More than 60 Speakers, Including 22 Physicians, Confirmed for the 8th International Thyroid Cancer Survivors’ Conference on October 21-23, 2005

Sessions Will Cover Research and Treatment Advances, Insurance, Fitness, Nutrition, and Coping Skills. Attendees May Register On-Site or in Advance. Scholarships Are Available.

On October 21-23, 2005, thyroid cancer survivors, family members, and friends are invited to the 8th International Thyroid Cancer Survivors’ Conference at the Sheraton Denver West Hotel, 360 Union Boulevard, Lakewood, Colorado.

The sponsor is the national voluntary nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The 22 distinguished physicians who will speak include endocrinologists, surgeons, medical oncologists, and other specialists from the following major centers:

Cleveland Clinic Foundation, Ohio
Duke University Medical Center, North Carolina
Johns Hopkins Medical Institutions, Maryland
University of Colorado Health Sciences Center
University of Florida Shands Cancer Center, Florida
University of Texas M.D. Anderson Cancer Center, Texas
University of Utah Medical School, Utah
Washington University School of Medicine, Missouri
and other leading centers

Speakers also include specialists in the fields of pharmacy, nursing, psychology, nutrition, fitness, coping and complementary approaches for well-being, as well as survivors of every type of thyroid cancer, and caregivers.

More than 80 sessions will cover all types of thyroid cancer, one of the few cancers that is increasing in overall incidence. This educational and supportive weekend is the first conference for thyroid cancer survivors and their families and friends to be held in the Rocky Mountain region.

“This educational and supportive conference offers a wonderful opportunity to learn in depth from leaders in thyroid cancer care and research, and to share experiences with other survivors and caregivers,” says Gary Bloom, ThyCa Board Chair and Conference Coordinator. “We invite everyone interested in thyroid cancer to attend.”

The hotel has free parking, and a Park’N’Ride Bus Station (Cold Spring) is located across the street from the hotel. In addition, the Sheraton Denver West Hotel has arranged a special room rate, available through October 14.

Registration opens at 8 a.m. each day. Walk-in attendees are welcome to register on site at the conference. Attendees may register in advance online or by mail through October 15, 2005. Scholarships are available, as noted on the registration form.

For more information about the conference and the free year-round support services, education, awareness materials, and other publications available from ThyCa: Thyroid Cancer Survivors’ Association, e-mail tothyca@thyca.org, call toll-free 1-877-588-7904, write to PO Box 1545, New York, NY 1015901545, or visit the ThyCa web site.

Letter from ThyCa: Thyroid Cancer Survivors’ Association, Inc.
September 2005

Dear Friends,

I invite you to read this message and to write to the FDA (using the FDA’s online comment form, as explained below) prior to September 23, 2005, on an issue of critical importance to thyroid cancer patients.

The issue is Levothyroxine Sodium Therapeutic Equivalence. The informal term for this issue is “brand switching.”

This is a chance for all of us to make our voices heard.

The FDA has re-opened its public comment period on this issue. We now have the opportunity to try to get the FDA to reverse a decision it made more than a year ago regarding Levothyroxine Sodium Therapeutic Equivalence (brand switching).

To summarize:

In 2004, the FDA ruled that some different brands of levothyroxine sodium are bioequivalent. Because of this ruling, pharmacies are allowed to switch brands when they refill a prescription, without informing the physician or the patient.

ThyCa does not support one levothyroxine brand over another. We advocate the importance of sticking with the brand of levothyroxine you took when you had your blood measured. This issue is important, because the FDA ruling means that our levothyroxine can be changed and no one will request (or pay for) a blood test on our behalf.

The FDA did not consult the endocrinology leadership before deciding. The American Thyroid Association (ATA), American Association of Clinical Endocrinologists (AACE), and The Endocrine Society (TES) all oppose this decision. Immediately after the FDA ruling, they urged the FDA to reverse its decision. ThyCa: Thyroid Cancer Survivors’ Association, Inc., has supported their efforts, both in ThyCa’s public comments and in written messages.

On May 23, 2005, the FDA and the ATA, AACE, and TES held a day-long joint public meeting.

Speakers on behalf of the professional thyroid and endocrinology associations included two of ThyCa’s medical advisors, Paul Ladenson, M.D. of Johns Hopkins, who also is President of the ATA, and Steven Sherman, M.D. of M.D. Anderson Cancer Center.

Additional speakers from ATA, AACE, and TES included James Hennessey, M.D. of Brown University; E. Chester Ridgway, M.D., University of Colorado Health Sciences Center and 2003-2004 President of The Endocrine Society; and Leonard Wartofsky, M.D. M.P.H. of the Washington Hospital Center, the Uniformed Services University of the Health Sciences, and Georgetown University Medical School (who is also the President-Elect of The Endocrine Society).

ThyCa: Thyroid Cancer Survivors’ Association presented a statement during the public comment period, and followed with a written statement during the FDA’s open docket period.

