ThyCa News

ThyCa NEWS NOTES - January 2009

01/2009

In this issue:


Five FREE Spring Workshops — Preview

Five workshops are scheduled around the United States for Spring 2009.

These free events offer terrific opportunities to learn from experts and meet other thyroid cancer survivors and caregivers.

  • You may come for part or all of a workshop.
  • Free. Register either online or onsite at the workshop.
  • For more information, e-mail to thyca@thyca.org or call 1-877-588-7904.
  • Visit ThyCa’s web site for further details about the speakers, programs, and directions.


Midwest 5th Thyroid Cancer Survivors' Workshop:

Saturday, April 18, 2009
8 a.m – 4:30 p.m.
Columbia, Missouri

Medical Professional Speakers:

  • From University of Missouri Hospital, Columbia, MO - Paul Dale, M.D., Surgical Oncologist, Debra Koivunen, M.D., Endocrine Surgeon, Daniel Miller, Medical Student, Greg Renner, M.D., Head and Neck Surgeon, Debbie Ritchie, MSN, APRN, BC, FNP, Advanced ENT Nurse Practitioner, Troy Scheidt, M.D., ENT Physician, Amolak Singh, M.D., Nuclear Medicine, and Robert Zitsch, M.D., Head and Neck Surgeon
  • From Johns Hopkins University School of Medicine, Baltimore, MD - Paul Ladenson, M.D., Endocrinologist
  • Topics: Thyroid Cancer: Questions & Answers • Thyrogen Update • Thyroid Cancer Surgery • Medullary Thyroid Cancer: An Overview and Discussion • Talk with a Pharmacist • Enjoying the Low-Iodine Diet • The Doctor - Patient Relationship • Survivor/Caregiver Support Group Roundtables

New Jersey 3rd Thyroid Cancer Survivors' Workshop:

Saturday, April 18, 2009
9 a.m. – 3 p.m.
Vineland, New Jersey

Speakers and Topics to be announced soon.

Mid-Atlantic 8th Annual Thyroid Cancer Survivors' Workshop:

Saturday, May 16, 2009
8 a.m – 5 p.m.
Takoma Park, Maryland (near Washington, DC, and I-495)

Physician Speakers Already Confirmed from National Institutes of Health, Bethesda, MD, and Washington Hospital Center, Washington, DC; more to be confirmed

San Diego/Southern California Thyroid Cancer Survivors’ Workshop:
Saturday, May 16, 2009
8:30 a.m. – 1 p.m.
San Diego, California
Co-Sponsored by University of California, San Diego, Medical Center and ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Physician Speakers from University of California, San Diego, Medical Center. Ernest Belezzuoli, M.D., Nuclear Medicine Physician, Michael Bouvet, M.D., Surgeon, Kevin Brumund, M.D., Surgeon, Charles Choe, M.D., Endocrinologist, James McCallum, M.D., Endocrinologist, Deborah Oh, M.D., Endocrinologist, Robert Weisman, M.D., Surgeon.

Topics:

  • Introduction/Overview of thyroid cancer
  • Yhyroid ultrasound for diagnosis and followup
  • Thyroid hormone replacement issues for patients
  • Neck dissection for thyroid cancer: When do lymph nodes need to be removed?
  • Radioactive iodine ablation: why, when, who, and how much?
  • Complications of thyroid surgery
  • Medullary Thyroid Cancer and MEN2
  • New treatment options for thyroid cancer.

Texas/Southwest 3rd Annual Thyroid Cancer Survivors' Workshop:
Saturday, May 16, 2009
Dallas, Texas

Speakers and Topics to be announced soon.

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Speaker on Bone Health and Thyroid Cancer

Errol Rushovich, M.D., To Speak on Bone Health Related to Thyroid Cancer at the ThyCa Baltimore Thyroid Cancer Support Group Meeting on Saturday, March 14, 2009, from 10:30 a.m. to Noon
FREE

Bone Health Related to Thyroid Cancer is the topic of a physician’s talk on Saturday, March 14, 2009, in Baltimore, Maryland, at the monthly meeting of the ThyCa Baltimore Support Group of ThyCa: Thyroid Cancer Survivors’ Association, Inc.

