ThyCa NEWS NOTES – June 2008
In This Issue
- Conference Preview: Speaker Introductions
- Clinical Trials News: Phase III Trial of XL184-301
- Newest Support Group Begins in Northern New Jersey
- Want To Start a Support Group in Your Community?
- Research Advocacy: ThyCa and the 2008 AACR Scientist-Survivor Program
- Online Communities Grow
- One-To-One Support Available Year-Round
- Golfers and Friends Remember Megan and Raise Funds for Research
- What’s New on the Web Site?
- Creative Awareness in North Carolina
- A Story from Kayce
- Low-Iodine Tips and Recipes of the Month
- Coming Events
- Every Day
- Get Involved
We’re honored to introduce 27 distinguished medical professionals already confirmed for the 11th Annual International Thyroid Cancer Survivors’ Conference, which will take place in St. Louis, Missouri on October 17-19, 2008.
- James H. Boyd, M.D., St. Johns Mercy Medical Center, MO
- Douglas B. Evans, M.D., University of Texas, M.D. Anderson Cancer Center, TX
- Paul R. Krakovitz, M.D., The Cleveland Clinic Foundation, OH
- Mira Milas, M.D., The Cleveland Clinic Foundation, OH
- Jeffrey F. Moley, M.D., Washington University School of Medicine, MO
- David Myssiorek, M.D., F.A.C.S., New York University Clinical Cancer Center, NY
- Joseph Scharpf, M.D., The Cleveland Clinic Foundation, OH
- Julie Ann Sosa, M.D., M.A., Yale University School of Medicine, CT
- Rebecca Brown, M.D., University of Chicago Medical Center, IL
- Mimi Hu, M.D., University of Texas, M.D. Anderson Cancer Center, TX
- Uzma Khan, M.D., University of Missouri, MO
- Paul W. Ladenson, M.D., Johns Hopkins Medical Institutions, MD
- Bryan McIver, M.B.Ch.B., Ph.D., Mayo Clinic, Rochester, MN
- Matthew D. Ringel, M.D., Ohio State University College of Medicine, OH
- \Steven I. Sherman, M.D., University of Texas, M.D. Anderson Cancer Center, TX
- Jennifer A. Sipos, M.D., University of Florida Shands Cancer Center, FL
- Beatriz Tendler, M.D., University of Connecticut Health Center, CT
- R. Michael Tuttle, M.D., Memorial Sloan-Kettering Cancer Center, NY
- Irini E. Veronikis, M.D., St. Johns Mercy Medical Center, MO
- Steven G. Waguespack, M.D., University of Texas, M.D. Anderson Cancer Center, TX
Nuclear Medicine, PET/CT, and Radiology:
- A. Cahid Civelek, M.D., University of Louisville, KY
- Perry W. Grigsby, M.D., Washington University School of Medicine, MO
- Edward B. Silberstein, M.D., University of Cincinnati, OH
- Marcia S. Brose, M.D., Ph.D., University of Pennsylvania, PA
- Scot C. Remick, M.D., Mary Babb Randolph Cancer Center, WV
- Christopher M. Wolken, D.D.S., St. Louis, MO
- Pamela Schultz, R.N., Ph.D., New Mexico State University, NM
More to be confirmed.
Other Specialists and Survivor/Caregiver Roundtable Discussions
- Get-Acquainted Roundtables
- Coping Skills: Dealing with Fears about Testing, Treatment
- Health Insurance Coverage, Appeals, Portability
- Being in a Clinical Trial: Things To Consider, Questions To Ask
- Coping with Voice Issues
- Neck Dissection Recovery
- Living with Thyroid Cancer Over the Long Term
- ….and many more
For conference questions or to volunteer before or during the conference, e-mail to firstname.lastname@example.org
We look forward to seeing you in St. Louis!
On June 16, 2008 June, Biopharmaceutical company Exelixis Inc. said Monday it reached an agreement with the Food and Drug Administration on the design of a Phase III clinical trial for a drug to treat medullary thyroid cancer.