This web page has the full transcript of the May 23 meeting:
http://www.fda.gov/cder/meeting/levothyroxine2005.htm.
ThyCa’s comments start on page 128 of the transcript. ThyCa’s web site has background information and ThyCa’s statement.

The FDA has now re-opened its docket for public comments on this topic. The docket will remain open until September 23, 2005. You may send your comments online, via this web site page:
http://www.accessdata.fda.gov/scripts/oc/dockets/comments/SEARCHRESULTS.CFM

All comments must be received by the FDA by September 23, 2005.

The docket number and title are Docket Number 2005N-0137, Levothyroxine Sodium Therapeutic Equivalence; Public Meeting. (There are many other dockets on this FDA page. Please check to see that your comments use the Levothyroxine Sodium comment form.)

This is our chance to influence a decision that is crucial to the health of thyroid cancer patients.

Please help. Please write to the FDA as soon as possible, because the deadline is approaching. Read the further details and key points below, and write to the FDA, using the online form, by September 23, 2005.

If you have any questions, please write to thyca@thyca.org.

Wishing you all good health.

Sincerely,
Gary Bloom
Board Chair
ThyCa: Thyroid Cancer Survivors’ Association, Inc.
gbloom@thyca.org

MORE DETAILS:

ATA, AACE, and TES pointed out that the FDA did not consult with the thyroidology/endocrinology associations and endocrinology leadership before it made its decision.
ATA, AACE, and TES explained that endocrinology research and clinical experience demonstrate clearly that different brands of levothyroxine are not bioequivalent.
They also noted that brand switching is particularly risky to the health of vulnerable populations, including thyroid cancer patients. This issue is also important to other thyroid patients.
Thyroid cancer specialist physicians agree that thyroid cancer patients with papillary or follicular thyroid cancer or one of their variants should stay on the same brand, because different brands produce different TSH levels at the same dose.
Thyroid cancer patients need to maintain an appropriate TSH level to prevent growth or recurrence of our thyroid cancer. Switching brands makes it impossible to maintain the TSH suppression that most of us need. Switching brands requires re-testing for TSH level after 6 weeks. Any decision to switch should be made by the patient and the physician, not the pharmacy.
The current FDA ruling means that a pharmacy can switch brands when it refills a prescription.
ThyCa agrees with ATA, AACE, TES that we do not support or oppose any particular brand of levothyroxine sodium. What is crucial is that the patient stay on the same brand and NOT switch, because switching requires the expense and life disruption of having an additional blood test for TSH level.
Further details and background are on the American Thyroid Association web site at www.thyroid.org, linked in several places in the center section of ATA’s home page.
A patient information sheet titled “Know Your Pills” is on the web site of ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Leonard Wartofsky, M.D., President-Elect of The Endocrine Society and Chairman of the Department of Medicine at the Washington Hospital Center in Washington, D.C., will speak and answer questions about thyroid cancer management on Saturday, September 17, 2005, from 10:30 a.m. to noon at the monthly meeting of the ThyCa Washington, D.C. Thyroid Cancer Support Group.

The free program will take place at the Physician’s Dining Room of Holy Cross Hospital, 1500 Forest Glen Road, Silver Spring, Maryland. The meeting is open to people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their families and friends.

The sponsor is ThyCa: Thyroid Cancer Survivors’ Association, Inc.. For more information, contact Gary Bloom, Facilitator of the ThyCa Washington, D.C., thyroid cancer support group, by e-mail atWashington_DC@thyca.org.

Leonard Wartofsky, M.D., M.P.H., M.A.C.P., is Professor of Medicine at the Uniformed Services University of the Health Sciences in Bethesda, Maryland, and Georgetown University in Washington, D,C., and Clinical Professor of Medicine at the University of Maryland, Howard University, and George Washington University Schools of Medicine. He chairs the Department of Medicine at the Washington Hospital Center and is President-Elect of the international professional association The Endocrine Society, which has more than 11,000 members in 80 countries.

Dr. Wartofsky is also a past president of the American Thyroid Association and was the 2001 recipient of the Distinguished Educator Award of The Endocrine Society. His specialty is endocrinology, and he is a world-renowned authority on thyroid disorders and thyroid cancer. He has published over 300 articles or book chapters in the medical literature, and is editor of the medical textbook titled “Thyroid Cancer: A Comprehensive Guide to Clinical Management,” and the co-editor of the patient and caregiver reference book titled “Thyroid Cancer: A Guide for Patients.”

Free services and resources for thyroid cancer survivors are organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa is a national nonprofit, volunteer organization providing person-to- person support, local support groups, e-mail support groups, a free downloadable low-iodine cookbook, a free online newsletter, thyroid cancer awareness materials, and other educational services and resources to thyroid cancer survivors, their families, and the public at no charge. ThyCa also funds thyroid cancer research grants, sponsors Thyroid Cancer Awareness Month in September. and will hold its 8th annual international conference in Denver, Colorado, on October 21-23, 2005.

