ThyCa NEWS NOTES – November 2008
IN THIS ISSUE
- More Than 80 Local Support Groups Serve Survivors and Caregivers
- Person-To-Person Network Serves Survivors Around the Globe
- Genetic Factors and Papillary Thyroid Cancer
- Hope and Help When Anaplastic Thyroid Cancer Strikes
- From Our E-Mail Inbox
- Our Free Guestbook
- ThyCa Is In the Combined Federal Campaign
- Low-Iodine Recipe of the Month
- Have You Visited the Web Site Lately?
- Become a ThyCa Member!
- Want To Volunteer?
- Thank You From ThyCa
- Every Day…
- Calendar of Coming Events
- About ThyCa News Notes
More Than 80 Local Support Groups Serve Survivors and Caregivers
Welcome to our newest Support Group, ThyCa Solano County, California. This new group meets in Benicia, California.
The ThyCa Midsouth Group in Memphis, Tennessee, has a new schedule for its 2009 meetings.
These and more than 80 other communities around the United States and in Costa Rica and Philippines have local thyroid cancer support groups .
You’re cordially invited to contact the group facilitator nearest you and attend meetings. At local support group meetings, you have the opportunity meet and talk with others in your community face to face. The participants share experiences, strength, and hope. You learn more about your community’s health care resources. You experience camaraderie and connections with others who live near you and are also coping with thyroid cancer.
Family members and friends are welcome to attend. Each local support group is facilitated by one or more ThyCa volunteers.
You’ll find each group’s meeting schedule, location, facilitator contact information, and other details on the group’s web page. The Find Support section of our web site connects you will all the local support groups.
Person-To-Person Network Serves Survivors Around the Globe
Thyroid cancer survivors around the United States and around the globe receive one-to-one support through ThyCa’s Person To Person Network.
Our Person to Person Network volunteers believe that no person should have to face thyroid cancer alone. We are a support network of thyroid cancer survivors who support the emotional and psychological needs of people with thyroid cancer, as well as their families and caregivers.
We match people with thyroid cancer as closely as possible with a volunteer who has experience with the same form of thyroid cancer.
Volunteers answer questions based on their own experiences and offer insights on how they are coping with thyroid cancer. They offer an empathetic listening ear to others in the same situation. Volunteers do not give medical advice or medical opinions of any kind. They are not health professionals and do not offer guidance for individual situations. They simply share their experiences and offer emotional support.
The Person to Person Network offers this support service free of charge.
Peggy Melton, facilitator of the ThyCa Dallas, Texas, Support Group, is ThyCa’s Director of the Person To Person Network.
Wherever you are around the world, we will try to find a volunteer to share and offer support. To find out more and ask to be matched to a volunteer, visit our Person to Person Network page.
Genetic Factors and Papillary Thyroid Cancer—An Update on Research Funded by ThyCa
Your Research Fund Donations Are Making a Difference!
ThyCa Grant Recipient Krystian Jazdzewski, M.D., Ph.D., and his research team are searching for genetic factors that predispose those to papillary thyroid carcinoma (PTC). This topic is important because an inherited predisposition to differentiated thyroid cancer is very strong, one of the highest of all cancers (3- to 8-fold higher risk for first-degree relatives than in general population).
2007 ThyCa Grant Recipient and 2008 ThyCa Grant Renewal Recipient
Krystian Jazdzewski, M.D., Ph.D
Assistant Professor, Medical University of Gdansk, Poland
Visiting Scientist, The Ohio State University, Columbus, Ohio
Project: The Role of miR146a in Papillary Thyroid Carcinoma
Research Summary
Papillary thyroid carcinoma (PTC), the most common form of thyroid cancer (accounting for 80% of thyroid cancers) seems to frequently cluster in families.
First-degree relatives have a 3-fold to 8-fold increased risk of developing the disease. Even though this suggests a strong genetic component, researchers have so far been unable to identify specific genes that contribute to the cause of PTC.
Krystian Jazdzewski and his colleagues have been funded by a ThyCa grant to try to find an answer.
Jazdzewski reasoned that if a traditional mutation affecting the structure or function of a gene could not be found, perhaps the problem had to do with how the genes were being regulated such as being turned off and on.
His research identified a variant in the DNA that reduces the quantity of a molecule called miR-146a, which is needed to regulate other genes. He and his colleagues show that when miR-146a levels fall, the genes TRAF6 and IRAK1, involved in tumor promotion, are not inhibited as efficiently as is normal, leading to a greater risk of cancer.