Results of previous clinical trials were presented at the 2008 American Society of Clinical Oncology meeting. Exelixis said it plans to initiate the late-stage trial of XL184 this summer. The first of the trial’s several planned sites is now recruiting patients.
ThyCa’s web site has a clinical trials section. In it you’ll find links to all clinical trials for all types of thyroid cancer, plus background information about clinical trials and what you should know.
Welcome to ThyCa Northern New Jersey, which will be meeting in Denville, New Jersey on the third Tuesday evening of every month starting on July 15, 2008.
The facilitators are Candy Larkins, R.N. and Diane Wood, L.C.S.W. You’ll find meeting details and contact information on the group’s web page.
There are now ThyCa Support Groups in more than 70 communities around the United States and in Costa Rica and Philippines. These groups are wonderful places to get to know other survivors and caregivers in your community, face to face.
ThyCa will help you, with training and materials and ongoing support. To find out more about starting a group, contact Sara Brenner, Director of ThyCa Local Support Group Development, at
Research Advocacy: ThyCa and the 2008 AACR Scientist—Survivor Program
Round 2: Progress, Youth, and Hope
By Joel Amromin, ThyCa Los Angeles Support Group Co-Facilitator and Board Member for ThyCa: Thyroid Cancer Survivors’ Association
This year was my second year representing ThyCa as a participant in the American Association for Cancer Research Scientist-Survivor Program (SSP). The SSP was held in connection with the 2008 AACR Annual Meeting.
This time, because I was at last year’s meeting, I could sense the pace of progress in cancer research that was not obvious last year. Much of this progress has resulted from the mapping of the human genome and the associated understanding of chain reactions in normal and cancerous cells.
I also took a closer look at the demographics of research presenters. I came away with hope.
Last year, Dr. Jean-Pierre Issa from the M.D. Anderson Cancer Center talked to us about epigenetics, which, in simplified terms, is the study of those parts of the DNA and associated cell mechanisms that are not genes. These play critical roles in the cell’s ability to translate the genes into instructions for building the right proteins at the right time.
Dr. Issa said that therapies based on epigenetics were still primarily applicable only to liquid tumors, but that Steven Sherman, M.D., also of M.D. Anderson, was starting to look into epigenetics in solid tumors. (Editor’s note: Dr. Sherman is a thyroid cancer specialist and is a ThyCa medical advisor.)
This year, Dr. Sherman spoke about New Directions and Targeted Therapies in a session on thyroid cancer. He described using Decitabine in Phase 1I clinical trials to see if it can restore radioactive iodine uptake in patients with metastatic papillary or follicular thyroid cancer that is unresponsive to radioactive iodine I 131.
Regardless of the trial outcomes, seeing this presentation highlighted the exciting progress being made as cutting-edge epigenetic research moves into the clinical arena, even if only in early trials.
Around the clock, seven days a week, the nearly 9,000 thyroid cancer survivors and caregivers in our e-mail support groups share their experiences and give and receive encouragement and support. More people join every day.
The 10 ThyCa E-Mail Groups offer discussions on coping with each type of thyroid cancer, as well as varied situations with thyroid cancer.
The e-mail groups are Thyca (papillary and follicular), Medullary Thyroid Cancer, Anaplastic Thyroid Cancer, Pediatric Thyroid Cancer, Long-Term Survivors, Advanced Thyroid Cancer (metastatic papillary and follicular), Childbearing and Thyroid Cancer, Mental Challenges, Love-Loss-Legacy, and the Caregivers Support Group.
Our Person To Person Network serves thyroid cancer survivors around the world, giving one-to-one support from ThyCa volunteers matched by type of thyroid cancer.
On May 18, 2008, “Big” John Oaks, proprietor of the Hanging Tree Saloon in Bracken, Texas, generously organized and hosted a golf tournament in memorial tribute to longtime ThyCa Volunteer Megan Stendebach.
John wrote, “The 7th annual Hanging Tree Saloon Golf Tournament for Thyroid Cancer Research, which has been renamed the 7th Annual Megan Stendebach Memorial Golf Tournament for Thyroid Cancer Research raised more than $13,000 this past May 18th!”