For more information, visit the ThyCa web site, write PO Box 1545, New York, NY 10159-1545, call 877-588-7904, fax to 630-604-6078, or e-mail to thyca@thyca.org.

IN THIS ISSUE
Letter from the Editor
New Anaplastic Thyroid Cancer Site Launched by ThyCa
ThyCa Expands Grant Awards: Announces Two 2-Year Grants
ThyCa News Nuggets
Dr. Leonard Wartofsky Speaks at ThyCa Support Group Meeting
What’s New on the Web Site
Letter to ThyCa
ThyCa’s 8th International Conference is Just Around the Corner
More about This Newsletter and ThyCa
An Open Invitation from ThyCa
Help Us Help Each Other

LETTER FROM THE EDITOR

I recently got an e-mail from a friend who, after nearly five years, had a recurrence of thyroid cancer. The metastasis was found in his brain and he’s currently undergoing treatment.

It’s crushing to hear of cases such as my friend’s, not only because I feel terrible about his situation, but because on a more selfish (and human) level, it’s what all survivors fear. Learning of others’ recurrence is a stark reminder that the same can happen to any of us at any time. It’s a challenge to be supportive while at the same time maintaining the emotional firewall that prevents us from becoming immobilized by the fear of our own mortality.

My friend’s recurrence means that I have to find a new way to relate to him. His situation is now more urgent than mine. Does that mean that the concerns I have about an upcoming test are less valid? Do I seem petty when sharing my worries about what my tests may find when his have already confirmed the worst? I don’t have any good answers to these questions.

I do know that for all the difficulties thyroid cancer brought to my life, through ThyCa, I have made friends that I count among those closest to me. For that, I am thankful. And so I will continue to do my best to be there for my friends, as I know they will surely be for me.

Be well,
Barbara Weinstein

NEW ANAPLASTIC THYROID CANCER (ATC) WEB SITE LAUNCHED

New ATC Site Educates Patients, Families, Professionals, and Public
About One of the Most Aggressive of All Cancers.

Free Resource, Developed by Survivors and Caregivers, Is Sponsored by
ThyCa: Thyroid Cancer Survivors’ Association.

Anaplastic thyroid cancer is a very rare and highly aggressive cancer. It is difficult to treat and has long been little understood.

Now, the newly launched Anaplastic Thyroid Cancer Web Site gives patients, families, and physicians ready access to key information about this disease, treatments, clinical trials, and critical decisions involved when first diagnosed with anaplastic thyroid cancer. The medical content receives ongoing review and input from ThyCa’s Medical Advisory Council of 22 nationally known thyroid cancer specialists, as well as from additional specialists with expertise in anaplastic thyroid cancer.

The web site’s authors are anaplastic survivors and caregivers whose first-hand experience with this disease led them to choose the site’s 16 topic areas. Many participants in the site’s development lost loved ones to this cancer. Some have taken part in ThyCa’s Anaplastic Thyroid Cancer e-mail support group since it began in 1997.

These volunteers chose topics they most wished they had understood when they or their loved ones were first diagnosed. Twelve of the 16 topics are now on the site; the others will be added this fall. In addition, the site will continue to expand and to add information on treatment, research, and support services.

“I am thrilled to see our ATC-related content on the ThyCa web site, thereby filling a void and heightening ATC awareness for patients, survivors, patients’ friends and families, and physicians,” says Bradley Rubin, ATC caregiver and coordinator of the site development project. “We wanted others to know what we wished we knew. Now, we can share our knowledge more broadly. This web site will continue to grow and will add key information. We invite further contributions. Future submissions can be e-mailed topublications@thyca.org.”

To those who have lost a loved one to this disease, he adds, “you can all take comfort that this journey did not end in vain. We now have the base of a web site that those who follow can use as a starting point to make their unfortunate new journey easier than ours.”

“To those who are seeking support and information as a result of their own battle, or that of a loved one with ATC, welcome to this site and to our e-mail group,” says Cheri Wallace Lindle, ThyCa Board Member and founder in 1997 of the Anaplastic Thyroid Cancer E-mail Support Group. “I cannot thank Brad enough for putting his energy, time, and talent into this project.”

“Because anaplastic is one of the fastest-growing tumors, patients and families need current treatment information right away when they receive the diagnosis,” says Gary Bloom, ThyCa Board Chair. “This site is an important accomplishment and a highly useful tool in anaplastic thyroid cancer management.”

The new site is one of many free education and support services available from ThyCa: Thyroid Cancer Survivors’ Association (www.thyca.org).

ThyCa EXPANDS GRANT AWARDS:ANNOUNCES TWO 2005 GRANTS FOR THYROID CANCER RESEARCH

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is pleased to announce the expansion of its research grant program with the awarding of two 2-year grants, including ThyCa’s first-ever grant for research on medullary thyroid cancer. ThyCa awarded its first and second research grants in 2003 and 2004.

The recipient of the Thyroid Cancer Research Grant is Erich M. Sturgis, M.D., of the University of Texas M.D. Anderson Cancer Center in Houston, Texas. Dr. Sturgis’s research proposal is titled “Radiation Response Genotype and Risk of Papillary Thyroid Cancer: A Case-Control Study.”