The seminar takes place from 10:30 a.m. to noon at The Cancer Institute at Sinai Hospital, 2402 West Belvedere Avenue, located in suburban Baltimore, Maryland, north of the city, inside Interstate 695, just west of Interstate 83, and near Northern Parkway.

The free meeting is open to everyone interested in thyroid cancer, as well as family members and friends.

Guest Speaker is Errol Rushovich, M.D., Medical Director for The Center for Bone Health and Division of Endocrinology at Mercy Hospital in Baltimore. He will speak and answer questions.

Dr. Rushovich is Board Certified in Endocrinology and Internal Medicine and has a special interest in endocrine disorders and implementing preventive strategies. He completed his residency at Mt. Sinai Hospital in Chicago and his fellowship training at the University of Michigan at Ann Arbor. He also held a faculty appointment at Michigan State University.

For more information, contact Vanda White, ThyCa Baltimore Support Group Facilitator at 410-653-3883 or e-mail to Baltimore-MD@thyca.org or to thyca@thyca.org.

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Support Group Meetings – Welcome and Invitation.

Every month, more than 60 thyroid cancer support groups hold meetings. Support group meetings are open to everyone whose lives have been touched by thyroid cancer.

The meetings offer wonderful opportunities to meet others in person and share experiences, strength, and hope while learning from others with varied situations with their thyroid cancer.

We’re adding new groups regularly, and welcome the newest group, the Newfoundland and Labrador ThyCa Group, which will start meeting in St. John’s, Newfoundland, Canada, in April 2009.

Click here for a complete list of groups, contact information, and meeting schedules or, if no internet, call: 877-588-7904

If you’re interested in starting a group in your area, contact support_coor@thyca.org.

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New Locations Added for Phase 3 Clinical Trial for Advanced Medullary Thyroid Cancer

Many investigator locations have recently begun recruiting patients for the XL184 phase 3 clinical trial for advanced Medullary Thyroid Cancer (MTC). This clinical trial is designed specifically for MTC. The drug was "designed" to strategically target different pathways by which MTC cells survive, multiply, or even thrive, while minimizing side effects of the drug that might be caused by unbeneficial traits of the drug.

You can find this and all clinical trials through ThyCa’s Clinical Trials page. This page links to the National Institutes of Health database of clinical trials. It also gives helpful background information about clinical trials, as well as checklists and questions developed by ThyCa volunteers who have taken part in clinical trials.

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Our Free Guestbook

It’s quick and easy to sign up to receive our free online newsletter, plus announcements of ThyCa events and activities. It’s a great way to stay connected to the thyroid cancer community, and to stay up on changes in treatments and testing methods, even if you’re a long-term survivor.

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.

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What’s New on the Web Site?

Our web site has more than 650 pages of content. 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; 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 contribution. It's also a great way to start being involved!

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Become a ThyCa 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 one-year member ($25), two-year member ($45), or lifetime member ($225).

Click here or our secure online Membership form and out mailed Membership form.

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Low-Iodine Recipe of the MonthContributed by Dana R.

Grandma Sylvia's Chocolate Macaroons

12 ounces semi-sweet chocolate chips (any without milk fat or salt)
4 egg whites
1 cup sugar
2 teaspoons vanilla
8 ounces shredded coconut (find coconut with no salt)
Pinch of noniodized salt

Preheat oven to 350 degrees. Melt chocolate in double boiler. Whip 4 egg whites until stiff. Put mixer on a slow speed. Add one cup sugar (very gradually!). Add vanilla and salt to the mix. Then the melted chocolate.Then the whole package of shredded coconut. Place a brown paper grocery bag (logo side down) or some parchment paper on top of a cookie sheet. Place dollops of mixture on bag or parchment paper. Bake for 15 minutes. Let cool.

