ThyCa NEWS NOTES – October 2009
In This Issue
- Take Part in Three Different Surveys for Thyroid Cancer Patients
- New FNA Guide for Physicians Available from ThyCa
- Clinical Trials News
- ThyCa Orange County, CA, Support Group To Host Speakers from Cancer Legal Resource Center
- Annual Conference Draws Large Attendance
- Dinner/Auction Raises More Than $35,000 for Thyroid Cancer Research
- What’s New on the Web Site?
- Newest Local Support Groups Form in Connecticut and New York
- Our Free Guestbook
- My Experience at ThyCa’s 2009 Conference
- Low-Iodine Recipe of the Month
- You’re Invited To Become a MemberW
- Upcoming Events
- Thank You From ThyCa
- Every Day…
- Ask ThyCa
- Tell ThyCa
- About ThyCa NEWS NOTES
Thyroid cancer patients with all types of thyroid cancer are invited and encouraged to take part in three different surveys on thyroid cancer management and patients’ experiences.
Each survey takes just a few minutes to complete.
The surveys were developed by teams led by four of ThyCa’s Medical Advisors:
- Stephanie L. Lee, M.D., Ph.D., Endocrinologist of Boston Medical Center;
- David Myssiorek, M.D., Otolaryngologist, of New York University Cancer Institute; and
- Douglas Van Nostrand, M.D., Nuclear Medicine Physician of Washington Hospital Center, and Matthew D. Ringel, M.D., Endocrinologist, of The Ohio State University College of Medicine.
This is a chance for all thyroid cancer survivors to impact our care going forward. We all have a vested interest in our ongoing care since a thyroid cancer diagnosis brings with it a lifetime of follow-up management and potentially repeat treatment.
Take each survey, and hopefully, contribute to the continuing progress in our treatment. The physicians involved in these surveys hope to publish their findings. It is up to us to provide enough of a response. We encourage everyone to participate.
- Voice Following Thyroid Cancer Surgery. This survey is for everyone who has had thyroid cancer surgery. The goal is to receive information from patients whose voices stayed the same, as well as those who experienced a voice disorder following their thyroid cancer surgery. Please complete this survey, whether your voice stayed the same or whether it changed after thyroid cancer surgery. The survey team is led by David Myssiorek, M.D., Otolaryngologist
- Radioactive Iodine Treatment. Please complete the following survey regarding Radioiodine (I-131) Treatments. The survey team is led by Douglas Van Nostrand, M.D. and Matthew D. Ringel, M.D. Your responses will be very important to help determine data such as the frequency of radioiodine outpatient and inpatient treatments, the adequacy of the radiation safety instructions that you received, and areas involving I-131 treatments that may be improved.
- Complementary and Alternative Medicine Use. Please complete the following survey regarding Complementary and Alternative Medicine Use. The survey team is led by Stephanie L. Lee, M.D., Ph.D., Endocrinologist.
Please complete the surveys as soon as possible. Thank you for your participation.
The new Fine Needle Aspiration Procedure Guide for Physicians, by Cytopathologist Yolanda Oertel, M.D., is now available free of charge. Physicians who would like a free copy should send their complete mailing address to ThyCa via e-mail to firstname.lastname@example.org, fax to 1-630-604-6078, or mail to ThyCa, PO. Box 1102, Olney, MD 20830-1102. Please indicate in your request which publication you are requesting.
This 19-page manual for physicians has 15 sections that detail the equipment and materials needed, physician-patient communications, and step-by-step instructions for performing a FNA.
Dr. Oertel is Director of the Fine Needle Aspiration Service at the Washington Hospital Center in Washington, DC. She has been performing FNAs for more than 30 years. She has trained numerous other cytopathologists. She is a medical advisor of ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa’s Publications Committee assisted in the production of the new FNA manual.
New Clinical Trial for Patients Who Have Failed Radioiodine and Are Candidates for Chemotherapy
A new clinical trial has just opened at Dana Farber Cancer Institute of Harvard University in Boston, Massachusetts. The trial is for patients who have failed radioiodine and are candidates for chemotherapy. It uses a targeted agent called everolimus (or RAD001), which blocks a signal molecule called mTOR.
This agent has activity in renal cell cancer and in neuroendocrine cancers of the gastrointestinal tract and in that sense resembles sorafenib, although molecularly it is completely different. It is also well tolerated and is taken by mouth. The trial is supported by Novartis. The principal investigator is Jochen Lorch, M.D. The trial will also open at Massachusetts General Hospital in Boston, Massachusetts, and at M. D. Anderson Cancer Center in Houston, Texas.
