicians for your patients.
Caprelsa (vandetanib) is now approved in Europe, reports AstraZeneca and the European Commission. Caprelsa also received approval from the United States Food and Drug Administration last year. Developed by AstraZeneca, Caprelsa is for some patients with advanced medullary thyroid cancer.
A new Phase 1b clinical study is now recruiting patients with anaplastic thyroid cancer. More details are now on ThyCa’s web site, with a link to further study and contact information, at at www.thyca.org/news/anaclinical02-2012/.
Find out more about these colorful Running Shirts & T-Shirts on out Spirit Items page..
The free Neck Check Awareness Cards, plus more free awareness materials, are available here.
Thank you to Tina Descovich and the 11 members of Team Neck and Neck, for your inspiration and great efforts! See photos of Tina and her team on the Home Page & News section of www.thyca.org.
- Vineland, New Jersey – Saturday, April 21, 2012: New Jersey and Philadelphia Area Thyroid Cancer Survivors’ Workshop, from 8:30 a.m. to 4:00 p.m. Physician speakers and more. Details are on our Conferences page.
- Osage Beach, Missouri – Saturday, April 21, 2012: 8th Midwest Thyroid Cancer Survivors’ Workshop, from 8:15 a.m. to 4:15 p.m. The seven confirmed speakers include medical professionals, health resource specialists, thyroid cancer survivors, and more. Details are on our Conferences page.
- Silver Spring, Maryland — Saturday, May 12, 2012: 11th Annual Mid-Atlantic Thyroid Cancer Survivors’ Workshop from 8 a.m. to 5 p.m. Physician speakers and more.
- Every Week: Thyroid Cancer Support Groups meet in numerous locations. The complete schedule is available on our Support Groups page. If there’s no group near you, find out how ThyCa can help you start a new group. Just e-mail email@example.com.
- More Seminars and Workshops are being planned. Our Calendar has details.
I’ve often said that the only really good thing about getting thyroid cancer has been the people I’ve met, and the friends I’ve made whom I never would have met if I didn’t get thyroid cancer.
For the past more than 16 years I’ve met so many wonderful and caring people— others also coping with thyroid cancer, caregivers, dedicated and skilled medical professionals who have shared their expertise not only in my own care, but also for the education and well-being of everyone with thyroid cancer.
I’ve met people who have helped me grow as a person, and who’ve shared their greatness with me and with so many others. I’ve met wonderful people whom I can speak with and see every day, and, very sadly, I’ve met all too many people who’ve lost their lives, and whom I’ll always remember.
I cherish those who are here, and I greatly miss those who are no longer with us.
I know all of you have had similar experiences.
Like so many of you, my life is filled with ThyCa commitments and family commitments as well as caring for my own health. All these commitments are important in all our lives.
I encourage you to think of a friend whose health or life situation is down right now, or who is experiencing an ongoing difficult challenge in health, as a caregiver, or in some other way. Or someone who has helped you and given you support.
Pick up the telephone and say hello, or stop by for a visit, or send a card or online message if you’re not close enough to be there in person.
I’m sure that receiving your words of comfort and support, and, whenever possible, your caring presence with them, will make your friend feel better. I know it will improve your day.
So, consider adding a little joy and comfort to the lives of people you care about, and say hello.
By signing up in ThyCa’s free Guestbook, you’ll receive the latest news about thyroid cancer, new free publications, events, and more.
The standard of care for thyroid cancer has changed dramatically in the past few years. Research continues to make advances.
We want to help you stay connected and informed. Our mission is to be there for every person affected by thyroid cancer.
If you haven’t already signed up, we invite you to sign up today.
Thanks to generous contributions and special fundraising events, ThyCa has awarded new thyroid cancer research grants every year starting in 2003. These grants support our goal of cures for all thyroid cancer and a future free of thyroid cancer. We plan to award 3 new research grants and 3 continuation grants in 2012.
You’re invited to help support the Rally for Research. For details about the Rally for Research, donation opportunities, special events, Quarters for a Cure, and information about ThyCa’s past and future Research Grants, visit the Rally for Research page.
Roasted Bell Peppers
3 large sweet bell peppers, red or yellow
2 cloves of garlic
2 Tablespoons olive oil (or grapeseed oil)
1 Tablespoon balsamic vinegar
1 teaspoon honey
pinch of noniodized salt
These peppers go well as an appetizer or a dressing on salad.
Peppers: Wash the peppers and put on a baking rack. Bake in a 375-degree oven for approximately 40-60 minutes, until the skin turns dark. Take peppers out of the oven and let them cool. Take the skin off the peppers, cut the stems off, and clean out the seeds. Cut the peppers into bite-size strips.
Dressing: Chop garlic and mix well with olive oil (or grapeseed oil), balsamic vinegar, honey, and salt. Mix the peppers with the dressing.
Editor’s Note: Thank you 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:
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.
If you’d like to contribute your favorite recipe or tip, send it to firstname.lastname@example.org.
Join Us, 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.
Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world. Members receive our quarterly Membership Messenger newsletter.
Membership is open to everyone worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225). For our online Membership Form and our mailed Membership Form, go to our Membership page.
Thank you to Rebecca Sippel, M.D., Endocrine Surgeon, University of Wisconsin Hospital and Clinics, who spoke and answered questions at the ThyCa Madison, Wisconsin, Support Group Meeting on March 10. This free support group meets every month. Everyone interested is welcome to attend. Timothy Lau is the group’s volunteer facilitator. Details are the Madison, Wisconsin support group‘s page.
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), so click here to give.
Please share ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at email@example.com. Each ThyCa News Notes complete issue is also published on this web page: www.thyca.org/news/newsletters/.
Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.
Thank you to our writing, editing, and proofreading team for this issue: Leah Guljord, Junet H., Pat Paillard, Barbara Statas, Cherry Wunderlich, the recipe contributor, 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 national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals.
ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a national non- profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals.
Contact us for free awareness materials and information about our free services and special events. E-mail to firstname.lastname@example.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.