“It was a beautiful, sunny day for golf, as 109 golfers, and many more additional supporters got together to fondly remember Megan, share in great barbecue and refreshments, and raise much needed funds for Thyroid Cancer Research!”
Big John generously donated the food and refreshments, ensuring that all net proceeds go to our cause. He plans to continue this tribute event, and we will continue to announce it and honor Megan on our web site.
Megan was one of the first contributors to ThyCa’s web site, sharing many of her creative poems and songs in our web site’s Humor section. She also helped with ThyCa’s outreach programs and our conferences, and organized several fundraising golf tournaments as part of her many wonderful contributions to ThyCa.
Our award-winning web site received more than 320,000 hits in May.
Every week, and sometimes more often, our web site adds pages and free resources for survivors, caregivers, professionals, and the public. Some of the recent additions:
- Lotsa Helping Hands, a free online care coordination service
- Conference Updates: speakers, hotel reservation, and transportation details
- The latest edition of ThyCa News Notes
- Research Advocacy: ThyCa and the 2008 AACR Scientist-Survivor Program (complete article)
- Low-Iodine Recipes in French
- More materials in Spanish
- Information about RAI and the chance of secondary cancers
- More Conference news
Thank you to Webmistress Betty Solbjor of Massachusetts, Webmaster Joel Amromin of California, the members of ThyCa’s Publications Committee, and the more than 50 thyroid cancer experts who give review and input to the web site.
In early June, Jennifer Bureau organized a highly successful Thyroid Cancer Awareness Display at the Wachovia Health Fair in Charlotte, North Carolina. Jennifer had signs and lots of ThyCa provided materials for the Wachovia employees, raising awareness for early detection and prompt treatment.
Taking part at the health fair was Karen Ferguson, ThyCa Co-Founder and coordinator of our Toll-Free Number volunteers. Karen writes,
“The health fair was grand. Wachovia was as huge as Jennifer promised. It is an indoor city. It has everything on site except living quarters. The facility even has several doctors offices, including specialists. I have no idea how many folks visited our booth. Jennifer deserves thanks and recognition for putting it together. She plans to do it next year too.”
Thank you, Jennifer and Karen!
(Editor’s Note: Hearing that word “Cancer” and knowing it is you that is being associated with it can be scary. You don’t even think about your thyroid that much and then someone tells you that you have thyroid cancer and you didn’t even know your thyroid could get cancer and that can be very disturbing. Some of “US” can still keep our sense of humor through it all and ThyCa has received humorous creative works from patients and caregivers alike and enjoys sharing them with you.)
Here is one such story thanks to Kayce:
I found out that I had thyroid cancer when pregnant with my second child and went in for my first baby’s appointment. The doctor felt my throat and said, “What’s this on your thyroid?” I thought to myself (“to myself” of course, since this is probably the stupidest thing you will ever hear, I didn’t DARE say it out loud!)…Thy-roid…there’s nothing’ wrong with my Thighs!”
Like I said, I didn’t dare say this out loud as I knew that it was extremely silly! So to break the ice with people, this is what I told them so they didn’t feel awkward and feel like they had to apologize for me having cancer…it’s a tough thing to tell people and a scary word for most.
So, I just decided if it’s extremely uncomfortable for people to talk about I just whip that story out and get a good laugh!
People need to know you can have humor about serious things such as this so they know you will be okay mentally, emotionally and most importantly physically. This will help your loved ones help you out in the times when you don’t feel much humor.
(Editor’s note: By the way, we’re always interested in different ways that people cope, and we invite you to share your poem, story, etc. by e-mailing to email@example.com or mailing them to ThyCa, Attn: Coping with Thyroid Cancer, P.O. Box 1102, Olney, MD 20830-1102. Help give other ThyCans a little humor, and thanks! )
For children and teens coping with thyroid cancer, Melissa L. of Pennsylvania generously contributed tips on menus and snacks, as well as recipes, to the Pediatric Thyroid Cancer Web Site.
