ThyCa NEWS NOTES – March 2011
In This Issue:
- Free Spring Workshops To Feature Physician Speakers
- Endocrinologist To Speak at Reno, Nevada, Support Group Meeting
- “Miles for Matt” Raises Funds for ThyCa
- Why Attend a Local ThyCa Support Group?
- Where Do ThyCa Support Groups Meet?
- How Can I Start a Local ThyCa Support Group?
- Introducing the Leaders of ThyCa’s Support Group Coordination Team
- Latest News on Thyrogen Global Supply
- Potassium Iodide—ThyCa Medical Advisor Interview
- What’s New on our Website?
- New Online Forms
- New Local Support Groups Starting in Myrtle Beach, South Carolina, and Tacoma, Washington
- Extra Los Angeles Support Group Meeting on March 26
- Part of the Human Heart
- Low-Iodine Recipe of the Month
- Follow ThyCa on Facebook and Twitter
- Support the Rally for Research
- Join Us, Become a Member
- Every Day
- About ThyCa News Notes
- Saturday, April 9, 2011, 9 a.m. – 3 p.m. Philadelphia, Pennsylvania. The 3rd New Jersey / Philadelphia Thyroid Cancer Survivors’ Workshop, co-sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. and The Cancer Support Community of Philadelphia. Saturday, April 16, 2011, 8 a.m. – 5 p.m. St. Louis, Missouri. Midwest Thyroid Cancer Survivors’ Workshop in St. Louis. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
- Friday, April 29 (evening) and Saturday, April 30, 2011. Stowe, Vermont. New England Thyroid Cancer Survivors’ Workshop in conjunction with the Stowe Weekend of Hope. Sponsored by Stowe Weekend of Hope and ThyCa: Thyroid Cancer Survivors’ Association, Inc.
- Monday, May 2, 2011, 5 p.m. – 8 p.m. Chicago, Illinois. Free Dinner Symposium: Midwest Thyroid Cancer Survivors’ Workshop in Chicago. Co-sponsored by Robert H. Lurie Cancer Center of Northwestern University and ThyCa: Thyroid Cancer Survivors’ Association, Inc.
- Saturday, June 11, 2011, 8 a.m. – 5 p.m. Silver Spring, Maryland. 10th Annual Mid-Atlantic Thyroid Cancer Survivors’ Workshop. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Physician speakers will share the latest information about treatment and research. They’ll answer your questions about thyroid cancer care, both short-term and over the long term. You’ll also have the opportunity for peer discussion roundtables with other thyroid cancer survivors and caregivers.
Thyroid cancer survivors, their families, caregivers, and friends are invited to attend. These one-day educational events are sponsored or, as noted, co-sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
These events are all free. Come for all or part of the day. You may register either online on our Conferences/Workshops page (for the workshops in Philadelphia, PA, St. Louis, MO, and Silver Spring, MD), through the co-sponsors’ online forms (on the flyers posted on our website), or onsite at any of the workshops.
Visit our web site for further details about the speakers, programs, and directions to the meetings.
On Tuesday, April 12, 2011, from 12 noon until 1:30 p.m., Dr. Lisa Abbott, Endocrinologist, will speak and answer questions about thyroid cancer care at Renown Regional Medical Center (Sierra Tower, First Floor, Cafeteria Board Room), 1155 Mill Street, Reno, Nevada.
This free event is organized and hosted by the ThyCa Reno Support Group. Marta Brown and Marion Hammond are the group’s volunteer co-facilitators. For more information, visitwww.thyca.org/sg/nv_reno/.
Our special thank you to Megan Forgie for organizing the second annual “Miles for Matt” fundraiser to raise funds for ThyCa. Megan will again run in the Broad Street Run in Philadelphia, Pennsylvania, to increase awareness of thyroid cancer and raise funds for ThyCa. This year’s run will take place on Sunday, May 1, 2011.
Megan is running in honor of her husband Matt, a thyroid cancer survivor. Megan invites everyone to stop by in support of her effort, and become part of the team! If you can’t make it to Philadelphia, but would like to support Megan’s fundraising effort, go to: www.active.com/donate/milesformatt.
Thank you, Megan!
At a support group meeting you will find people with challenges similar to yours. You will meet and talk face to face with others in your community.
Participants in a support group share personal experiences with thyroid cancer, offer practical tips to help you cope with your situation, and provide emotional comfort and moral support.
Benefits of participating in support groups may include:
- Feeling less lonely, isolated, or judged
- Gaining a sense of empowerment and control
- Improved coping skills and adjustment
- An opportunity to talk openly and honestly about your feelings
- Reduction in distress, depression, or anxiety
- Clearer understanding of what to expect with your situation
- Learning about new medical research
- Getting practical information about treatment options
- Comparing notes about resources, such as doctors and options
(From information from Mayo Clinic, Rochester, MN, and Shady Grove Adventist Hospital, Rockville, MD)
ThyCa has helped start face-to-face support groups across the United States and in Canada, Costa Rica, and Philippines.