Dana says, “This is a Passover recipe from my grandmother. The only alteration for low-iodine is using unsweetened coconut. These are much better than store bought macaroons, and they freeze well after they are baked.”

Thank you, Dana! Your recipe will be added to the next edition of the FREE Downloadable Low-Iodine Cookbook.

Download the 6th edition of the Low-Iodine Cookbook, with more than 250 favorite recipes from more than 100 generous volunteers.

This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. 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 torecipes@thyca.org.

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I Am a Thyroid Cancer SurvivorBy Pat Paillard

I never really thought about my thyroid. I never knew all that it did for me. It controls metabolism and that involves a lot of bodily functions. I didn't know it could get cancer.

Then, all of a sudden, a doctor told me I had a nodule that was suspicious for papillary carcinoma. Well, I know what carcinoma is and all of a sudden my life changed.

First, I think, you are scared that you have cancer. Then you wonder what it's going to take to get rid of it forever. You know you will be faced with tests, surgery, treatments, and lots of doctor visits, but nobody tells you all that is involved with thyroid cancer. I was told that my parathyroids could be injured during the thyroidectomy but I would be able to take calcium and Vitamin D for a while to correct that problem if it happened. Well, mine were injured and I have a lifetime of taking lots of calcium and prescription Vitamin D. Sometimes I even get tingling in my feet, hands and lips due to the hypoparathyroidism but nobody told me about that either.

There are a lot of uncertainties with cancer. I can only really speak for the ones involving my kind of cancer. Usually with the most common types of thyroid cancer (papillary and follicular and their variants) you don't need external radiation, but you may have to take a radioactive material internally. You have to swallow pills or drink a liquid in high doses to kill the remnant thyroid/cancer cells left from your surgery. You become radioactive!

If you have papillary or follicular thyroid cancer, you either receive injections of recombinant TSH (Thyrogen) or else you have to be totally off your thyroid replacement medicine for a while before the radiation (RAI) treatment and scans. If you have to go off your thyroid hormone replacement, you may become so tired you can't function properly. No one ever told me about this either.

After you have had the surgery, RAI, scans, and replacement therapy you must be screened for the rest of your life to see if the cancer has recurred and if so you go through perhaps surgery, scans, TAI and more treatment again.

We can beat IT but it would be nice to know exactly what we are to face in doing so before we go through any of it.

It's nice to know that ThyCa is there for us, the thyroid cancer survivors. We can turn to ThyCa for information, support, and much more in our journey with Thyroid Cancer.

Seek out ThyCa, use all the services, come to the conferences, and meet the people involved in this organization.. You will be glad you did. You will become an informed patient and not someone who is frightened of every aspect of this disease. Don't go through it alone!

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Want To Volunteer?

We welcome new volunteers at any time. To learn about volunteer opportunities, visit our Volunteer page. You can sign-up to volunteer online using our guestbook.

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Thank You From ThyCa!

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.

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You’re Invited To These Upcoming Thyroid Cancer Events!

  • Thyroid Cancer Support Group Meetings in Your Community
  • • Free One-Day Regional Workshops. Watch the web site for details. Workshops are planned for:
    • - Columbia, Missouri
    • Dallas, Texas
    • San Diego, California
    • Southern New Jersey
    • Takoma Park, Maryland, near Washington, DC
    • with more possibilities …
  • The 12th International Thyroid Cancer Survivors’ Conference
    October 16-18, 2009
    Boston, Massachusetts
    Sheraton Ferncroft Hotel in Danvers
    Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.

Visit the website for details. Download the conference flyer and help spread the word.

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Every Day…

Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors' Association, Inc..

Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.

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Ask ThyCa

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.

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About ThyCa NEWS NOTES
Copyright (c) 2009 ThyCa: Thyroid Cancer Survivors' Association, Inc.

Thank you to our writing, editing, and proofreading team for this issue of the newsletter: Leah Guljord, Pat Paillard, Dana R., 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 the web site.


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