Clinical Trial Expands to More Locations
The clinical trial of XL184 for adults with medullary thyroid cancer has expanded to additional locations. The trial is now recruiting patients at centers in 19 states, the District of Columbia, and 12 other countries. The trial is supported by Exelixis. Details are available on this web page, on the National Cancer Institute site:
Lists of All Clinical Trials
Go to the ThyCa web site’s Clinical Trials section for the following:
- general information about clinical trials,
- suggestions from ThyCa volunteers about finding and participating in clinical trials, and
- the complete clinical trial database maintained by the National Center Institute. The clinical trials database now gives information about more than 50 current clinical trials for thyroid cancer testing and treatment.
As a reminder, ThyCa is an organization led by thyroid cancer survivors, and their loved ones. As such, ThyCa does not endorse one clinical trial over another. Instead, we see it as part of our mission to make all of us aware of the treatment/management opportunities for all types of thyroid cancer. Clinical trials can help people who don’t have other treatment options. Clinical trials can also benefit us by creating better treatment and testing plans. It benefits all of us when we become better informed.
The ThyCa Orange County, California, Support Group Facilitators are excited to announce that they have arranged to have guest speakers for the meeting on Saturday, November 21, 2009, from 10:30 a.m. to noon. The guest speakers will be from the Cancer Legal Resource Center. All support group participants and their guests are invited to this special event.
Attendees will learn about cancer-related legal issues, including employment issues, obtaining and keeping health insurance, access to quality care, navigating managed care, estate planning, disability and life insurance options, and government benefits.
The meeting takes place at Hoag Memorial Hospital, Patty & George Hoag Cancer Center, Building 41, 2nd Level, Conference Room A, 4000 W. Pacific Coast Highway Newport Beach, CA 92663
If you plan to attend, please e-mail the Support Group Facilitators Shilo Bartlett, Anne MacPherson, and Bart Bartlett atOrangeCounty_CA@thyca.org. Advance registration will help ensure the meeting takes place in the right meeting room.
The 12th International Thyroid Cancer Survivors’ Conference brought together more than 450 thyroid cancer survivors, caregivers, and health care professionals on October 16-18, 2009 in Danvers, Massachusetts, near Boston.
People with every type and variant of thyroid cancer, from children through seniors, came from 36 states, District of Columbia, Puerto Rico, Brazil, 5 provinces of Canada, and United Kingdom. Over the three days of this unique annual event, they shared their experiences, and learned from experts as well as each other.
The speakers and program received enthusiastic praise from the attendees. The weekend featured more than 100 session choices. ThyCa’s web site will have a detailed report later this year.
Thank you very much to everyone who contributed your time and talents to the success of the conference.
We’re pleased to share a few of the many notes and comments received since the conference.
- “I just wanted to thank you for an enlightening and informative Thyroid Cancer Survivors’ Conference! I realize that a great deal of time and work went into making this such a successful event!”
- “It was truly an empowering experience to meet all other people who are touched by thyroid cancer one way or another – as a patient, a medical professional, or a caregiver. Also, it was just amazing to see how a disease like cancer could bring out so much positive energy from people.”
- “I attended the 12th Thyroid cancer conference this past weekend and thought it was great! Everyone worked so hard to make this happen and many thanks to all that helped to get this together. Was also so happy it was back here in my area as it originated from here 11yrs ago. It was really nice to meet up with all my old friends and meet so many new people. And thanks to all the doctors and speakers who gave up their time for us. As a 16 year survivor with stage 4 with widely metatastic disease I was relieved to see that there are so many new clinical trials available for those of us with this status. I just wanted to say thanks to all who participated and that my husband and I had a great weekend.”
- “That was a fanstastic conference. So much info.”
The 8th Annual Dinner/Auction Fundraiser was a big success, raising more than $35,000 for thyroid cancer research. Many thanks to our wonderful supporters through your donations of auction items, your bids on these items, and your help with planning and running this wonderful event. Special thanks to Ken Pelt of Wisconsin, thyroid cancer survivor, for your inspiring talk and appeal for more thyroid cancer research.
This wonderful support helps ThyCa continue to fund thyroid cancer research—now 7 straight years, 12 different grants (some 1 year, and some 2-year grants), and totaling more than $550,000.
Some of the newest additions include downloadable PDF booklets from Genzyme on thyroid cancer and on Thyrogen, as well as information on further sources of financial support and in-kind assistance for cancer patients. These additions are in the Links section.
Our web site has more than 650 pages of content, including sections on the management of all types of thyroid cancer, information about clinical trials of new treatments, connections to one-to-one and group support, and much more. The web site also has numerous free downloadable publications in English, French, and Spanish.
More than 50 distinguished physicians plus numerous other specialists provide ongoing input and review. 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, Betty Solbjor and Joel Amromin; our Publications Committee members who develop the content; 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.
And let us know if you have ideas for additional web site content, as well as additional questions to be answered by physicians. E-mail your ideas to email@example.com. This is our web site, and it benefits from everyone’s contributions. It’s also a great way to start being involved!
Welcome to our newest local support groups, in Waterbury, Connecticut, and Rochester, New York. Thank you to the volunteer facilitators, Dot Torretta and Adrienne Young Cohen.