Find out whether there is a ThyCa Support Group near you.
Don’t see a support group near you? Find out how you can help start a new group. Just firstname.lastname@example.org. We’ll help you so you don’t have to reinvent the wheel!
We are pleased to introduce two longtime ThyCa volunteers who are now the coordinators of ThyCa Local Support Groups.
If you’re interested in starting a new ThyCa support group, Kathryn Wall will help you, in her role as Coordinator of ThyCa’s Support Group Development. Kathryn is Facilitator of the ThyCa Raleigh, North Carolina Support Group, and has been a ThyCa volunteer for over 10 years.
Karen Ferguson of South Carolina is Coordinator of ThyCa’s Existing Support Groups. Karen is ThyCa’s first volunteer. Early in 1995, she began bringing thyroid cancer survivors together over the Internet. She is one of ThyCa’s Co-Founders, originator of the first online support group, and currently the coordinator of ThyCa’s Toll-Free Number Team. Karen has worked with numerous support group facilitators during her more than 15 years of ThyCa volunteering.
We’d like to take this opportunity to again thank ThyCa’s Support Group Team Coordinators during the past 12 years:
- Ric Blake of New Hampshire started the first-ever face-to-face thyroid cancer support group, in 1996, is one of ThyCa’s Co-Founders, developed the ThyCa Support Group Program as well as the original Support Group Facilitator Manual, and is currently Co-Facilitator of the ThyCa Boston Support Group.
- Sara Brenner of Virginia started the ThyCa Northern Virginia Support Group and currently Co-Facilitates it.
- Leah Guljord of Florida started the ThyCa Space Coast Florida Support Group, which still provides telephone and e-mail support, as well as serving as ThyCa Membership Coordinator, ThyCa Spirit Items Coordinator, and editor of the free Low-Iodine Cookbook.
- Sandy Triplett of Missouri started the ThyCa Central Missouri Support Group and currently Co-Facilitates it.
- Theresa Wickerham of Missouri started the ThyCa St. Louis Support Group and currently Co-Facilitates it.
If you’d like to find out more about starting a local group, e-mail to email@example.com. You will find the Support Group Facilitator Application form, as well as the web pages of all the current groups, at http://www.thyca.org/sg/.
March 16, 2011 — Genzyme Corporation is reporting that the global supply of Thyrogen will fluctuate through July 2011, causing temporary shortages in certain countries.
Genzyme anticipates a shortage in the United States beginning in mid-April and extending through mid-June and is notifying health care providers of the supply interruption so that they may schedule individual patient treatments appropriately during this time.
Communications about supplies in other countries are being managed by Genzyme affiliates at the regional level.
Regional disparities in supply are expected to continue to occur due to the logistical complexities of managing global demand with limited inventory.
Genzyme continues to work toward obtaining regulatory approvals worldwide for the fill/finish transfer to a third party contract manufacturing facility. All Thyrogen released from both Genzyme’s Allston, Massachusetts, plant and from the third party contract manufacturing facility has met all applicable quality standards and is safe for use in patients for whom it is indicated.
Genzyme also announced that it remains focused on restoring normal supply of Thyrogen globally as soon as possible.
The recent news from Japan has mentioned potassium iodide and the thyroid gland.
ThyCa Medical Advisor Kenneth D. Burman, M.D., gave helpful information on this topic several years ago.
Dr. Burman is Director of Endocrinology at the Washington Hospital Center in DC, a past president of the American Thyroid Association, a ThyCa Medical Advisor, and a contributing author of the patients’ reference book Thyroid Cancer: A Guide for Patients, now in its expanded second edition (2010).
Among the additions to www.thyca.org are a link to the recent study on treating Anaplastic Thyroid Cancer, additional details about all the Research Grants awarded by ThyCa since 2003, more coming events on the Calendar page, and more.
Our web site has more than 650 pages of content. More than 50 distinguished physicians plus numerous other specialists provide ongoing input and review of the medical information. We greatly appreciate the wonderful support of these medical specialists.
We update and expand the web site every week. Thank you to our Web team, consisting of our webmasters: Betty Solbjor and Joel Amromin; our Publications Committee members; and our Medical Reviewers.
Visit www.thyca.org often for the latest information updates, the schedules of local support group meetings, and news about special events, or to get involved.
Let us know if you have suggestions for additional web site content, as well as additional questions to be answered by physicians. E-mail your ideas to firstname.lastname@example.org. This is our web site, and it benefits from everyone’s contribution. It’s also a great way to start being involved!