The recipient of ThyCa’s first-ever Medullary Thyroid Cancer Research Grant is Matthias Schott, M.D., of the Heinrich-Heine University of Duesseldorf in Duesseldorf, Germany. Dr. Schott’s medullary thyroid cancer research proposal is “Induction of Cytotoxic Immunity in Medullary Thyroid Carcinoma by Dendridic Vaccination.” Both grant recipients will receive a second year of funding pending status reports.

ThyCa’s grants are open to all researchers and institutions worldwide. The grant review and selection process was based on proposals’ scientific merit and was conducted by the scientific review panel of the American Thyroid Association (ATA), the professional association of clinicians and researchers involved in thyroid diseases. The grant fundraising was conducted by the volunteers of ThyCa: Thyroid Cancer Survivors’ Association, Inc. through its ongoing campaign for thyroid cancer research.

Gary Bloom, ThyCa Board Chair, said, “ThyCa is proud to expand ThyCa’s grant award program. We greatly appreciate the volunteer efforts involved in this important effort. We thank the American Thyroid Association for its wonderful support and its members’ commitment to the well-being of thyroid cancer patients.”

“We are excited by the announcement of these new research grants, and wish to thank the many volunteers and donors for their loving and generous support of our research fundraising. This wonderful announcement brings us one step closer to finding cures for all thyroid cancer and a future free of thyroid cancer,” said Joni Eskenazi, ThyCa Board Member and Fundraising Chair.

ThyCa NEWS NUGGETS

Volunteers around the globe helped raise awareness of thyroid cancer during Thyroid Cancer Awareness Month, with community efforts and extensive media coverage. The awareness efforts continue year-round.
–The Awareness Wristbands are a big hit! Thousands of thyroid cancer survivors and caregivers are wearing the new teal Thyroid Cancer Awareness Wristbands, as well as giving them to family and friends. The wristbands, as well as ThyCa ribbon pins, magnets, and other Spirit Items are available through the ThyCa web site.
Missouri’s Springfield News-Leader newspaper had a feature article on thyroid cancer and Alene Miller and Denise Swain, the co- facilitators of the new ThyCa Southwest Missouri Support Group. The article was titled “Lumps, Other Signs Warn of Thyroid Cancer.”
In Texas, Karen G. shared ThyCa with her co-workers. Karen is on the Wellness Committee at the college where she works and plans to display ThyCa materials at the college’s October health fair.
In New Hampshire, Channel 9 News interviewed ThyCa outreach volunteer Debbie Hatfield, and a newspaper carried a feature article about her brother, with links to the ThyCa web site. Spreading information about the importance of early detection, treatment and follow-up is key to overcoming thyroid cancer.
In Ohio, Stephanie C., Melissa S., and Debbie T. had thyroid cancer awareness displays at homecoming games and are working with their local school district to organize thyroid cancer awareness activities. They are parents of children with thyroid cancer.
In Arizona, the Arizona Republic newspaper featured thyroid cancer in their “Living” section and quoted ThyCa Volunteer Jo Walker.
In Colorado, two newspapers, the Rocky Mountain News and the Pueblo Chieftain, had features about thyroid cancer. The Pueblo Chieftain’s article also highlighted the upcoming ThyCa Conference.
Gloria Keller, 41-year thyroid cancer survivor, retired nurse, and 5-year ThyCa volunteer, gave a presentation during the “Health Check” part of the Sunday service at the Turner African Methodist Episcopal Church in Hyattsville, Maryland. The community coordinator at Holy Cross Hospital, where the ThyCa Washington, DC, support group has been meeting since 1999 arranged ThyCa’s participation. On behalf of ThyCa, Gloria gave the church library the reference books “Thyroid Cancer: A Guide for Patients” and “Could It Be My Thyroid?” as well as awareness brochures and flyers about thyroid cancer and thyroid disorders.
Coping with Cancer magazine’s September-October issue has a thyroid cancer article and ThyCa conference announcement. This national magazine is available in physicians’ waiting rooms and other locations.
ThyCa has exhibited and distributed free awareness and resource materials at more than 40 medical meetings, cancer survivorship events, and community health fairs and programs so far this year. Many thanks to the dozens of ThyCa volunteers helping with this important outreach effort!
ThyCa continues to make information and other resources available to health care professionals. Volunteers across the U.S. and in other countries have arranged for doctors’ offices and community groups in their communities to display ThyCa materials. Thank you for your wonderful help in spreading the word!
ThyCa extends a special thank you to the American Thyroid Association for its wonderful support of patient well-being. ThyCa is an active member of the ATA Alliance for Patient Education.
The expanded 5th Edition, 2005, of ThyCa’s free Low-Iodine Cookbook is now ready and downloadable from the ThyCa web site www.thyca.org. Thank you to the more than 60 thyroid cancer survivors and caregivers who contributed more than 185 original and delicious recipes to share with other thyroid cancer survivors. Download this cookbook free of charge. This free cookbook is also available for photocopying by physicians, other health care professionals, and hospitals, clinics, and community groups.
ThyCa’s E-mail support groups keep growing, and had more than 6,500 participants at the end of September 2005. Our largest group was named an Editor’s Pick and given special recognition on the YahooGroups web site in August 2005.
ThyCa’s web site received more than 250,000 hits in September! See more web site news below, and visit the web site for the latest additions.