This heritable variant is the first example of a molecularly defined predisposition to PTC. The authors suggest that targeting miR-146a might be a new approach to PTC therapies.
Their findings were recently published in prestigious journal The Proceedings of National Academy of Sciences of USA: “Common SNP in pre-miR-146a decreases mature miR expression and predisposes to papillary thyroid carcinoma” by Krystian Jazdzewski, Elizabeth L. Murray, Kaarle Franssila, Barbara Jarzab, Daniel R. Schoenberg and Albert de la Chapelle
This research has the potential to help identify patients who might be at greater risk of developing PTC, and also may help identify new treatment-related targets.
ThyCa grants fill an important gap in thyroid cancer research, enabling scientists to pursue experiments that might otherwise go unfunded. Sometimes the research is a stepping stone to other studies; frequently, the results have immediate impact.
The knowledge and expertise gained contributes to a better understanding of thyroid cancer and treatment of people affected by the disease.
Hope and Help When Anaplastic Thyroid Cancer StrikesBy Brad Rubin
When Anaplastic Thyroid Cancer (ATC) strikes, a patient and their friends and families are instantly thrown into a chaotic world. In this world, we often find physicians who have never heard of ATC, let alone have the experience to treat it.
We find that although most types of thyroid cancer are generally treatable when detected early, there is very rare form called ATC with sobering survival statistics. We find few Internet references and research papers. We feel very alone in this world. We are scared.
But, thanks to the commitment of an online community of 550 people subscribed to an e-mail list who are all citizens of this new world where lives have been touched by ATC, and with the help of thyroid cancer specialist physicians, there now exists an entire web site dedicated to this rare and horrible disease.
While all members of the online community share the ATC experience, everyone’s journey is different.
Unfortunately, we find that most ATC journeys end in death (and their loved ones agonize over what could have been done differently). Occasionally, a journey does not end and life continues (and survivors wonder what they did to be so fortunate).
Some ATC patients are very young and are in otherwise robust health, while others are struggling with other health issues. Some have small children. Some have wonderful support systems, while others are traveling alone.
Some are getting treatment at facilities with world-class cancer care, while others are struggling to find expertise in a remote corner of the world.
Some are too scared, while others are not scared enough, to battle urgently and aggressively. Some question conventional medicine whose answers are not good enough, while others fear questioning physicians at all. Some seek information, some seek support, some come to grieve, and some just seek prayers.
Some ATC survivors see their mailing list participation as a way to pay the community back for their good fortune. Others see their participation as a way to exercise their power to make a positive difference in the face of the lack of power to save their loved one.
Some ask many questions, others provide many answers, and a great many just lurk and take comfort in the fact that they are not alone and that others have taken and are taking their same journey.
This ATC community began in 1997 when Cheri Lindle of Oklahoma reached out over the Internet after her stepfather Bob Collins was diagnosed with thyroid cancer. You can read their family story on the ThyCa web site.
Cheri met others over the Internet, and started an e-mail group for families coping with ATC. Since its creation on June 3, 1999, the ATC mailing list community has shared 9,100 messages, averaging about 3 messages per day. A total of 2,700 of these messages have appeared in the last year, so we are now averaging over 7 messages per day.
Although this community is made up of people of all walks of life, backgrounds, experiences, and belief systems, they have come together, enabled by Internet technology with support from Yahoo! and ThyCa, to form a vibrant, knowledgeable, supportive, responsive, and respectful community.
–From Indiana
I am a Thyca survivor now for 6 months. I am 20 years old and attend a Community College in Indiana. I would like to get some of these brochures and pass them around at my school and in my community. I believe that this is something that everyone should know about. Thank You.
–From Colorado
I am not in the medical field, however, I have my own business and would like to pass these brochures out to clients.
— From Illinois
I am a thyroid cancer survivor since 1999, I just received your packet with thyca info, I would like to help with giving out free brochures and any other materials about thyroid cancer.
— From Pennsylvania
I am a nuclear medicine and internal medicine physician with a thyroid clinic that treats and follows up patients with thyroid cancer. Would you please send me patient packets of educational materials.
–From Michigan
I am an Avon Representative and a thyroid cancer survivor – I am interested in receiving free brochures so I may include them with my Avon brochures and as well as passing them on to my friends and family.
— From Indiana
Can you send me a few brochures? I am president of a women’s sorority (30 members), and recently diagnosed with thyroid cancer. Just wanted to educate them.
–From California
I left my doctor’s office sort of reeling from the unexpected cancer news and with a handful of papers.