We’ve posted new online signup forms for our Free Guestbook and our Free Workshop Registration. If you’re already on our e-mail list, you’ve received 2 individual e-mails with information on how to access these new forms, if you choose to use one or both of them. If you’re new to ThyCa, you’ll find instructions on the forms themselves. These technology enhancements are designed to streamline ThyCa recordkeeping. As always, no identifying information will be shared, sold, or loaned to any individual or organization outside of ThyCa. If you have questions or comments about the new forms, please forward them to email@example.com.
Thank you for helping with this transition.
Thank you to the volunteers who stepped forward to form these new support groups:
- ThyCa Myrtle Beach, South Carolina Support Group
Wendy Garland, Facilitator
- ThyCa Tacoma, Washington Support Group
Nancy Joyner, Facilitator
For locations, contact details, and web pages for all the local ThyCa Support Groups, visit www.thyca.org/sg/.
The ThyCa Los Angeles Support Group is holding two meetings in March. The extra meeting will take place on March 26. For details, visit www.thyca.org/sg/ca_losangeles/.
(Excerpted with permission from pages 243-244 of Lorna’s book telling her personal story, “Dirty Bomb Shell: From Thyroid Cancer Back to Fabulous,” Authorhouse, 2010. Lorna is an actor, singer, writer, director, and teacher and has attended meetings of both the ThyCa Boston, Massachusetts, Support Group and the ThyCa Brockton, Massachusetts, Support Group.)
That Saturday, I attended my first (ThyCa) meeting in Boston. Since my diagnosis, I had become very familiar with their web site www.thyca.org. It wasn’t until I noticed a posting about the Chernobyl Anniversary Convocation in Boston that I actually wrote to one of the local members. Thrilled to have an educated person to chat with about thyroid cancer, I sent her daily emails about my life pre and post-cancer. She was a great resource. I could hardly wait to meet her in person.
As I walked through the court yard of the huge hospital in Boston I saw the face of the woman whose emails I had been drinking in for weeks. “You must be Lorna!” she said. “Come on in, Love. We are just about to get started.” Her Aussie/English accent (as she calls it) was both charming and entertaining.
The meeting opened with each person sharing their name, their type of thyroid cancer and how many years they were out. I’ll never forget how initially exhilarating it was to sit with a group of people who truly understand my new normal. Suddenly, typical salutations turned into group members using numbers and formulas to explain their health status.….My head was spinning. Just then it was my turn to speak.
“Hello, my name is Lorna Brunelle. I’m 35 years old. I am a year and a few months out. I had radioactive iodine radiation therapy on March 17th, 2005. I am ashamed to say I do not know my exact dosage. It was under 100. Maybe around 50? Was it 53? I completed Thyrogen injections this week. Forgive me. I am still a little foggy. Unfortunately, I cannot tell you any of my numbers….”
After a small speck of silence, a man in the group said, “Lorna, we will help you…. You need to watch your numbers and chart how you are feeling. You need to bring that information to your doctor…”
1 1/2 pounds skinless, boneless chicken breasts, cut into 1/2 inch strips
noniodized salt & pepper
2 Tablespoons olive or vegetable oil
2 large onions, chopped
2 sweet peppers, any colors, cut into 1/4 inch strips
2 minced or chopped garlic cloves
3 cups homemade chicken broth
3/4 cup peanut butter
1 (10 ounces) package petite frozen peas, thawed
1/4 cup bread crumbs (low-iodine)
Optional: Cayenne or jalapeno pepper, finely minced
Season chicken with salt and pepper. In a large frying pan, heat oil over medium heat. Add chicken strips and saute, stirring for about three minutes, until chicken turns opaque. Remove chicken and set aside.
Add onions, bell peppers, and garlic to pan. Saute about three minutes until onions are tender. For added heat, stir in hot pepper. Add broth and peanut butter. Simmer, stirring occasionally for about ten minutes.
Stir in chicken, peas, and bread crumbs. Cook gently 5 to 10 minutes more, stirring occasionally, until sauce is thickened and heated through. Serve over basmati rice.
Barbara writes, “Your cookbook is wonderful! I know there are already so many chicken recipes but this might be a little different. It’s delicious and freezes well.”
Thank you, Barbara, for contributing your recipe. We will include it in the next edition of the ThyCa 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.
If you’d like to contribute your favorite recipe or tip, send it to firstname.lastname@example.org.
On Twitter, at ThyCaInc.
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 will again award new research grants in 2011.
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.
Help us sustain, strengthen, and extend our services. We invite you to join 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 people worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225).
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.
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.
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: Lorna Brunelle, Leah Guljord, Pat Paillard, Barbara P., Barbara Status, Cherry Wunderlich, and Gary Bloom.
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 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.