DR. LEONARD WARTOFKSY SPEAKS AT ThyCa SUPPORT GROUP MEETING

Nearly 50 thyroid cancer survivors and caregivers packed the meeting room in Silver Spring, Maryland, at the September 17, 2005, meeting of the ThyCa Washington, D.C. Support Group, where the guest speaker was Leonard Wartofsky, M.D.

Dr. Wartofsky is President-Elect of The Endocrine Society, past president of the American Thyroid Association, and Director of Medicine at Washington Hospital Center in D.C. Dr. Wartofsky, a world- renowned authority on thyroid cancer and thyroid disorders, is editor of the medical textbook “Thyroid Cancer: A Comprehensive Guide to Clinical Management” and the co-editor of the patient and caregiver reference book “Thyroid Cancer: A Guide for Patients.”

Dr. Wartofsky discussed TSH suppression recommendations and how they depend on individual patient circumstances, with the TSH level appropriate for the patient’s stage of the disease, considering the relative risks and benefits involved. He answered numerous questions, noting that a home-based TSH test can detect TSH greater than 5, but it’s not sensitive enough for the careful titration in the tight TSH range sought for thyroid and thyroid cancer patients.

He also discussed Thyroglobulin (Tg) as a marker for common types of thyroid cancer just as PSA is for prostate cancer. Asked about Tg levels, he noted that for people with a thyroid gland, the Tg range is 3-40 nanograms. After thyroid surgery the Tg range is 1-5. If radioiodine is totally effective, the Tg is close to 0, the goal.

WANT TO HELP OTHERS BUT NOT SURE HOW TO START? HELPFUL TIPS FOR THYROID CANCER AWARENESS, SUPPORT, AND INFORMATION

Share your thyroid cancer story with others. Tell others about the free education and support available from ThyCa: Thyroid Cancer Survivors’ Association, Inc. Services include local support groups in 35 states, one-to-one support matched by diagnosis, e-mail support groups, free downloadable Low-Iodine Cookbook, free awareness brochures, and more
Visit the Thyroid Cancer Awareness Month web page. Download flyer titled “About Thyroid Cancer.” It describes signs and symptoms to discuss with the physician, ThyCa’s free services, and more.
E-mail thyca@thyca.org with your mailing address and we’ll mail you free awareness materials to share with your friends, relatives, community groups, and physicians.Tell others about the 9th International Thyroid Cancer Survivors’ Conference in Orlando, Florida on October 27-29, 2006.
‘Wear, share, and display the Thyroid Cancer Awareness Wristband, Pin, Magnet, or other Spirit Items.

Thank you very much for your support!

WHAT’S NEW ON THE WEB SITE

ThyCa’s web site expands every week, thanks to the wonderful contributions of our web site team: Betty Solbjor, Webmistress since ThyCa’s founding; Joel Amromin, Support Groups Pages and Special Projects Webmaster; more than two dozen Publications Committee Volunteers; and the ongoing input we receive from our 22-member Medical Advisory Council and additional specialists.

A few of the newest additions:

ThyCa Comments to FDA Workshop on Levothyroxine Sodium Products, Therapeutic Equivalence, and Brand Switching
ThyCa Announces 2005 Grant Awards
More than 60 Local Support Groups in 35 States: Each group has its own web page.
The New Anaplastic Thyroid Cancer Web Site
And more

A LETTER TO ThyCa
(With our thanks to Peggy for your letter and your permission to share it with our readers.)

My dear girlfriend told me today that she was diagnosed Friday with thyroid cancer and will have full surgery this Wednesday.

After googling and finding your site, I didn’t have to go any further to get a complete understanding of what I want/need to know. After reading for 2 hours and printing about 20 pages, I am well prepared to understand her new medical terms, have a basic knowledge, and know how to best be her friend and support during this new time in her life.

Your site was not only comprehensive for a newbie like me, but it was so clearly designed that there was no frustration getting the info.

Thank you for all the time and effort building this sensitive site. I do expect to use it often and help support it.

Peggy Luippold
Texas

ThyCa’s 8th INTERNATIONAL CONFERENCE IS JUST AROUND THE CORNER

The 8th International Thyroid Cancer Survivors’ Conference kicks off in Denver, Colorado on Friday October 21, 2005 and continues through Sunday, October 23rd. The conference takes place at the Sheraton Denver West Hotel, 360 Union Boulevard, Lakewood, Colorado.