When I finally had a chance to look at the list of what I could and could not eat, it seemed daunting.
Your cookbook recipes are marvelous and so very appreciated. I have also found information about radioiodine treatment, which I didn’t know and I now need to call my doctor about. The websites and printed material she provided don’t even compare. Thank you so much.
Trying to figure out what is happening, how to deal with it, and what to expect is a whole lot easier with your website. You can bet I am going to print off some info and tell my doctor that the next patient she sends home with this diagnosis should also get YOUR web link.
Again, tremendous thanks.
To receive our free online newsletter, plus announcements of ThyCa events and activities, fill out ourGuestbook form.
ThyCa Is In the Combined Federal Campaign
ThyCa’s CFC # is 11675
ThyCa: Thyroid Cancer Survivor’s Association is in the world’s largest workplace giving campaign.
Federal civilian, postal, and military employees are now able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC). This federal employees’ charitable giving campaign raises millions of dollars each year for thousands of nonprofits providing health and human services throughout the world.
Low-Iodine Recipe of the MonthContributed by Liz S., Lafayette, California
Here is a perfect recipe for this time of year
No Bake Easy Holiday Rum Balls
Makes 24-30 rum balls
1 Cup almond meal (available at Trader Joe’s or health food stores)
1/3 Cup powdered sugar (can use 1/4 Cup powdered sugar and 1/8 Cup Splenda if you wish to reduce the calories)
1/4 Cup dark rum (preferably Myers)
1 teaspoon cocoa powder
1/2 teaspoon vanilla
Mix all ingredients together in a bowl until well blended. Roll in the palm of your hands into ¾ inch to1inch balls. (If the consistency of the dough feels too sticky, you can add a little more almond meal to the dough: If it feels too stiff, you can add a little vegetable oil (1 teaspoon to 1 Tablespoon) or pasteurized egg whites to moisten.)
Optional: The rum balls can be rolled in powdered sugar, cocoa powder, or almond meal for a different look and taste.
Put balls into a covered container and refrigerate for up to two weeks..
Liz says, “This is a low-iodine version of a holiday favorite that I made up when I was on the low iodine diet.”
Thank you, Liz! Your recipe will be added to the next edition of the FREE Downloadable Low-Iodine Cookbook.
Download the cookbook, with more than 250 favorite recipes from more than 100 generous volunteers.
If you’d like to contribute your favorite recipe or tip to the cookbook’s next edition, send it to recipes@thyca.org.
Have You Visited the Web Site Lately?
Our web site has more than 650 pages. More than 50 distinguished physicians plus numerous other specialists give ongoing input and review. We greatly appreciate the wonderful support of these medical specialists.
The web site expands nearly every week. Visit www.thyca.org often for the latest information updates, the schedules of local support group meetings, and news about special events.
We invite you to join ThyCa: Thyroid Cancer Survivors’ Association, Inc., to help us sustain, strengthen, and extend our services.
Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world.
You may join as a one-year member, two-year member, or lifetime member.
For our online and mailed membership forms, visit our Membership page.
We welcome new volunteers at any time. To learn about volunteer opportunities, visit our Volunteer page.
We believe that no one should have to be alone when facing thyroid cancer.
Our free support services are offered with this as our main goal.
We thank everyone for giving your time and talents to making possible our free services, publications, and events.
We’re grateful to you for reaching out to others worldwide, to help connect them with ThyCa’s many free support services and educational resources.
Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors’ Association. 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 secure donation online in support of ThyCa’s work (or you are welcome to donate by mail), so click here to give.
You’re Invited To These Thyroid Cancer Events!
- Thyroid Cancer Support Group Meetings in Your Community
- Free One-Day Regional Workshops. Watch the web site for details
Workshops already being planned for Texas/Southwest in Dallas, Texas, and the Mid-Atlantic (near Washington, DC). - The 12th International Thyroid Cancer Survivors’ Conference
October 16-18, 2009
Boston, Massachusetts
Sheraton Ferncroft Hotel in Danvers
Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Visit our website for details.
ThyCa NEWS NOTES
Copyright (c) 2008 ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Thank you to our writing, editing, and proofreading team for this issue of the newsletter: Pat Palliard, Gary Bloom, Brad Rubin, Liz S., and Cherry Wunderlich.
Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.
Please share News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at outreach@thyca.org.
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. We are dedicated to support, education, and communication for thyroid cancer survivors, their families and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.
Contact us for free awareness materials and information about our free services and special events. E-mailthyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.