Here are her suggestions for meals that kids enjoy:
- Fresh Fruit
- Fruit Juice
- Peanut Butter & Jelly Sandwich
- Tortilla Chips
- Fruit Leather
- Juicy Juice
- Goulash and Green Beans
- Hamburger and French Fried Potatoes
- Chicken Breast and Mashed Potatoes
- Beef Roast, Carrots, Green Beans, and Mashed Potatoes
- Steak and Baked Potato
- Spaghetti, Tomato/Meat Sauce, and Green Beans
Kids’ Snack Ideas
- Sorbets instead of ice cream
- Italian Ice
- Popcorn popped in canola oil and salted to taste
- Fresh fruit
- Fresh vegetables
- Unsalted peanuts (add noniodized salt or non-sea salt to taste)
- Tortilla chips
- Fruit leather
- Fruit snacks
- Matzo crackers with peanut butter
Thank you, Melissa! Your tips and recipes 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 firstname.lastname@example.org.
- Each Month: Meetings of Local Thyroid Cancer Support Groups.
More than 70 groups. Meetings are held in states coast to coast, as well as Costa Rica and Philippines. Each group has its own web page. These meetings are wonderful ways to talk with other survivors and caregivers face to face. For meeting locations, times, and contacts, visit our web site’sLocal Support Groups page.
- September 2008: Thyroid Cancer Awareness Month.
Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Find out how you can help raise awareness for early detection, and connect others with ThyCa’s free support services, resources, and special events.
- Friday, Saturday, Sunday, October 17, 18, and 19, 2008: St. Louis, Missouri.
The 11th International Thyroid Cancer Survivors’ Conference. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Conference location: Sheraton Westport Hotel, 191 Westport Plaza, St. Louis, MO 63146. Learn from experts and share experiences with others coping with thyroid cancer. More than 80 session choices: The latest research, advances in treatment and follow-up, insurance and employment issues, and coping skills for well-being. More than 50 speakers will include leading physicians and other specialists. The hotel has arranged special room rates for conference attendees for single, double, triple, or quad rooms.
- Saturday, October 18, 2008 from 6 p.m. to 9 p.m.: St. Louis, Missouri.
ThyCa’s 7th Annual Dinner/Auction to Support Research. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc. To be held in conjunction with the 11th International Thyroid Cancer Survivors’ Conference. At the Sheraton Westport Hotel, 191 Westport Plaza, St. Louis, MO 63146.
What ThyCa Can Do For You:
- Give free information and numerous downloadable publications on thyroid cancer
- Offer support via the Internet, local support group meetings, and person-to-person contacts
- Supply materials on thyroid cancer that you can’t find elsewhere
- Offer you an annual conference and regional workshops where you can meet other survivors, get answers to your questions about thyroid cancer, treatments, medications, and more, from doctors who are approachable and experts in thyroid cancer
- Make available to you, via the internet, printable flyers, articles, and newsletters that give the latest information on thyroid cancer
- Have people available who have been through this disease and are very willing to share their experiences and help you out
- Tell others about www.thyca.org and our toll-free survivors’ line 1-877-588-7904
- Raise Awareness of Thyroid Cancer—Get Free Materials
- Volunteer: We’ll help you find an activity to match your time and talents.
- Become a ThyCa Member: Our thanks to all our one-year members, two-year members, and lifetime members.
- Donate: Donate by mail or online, or give a tribute gift in honor of someone special.
Special Thanks to the hundreds of wonderful volunteers who help ThyCa throughout the year. You are bringing help and hope to people worldwide by raising awareness, and sustaining and extending our outreach, support services, and special events, as well as fundraising to strengthen our services and support for thyroid cancer research for cures for all thyroid cancer.
ThyCa NEWS NOTES
Copyright (c) 2008 ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Thank you to Pat Palliard, Editor, as well as Joel Amromin, Gary Bloom, Kayce K., Melissa L., and Cherry Wunderlich, for writing, editing, and proofreading this newsletter.
The deadline for articles and news items is the first day of each month. Suggestions for articles are welcome.
We invite you to send News Notes to your family and friends. For permission to reprint in another electronic or print publication, please contact us at email@example.com.
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. Efirstname.lastname@example.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit www.thyca.org.