ThyCa’s conference is a unique opportunity for thyroid cancer survivors and caregivers to learn and share with others who understand just what you’re going through. This year’s conference features 22 distinguished physicians and a total of more than 60 speakers and 100 sessions. We’re excited that people from 35 states, Canada, and the Philippines have already registered. Registration is also available on site at the conference, and walk-in attendees are welcome. Scholarships are available. The registration table opens at 8 a.m. each day.

For the program schedule, complete list of speakers, transportation information, and more details, visit www.thyca.org

ThyCa’s RESEARCH FUNDRAISING DINNER: FRIDAY, OCTOBER 21, 2005 AT THE SHERATON DENVER WEST

The gala Dinner/Auction Fundraiser on Friday, October 21 in Denver helps move ThyCa toward its dream of a cure for all thyroid cancer. You may reserve your tickets for the dinner at the conference. Or, explore the Auction Offerings on the ThyCa web site, and ask a friend who’s attending to bid for you.

Our research grant funding and free support services are made possible by our dedicated volunteers and contributors, this benefit evening, and the many other wonderful Rally for Research events. Thank you to everyone!

MORE ABOUT THIS NEWSLETTER AND ThyCa

The articles in this newsletter represent the opinions of their authors and are not official positions of ThyCa: Thyroid Cancer Survivors’ Association, Inc. The articles by laypeople do not offer medical advice, as the authors are not doctors and have no medical training. Articles by physicians are educational and not intended to offer medical advice, as physicians cannot diagnose through the Internet. If you have medical questions, please consult with your physician.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org) is an all-volunteer nonprofit 501(c)(3) service organization advised by nationally recognized thyroid cancer specialists and dedicated to support, education, communication, awareness for early detection, and thyroid cancer research fundraising and research grants.

Throughout the year ThyCa offers free resources, including education through the web site, our low-iodine cookbook downloadable from the web site, several e-mail support groups, local support groups coast to coast, the person-to-person network for one-to-one support, newsletters, and the survivors’ toll-free telephone number.

Copyright (c) 2005 ThyCa: Thyroid Cancer Survivors’ Association, Inc. (www.thyca.org). We encourage you to send this newsletter to your family and friends. For permission to reprint in another electronic or print publication, please contact ThyCa.

AN OPEN INVITATION FROM THYCA

ThyCa invites thyroid cancer survivors, families, and friends to tell their friends and relatives about ThyCa’s free year-round support services and publications, including our award-winning educational web site, our free thyroid cancer awareness brochures, and our conference and other special events.

HELP US HELP EACH OTHER

We want your comments on this newsletter! Do you like it? What would you like us to print? Send your comments to newsletter@thyca.org or ThyCa: Thyroid Cancer Survivors’ Association, Inc. P.O. Box 1545, New York, NY 10159-1545

ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Serving the Public Since 1995

Early Detection Urged by Volunteers of ThyCa: Thyroid Cancer Survivors’ Association

Thyroid cancer is one of the few cancers that has increased its incidence rate over the past several years. About 25,690 people will be diagnosed with thyroid cancer in the U.S. in 2005.

September is Thyroid Cancer Awareness Month. ThyCa: Thyroid Cancer Survivors’ Association, Inc., encourages people to ask for a neck check the next time they visit their doctor. Signs to discuss with the physician include a lump or fullness in the neck, lymph node swelling, difficulty breathing or swallowing, or voice changes.

“Find It Early” is the message for Thyroid Cancer Awareness Month, sponsored by ThyCa: Thyroid Cancer Survivors’ Association. When detected early, most thyroid cancers are treatable. Early detection is the key to improving outcomes. Patient and caregiver education is also important, because thyroid cancer requires lifelong monitoring as recurrences can occur decades after treatment.

There are four types of thyroid cancer: papillary, follicular, medullary, and anaplastic, as well as variants. Papillary and follicular are the most common types, affecting three times as many women as men. Treatment for these types of thyroid cancer involves surgery, often followed by radioactive iodine therapy to remove any remaining thyroid tissue. Other treatments for some thyroid cancer may include external beam radiation and chemotherapy.

In support of Thyroid Cancer Awareness Month and to raise awareness year-round, thyroid cancer survivors, caregivers, and friends are distributing free thyroid cancer awareness brochures featuring actress Catherine Bell, wearing the Thyroid Cancer Awareness Wristbands and Awareness Ribbon Pins, and displaying the magnet ribbons available from ThyCa: Thyroid Cancer Survivors’ Association.

In addition, the 8th International Thyroid Cancer Survivors’ Conference will be held in Denver, Colorado, on October 21-23, 2005. The conference features prominent thyroid cancer specialist physicians, as well as other specialists and survivor/caregiver support group roundtables.

Free brochures and support services are available from ThyCa: Thyroid Cancer Survivors’ Association (www.thyca.org). ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an all-volunteer, non- profit organization of thyroid cancer survivors, family members, and health care professionals, dedicated to support, education, communication, and thyroid cancer research fundraising and research grants. For more information, call 1-877-588-7904, fax to 630-604-6078, send e-mail to thyca@thyca.org or visitwww.thyca.org.