Every month, more than 60 thyroid cancer support groups hold meetings. Go to our Support Groups page for a complete list of groups, contact information, and meeting schedules. This page also has information about starting a group in your area. If you don’t have internet access, call (toll-free): 1-877-588-7904.
It’s quick and easy to sign up to receive our free online newsletter, as well as announcements of ThyCa events, news about recent developments in thyroid cancer management, and more. It’s a great way to stay connected to the thyroid cancer community, and to stay up to date on changes in treatments and testing methods, especially if you’re a long-term survivor.
If you move, or change your e-mail address or phone number, you can also use the Guestbook to let us know. Just check the “update” box on the form, and we’ll be able to maintain our connection. Stay connected. Help strengthen the voice of thyroid cancer survivors … it will help us be heard. Just fill out ourGuestbook form.
To protect each person’s privacy, the mailing list is for the sole use of ThyCa: Thyroid Cancer Survivors’ Association, Inc., and its affiliates. ThyCa does not ever sell, share, or give away any contact information.
I entered the Sheraton Ferncroft Hotel the way I always arrive for the conferences: eager to learn, anxious to make new friends, and ready to help others who have been touched by thyroid cancer.
ThyCa, once again, did not let me down. The speakers gave us a wealth of information and took the time to answer our questions in a way we could understand. The attendees were friendly and gave each other support, even if just helping someone find the next session.
Registration was easy for me, the handouts were great, and the Conference Committee should be very proud of the way things turned out.
Everyone I spoke with was in awe of the amount of information they received. There is always a feeling of camaraderie among those who attend these conferences. You can feel the concern, love, and support that is generated by such a large group of people, which in this day is unusual. But then again, we are bound by a common thread —thyroid cancer — and it sort of makes us part of a family and we want to take care of each other.
Another wonderful conference — Thank you, ThyCa!
Don’t miss Dallas in 2010!
George’s Turkey Bolognese
1 to 1 1/2 lbs Lean Ground Turkey
1 Tablespoon onion powder
2 Tablespoons dried oregano
1/4 teaspoon thyme
2 teaspoons dried basil
1 Tablespoon dried parsley
1 teaspoon garlic powder
1/4 teaspoon fresh cracked pepper
Mix all dry ingredients together first.
Add all the ingredients to the turkey meat, mixing thoroughly.
Add olive oil to frying pan, and sauté meat until thoroughly cooked.
1 large can of crushed tomatoes
1 can of salt free tomato paste
2 cloves Garlic, chopped
1 small Onion, diced
Sauté garlic and onions in the olive oil, until translucent. Add Crushed tomatoes and tomato paste. Cook on low flame for approx 10 minutes.
After meat is cooked, add it to the sauce.
Serve over rotelle or penne pasta.
Also, a Tip from June C. _ To add a little more flavor to the Apple Muffins (page 75 of the ThyCa Free Low-Iodine Cookbook, I add 2 Tablespoons of honey and 1/2 cup of raisins .
Thank you, June! We’ll include this recipe and your tip in the next edition of the FREE Downloadable Low-Iodine Cookbook.
Download the 6th edition of the Low-Iodine Cookbook for free, with more than 250 favorite recipes from more than 100 generous volunteer. The Cookbook is also available in Spanish and in 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 the 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 to the cookbook’s next edition, send it firstname.lastname@example.org.
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. You may join as a 1-year member ($25), 2-year member ($45), or lifetime member ($225). For our secure online Membership form and our mailed Membership form, go to our Membership 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.
- Thyroid Cancer Support Group Meetings in Your Community. For groups and details, visit: our Support Groups page.
- November 21, 2009. Speakers from Cancer Legal Resource Center at the Meeting of the ThyCa Orange County, California.
- Free Spring Workshops. Already being planned in Mid-Atlantic, Midwest, and Newfoundland and Labrador, Canada. Details will be posted on on the Conferences page.
- Thyroid Cancer Awareness Month, September 2010.
- The 13th International Thyroid Cancer Survivors’ Conference
October 15-17, 2010 in Dallas, Texas
Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
- The 9th Annual Dinner/Auction Fundraiser for Thyroid Cancer Research.
October 16, 2009 in Dallas, Texas
Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Every day, numerous people distribute ThyCa outreach materials to their physicians making them aware of a resource that can benefit their patients dealing with a thyroid cancer diagnosis.
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).
If you have questions about thyroid cancer, please send them to email@example.com and we’ll answer your question in an upcoming newsletter as well as adding to our web site content
If you have a story or anecdote about your thyroid cancer journey that you would like to share, please send it to firstname.lastname@example.org and we’ll do our best to include it in an upcoming newsletter as well as adding to our web site content.
Thank you to our writing, editing, and proofreading team for this issue of the newsletter: June C., Leah Guljord, Pat Paillard, Cherry Wunderlich, and Gary Bloom.
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 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. E-mail firstname.lastname@example.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our web site.