|
|||||||||
|
SUPPORT SERVICES ABOUT HOW TO HELP ABOUT ThyCa To view
|
In This Issue
Take Part in Three Different Surveys for Thyroid Cancer Patients 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. You can see the different surveys as well as get to all of them by going to the ThyCa web site. Select the survey link at the top right of the web site home page. Or go directly to this web page: www.thyca.org/surveys.htm. Each survey takes just a few minutes to complete. The surveys were developed by teams led by four of ThyCa’s Medical Advisors:
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.
Please complete the surveys as soon as possible. Thank you for your participation. New FNA Guide for Physicians Available from ThyCa 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 thyca@thyca.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 (www.thyca.org/clinical_trials.htm) for the following:
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. ThyCa Orange County, CA, Support Group To Host Speakers from Cancer Legal Resource Center 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. For further details, visit the group’s web page at Annual Conference Draws Large Attendance 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.
Dinner/Auction Raises More Than $35,000 for Thyroid Cancer Research 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 thyca@thyca.org. This is our web site, and it benefits from everyone's contributions. It's also a great way to start being involved! Newest Local Support Groups Form in Connecticut and New York 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 our Guestbook 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. My
Experience at ThyCa's 2009 Conference 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! Low-Iodine
Recipe of the Month George's Turkey Bolognese 1 to 1 1/2 lbs
Lean Ground Turkey Mix all dry ingredients
together first. Sauce Sauté garlic
and onions in the olive oil, until translucent. Add Crushed tomatoes
and tomato paste. Cook on low flame for approx 10 minutes. 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 volunteers, here: www.thyca.org/Cookbook.pdf. The Cookbook is also available in Spanish at: http://www.thyca.org/CookbookEsp.pdf and in French at: www.thyca.org/recipes-fr.pdf. 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 to recipes@thyca.org. You’re Invited To Become a Member 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.
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), so click here to give: (www.thyca.org/donations.htm) If you have questions about thyroid cancer, please send them to thyca@thyca.org 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 thyca@thyca.org and we’ll do our best to include it in an upcoming newsletter as well as adding to our web site content. About
ThyCa NEWS NOTES 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 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-mail thyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our web site.
|
||||||||