Goal is to Raise Awareness of One of the Few Cancers to Increase in Annual Overall Incidence in the Past Several Years

Thyroid cancer, a cancer that affects people of all ages from very young children through seniors, is on the rise. ThyCa: Thyroid Cancer Survivors’ Association <www.thyca.org>, an all-volunteer nonprofit patient support and education organization, offering a wide array of free services and resources to thyroid cancer patients and their families, is making available a teal wristband to increase awareness of thyroid cancer.

The wristbands are available from ThyCa in packages of three for $5, and the proceeds benefit ThyCa’s outreach, support services, and thyroid cancer research grants. With each order ThyCa will also include free thyroid cancer awareness brochures and wallet cards listing ThyCa’s services and contact information.

“ThyCa intends this awareness campaign to heighten the importance of early detection, and to encourage people to ask their doctor for a neck check,” said Gary Bloom, ThyCa Board Chair and thyroid cancer survivor of Olney, Maryland.

“Teal is a healing color and chosen more than six years ago by thyroid cancer survivor and ThyCa volunteer Cherie L,” said Leah Guljord, ThyCa Assistant Chair and thyroid cancer survivor of West Melbourne, Florida.

ThyCa offers free support services to cancer patients, their families, friends, and caregivers, including a network of more than 60 support groups in 35 states, an award-winning Web site (www.thyca.org) providing extensive information about thyroid cancer, free educational materials, a free downloadable low-iodine cookbook, Thyroid Cancer Awareness Month in September, and the only annual conference on thyroid cancer—to be held October 21-23, 2005 in Denver, Colorado—featuring top physicians in the field.

For more information visit the web site, call toll-free 877-588-7904, or e-mail thyca@thyca.org.

Peter Capell, M.D., Endocrinologist, Chair of the Endocrinology Department at the University of Washington in Seattle, will speak and answer questions about thyroid cancer management on Saturday, June 18, 2005, from 10 am to 11:30 am at the monthly meeting of the ThyCa Seattle Thyroid Cancer Support Group.

The free program takes place at the Cancer Lifeline, 6522 Fremont Avenue North, Seattle, Washington. The meeting is open to people at all phases of testing, treatment, and follow-up for thyroid cancer, as well as their families and friends.

Sponsor is ThyCa: Thyroid Cancer Survivors’ Association, Inc. For more information, contact Roselle Kovitz, the Seattle thyroid cancer support group facilitator, by e-mail at Seattle-WA@thyca.org.

Free services and resources for thyroid cancer survivors are organized by ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa is a national nonprofit, volunteer organization providing person-to-person and e-mail support groups, a free downloadable low-iodine cookbook, a free newsletter, thyroid cancer awareness materials, and other educational services and resources to thyroid cancer survivors, their families, and the public at no charge. ThyCa also sponsors Thyroid Cancer Awareness Month in September and will hold its annual international conference in Denver, Colorado, on October 21-23, 2005.

For more information, visit the ThyCa web site, write PO Box 1545, New York, NY 10159-1545, or e-mail tothyca@thyca.org.

MEDIA ANNOUNCEMENT — For immediate release — 2005
Contact: Cherry Wunderlich, ThyCa Outreach Coordinator
cwunderlich@thyca.org; 301-493-8810

More than 60 Sessions Feature Physician Specialists Plus Roundtables for Survivors and Caregivers Coping with All Types of Thyroid Cancer

Thyroid cancer, one of the few cancers that is increasing in overall incidence, will be the focus of the Thyroid Cancer Survivors’ 8th International Conference on October 21-23, 2005, at the Sheraton Denver West Hotel, 360 Union Boulevard, Lakewood, Colorado.

This educational and supportive weekend is the first conference for thyroid cancer survivors and their families and friends to be held in the Rocky Mountain region. The sponsor is the national voluntary nonprofit organization ThyCa: Thyroid Cancer Survivors’ Association, Inc.

More than 60 presentations, workshops, and roundtables are designed for people with every type of thyroid cancer, from those newly diagnosed to survivors of many years, as well as family members and friends.

Physician specialists will speak and answer questions about thyroid cancer research advances, diagnosis, treatment, follow-up, and future trends in thyroid cancer care. Self-care, coping skills, emotional and physical well-being, insurance, and employment issues will be covered in sessions led by other specialists, long-term thyroid cancer survivors, and caregivers.

Details and the registration form are available on ThyCa’s web site. Attendees may register online or by mail in advance. Walk-in attendees are also welcome to attend.

Free Event Will Take Place Saturday, May 21, 2005
Sponsored by ThyCa: Thyroid Cancer Survivors’ Association

On Saturday, May 21, 2005, from 10 a.m. to 2:30 p.m., thyroid cancer patients, families, and friends are invited to a free one-day educational workshop at The Fitness Connection, 1430 W. Sherman Avenue, Vineland, New Jersey.

The workshop is sponsored by ThyCa: Thyroid Cancer Survivors’ Association and will offer presentations by physician speakers as well as support group roundtables for both patients and caregivers.

Two physicians will speak at the workshop. Jay J. Constantine, M.D. is a Clinical Senior Instructor at Hahnemann University Hospital in Philadelphia, Pennsylvania. Dr. Constantine also serves as a Clinical Assistant Professor at Temple University School of Medicine in Philadelphia.

Joseph W. Fanelle, M.D. is the Medical Director of the Department of Radiation Oncology at the South Jersey Regional Cancer Center. He also serves as the Chairman of South Jersey Healthcare in Vineland, New Jersey.

The workshop is free and open to thyroid cancer patients of all types and phases of treatment and follow-up. Family members and caregivers are also encouraged to attend. Registration occurs on site on the day of the workshop.

For more information, visit www.thyca.org or call ThyCa toll free at
1-877-844-7904 or e-mail to SouthernJersey@thyca.org or thyca@thyca.org.

ThyCa: Thyroid Cancer Survivors’ Association, Inc., is an all-volunteer nonprofit 501 (c)(3) organization of thyroid cancer survivors, family members, and health care professionals. ThyCa provides support groups in 35, person-to-person support, and a variety of publications, free of charge, to thyroid cancer survivors and their families and friends, as well as the general public. ThyCa also sponsors additional free workshops, Thyroid Cancer Awareness Month, and an annual international Thyroid Cancer Survivors’ Conference.

Web site: www.thyca.org Toll-free 1-877-588-7904 E-mail thyca@thyca.org

On May 23, 2005, staff of the U.S. Food and Drug Administration (FDA) met with representatives of the American Thyroid Association (ATA), American Association of Clinical Endocrinologists (AACE), and The Endocrine Society (TES).

The purpose of the joint public meeting was to discuss the FDA’s method for determining the bioequivalence of levothyroxine sodium products made by different manufacturers. Earlier, the three medical associations had issued a joint statement expressing concerns about the FDA method for determining therapeutic equivalence. The statement also advised patients “not to substitute thyroxine preparations for one another.”

Speakers from the ATA, AACE, and TES at the May meeting included Paul W. Ladenson, M.D., of Johns Hopkins University School of Medicine; James Hennessey, M.D., of Brown Medical School; E. Chester Ridgway, M.D., of the University of Colorado School of Medicine; Steven I. Sherman, M.D., of the University of Texas M.D. Anderson Cancer Center; and Leonard Wartofsky, M.D., of the Uniformed Services University of the Health Sciences.

In the public comment period during the May meeting, ThyCa Outreach Coordinator Cherry Wunderlich presented a statement from ThyCa (included below in text and PDF formats).

ATA’s web site <www.thyroid.org> has more details about the meeting and a discussion of the issue of therapeutic equivalence of different levothyroxine sodium products.

ThyCa’s web site has further information for patients on its “Know Your Pills” page, as noted in ThyCa’s statement.

Statement from ThyCa: Thyroid Cancer Survivors’ Association, Inc., to the Joint Public Meeting on Equivalence of Levothyroxine Sodium Products,
Washington, D.C.
May 23, 2005

Thank you for this meeting. We are from ThyCa: Thyroid Cancer Survivors’ Association. We are thyroid cancer survivors and ThyCa volunteers.

As thyroid cancer patients, we have serious concerns about the matters being discussed today.

ThyCa is a national nonprofit organization advised by nationally recognized thyroid cancer specialists. ThyCa provides free education and support for patients, families, and the public. Our services include support groups, publications, workshops, and conferences. We have 5,000 to 10,000 participants in our support groups alone. Our web site receives more than 200,000 hits each month.

The need for patient support has grown rapidly, because thyroid cancer is one of the few cancers that is increasing in incidence.

We urge you to use the guidance of the leading endocrinologists on the crucial issues related to levothyroxine sodium bioequivalence. These endocrinologists are experts on thyroid issues and thyroid patient care. We patients benefit every day from their knowledge and expertise. We greatly appreciate their dedication to patient well-being.

Like other thyroid patients, we need to be sure that our blood levels of thyroid stimulating hormone (TSH) stay at the target level needed for our individual circumstances. A precise TSH level helps prevent growth or recurrence of the most common types of thyroid cancer. Dose changes prescribed by our physicians are small, usually less than 10%. For these reasons, our web site’s “Know Your Pills” page explains key points about levothyroxine and the advice of specialists to avoid changing brands without being re-tested for TSH level.

In addition, regarding bioequivalence studies needed, with over 300,000 thyroid cancer survivors, all of whom are dependent upon thyroid hormone for their survival because they have no thyroid remaining, we are confident that more than enough thyroid cancer survivors would volunteer to participate in needed bioequvalence studies.

We strongly support the analysis and recommendations of the leading endocrinologists and the American Thyroid Association, American Association of Clinical Endocrinologists, and The Endocrine Society.

As patients, we ask you to support their recommendations. Thank you again for your time and consideration.

—Gary Bloom, Board Chair
—Cherry Wunderlich, Corresponding Secretary