HOME

ThyCa Journeys Newsletter
January 2008

Support and communication for thyroid cancer survivors and families. A free publication of:

ThyCa: Thyroid Cancer Survivors' Association, Inc.
877-588-7904
thyca@thyca.org

In This Issue

• ThyCa To Award New Research Grants in 2008
• ThyCa News Nuggets
• Being in a Clinical Trial: A Patient’s Perspective
• Clinical Trials: Thoughts from a Patient and Caregiver
• Clinical Trial News: XL184 for Medullary Thyroid Cancer
• Clinical Trials: More Information from ThyCa
• Low-Iodine Recipe of the Month
• Want To Help?

---

ThyCa To Award New Research Grants in 2008

In 2008, for the sixth year in a row, ThyCa: Thyroid Cancer Survivors' Association, Inc. will award new grants for thyroid cancer research, ThyCa Executive Director Gary Bloom has announced.

Each grant will be for 2 years. One grant will support research on follicular-cell-derived thyroid cancer, including papillary, follicular, anaplastic, and variants. The other grant will support research on medullary thyroid cancer.

The ThyCa Research grants are open to all researchers and institutions worldwide. An independent expert panel of the American Thyroid Association (ATA) will select the grant recipients. ATA is the professional association of clinicians and researchers concerned with thyroid diseases.

The Call for Proposals and eligibility requirements are available on the ATA web site on this page: http://thyroid.org/professionals/education/grants_thyca.html. The deadline for submission of a proposal summary to the ATA is January 31, 2008. The ATA Research Committee will rank proposals according to their scientific merit. ATA will notify the authors of selected proposals by early March and will invite them to submit complete grant applications.

“Research offers hope for finding cures for all types of thyroid cancer, and more thyroid cancer research is urgently needed. We greatly appreciate the ATA’s support in our research grant process,” said ThyCa Executive Director Gary Bloom. "We are grateful to all our generous donors and volunteers for making these grants possible."

The ThyCa grants, begun in 2003, are the first-ever thyroid cancer research grants to be funded entirely by thyroid cancer patients, caregivers, and friends.

ThyCa invites everyone to join us in our quest to find a cure for all thyroid cancer: http://www.thyca.org/donations.htm.

top of page

ThyCa News Nuggets

Indiana’s First Support Group. Welcome to our new support group in Indianapolis, Indiana. And thank you to Michelle Irwin for starting the group. The group meets on the fourth Wednesday of every month. The first meeting will be the evening of March 26. For details, visit
www.thyca.org/sg/in_indianapolis.htm

Denver Support Group Sets 2008 Meeting Schedule. Welcome to the facilitators Jo Marie Bushell and Carol Condit of the Denver, Colorado, Support Group, now meeting on the third Monday evening each month. Find out more at
www.thyca.org/sg/co_denver.htm.

Baltimore Support Group To Hear Guest Speaker at February 9th Meeting. "How Physical Therapy Can Facilitate Your Recovery" will be the topic at the February meeting of the Baltimore, Maryland, Support Group. Speaker will be Cheryl Ambroza, physical therapist at St. Joseph's Hospital in Baltimore. For meeting details and contact information for Vanda White, the group’s facilitator, see
www.thyca.org/sg/md_baltimore.htm.

Dozens of Groups Meet Each Month. Support group meetings are wonderful ways to meet others in your area, discuss thyroid cancer face to face, and hear and share your experiences and coping tips. Each group has its own web page. Find the group nearest you: www.thyca.org/sg/local.htm.

Want To Start a Group in Your Area? ThyCa will help you. E-mail Sara Brenner, ThyCa’s Director of Support Group Development: at support_coord@thyca.org.

Childbearing and Thyroid Cancer—New ThyCa E-mail Support Group.
We’re pleased to announce the start of our tenth e-mail support group to meet specific needs of people whose lives have been touched by thyroid cancer. The Childbearing and Thyroid Cancer Support Group brings together women and men of childbearing age who are coping with issues related to childbearing and being parents during testing, treatment, and follow-up for thyroid cancer. ThyCa volunteers Peggy Melton and Jennifer Fryns are the moderators. This free support group is available 24 hours a day to people worldwide. For details and to join, go to: www.thyca.org/email.htm#childbearing.

Mark the Dates and Plan to Attend!

• The 7th Annual Mid-Atlantic Thyroid Cancer Survivors’ Workshop
  Saturday, May 10, 2008. Falls Church, Virginia (near Washington, DC, and I-495) 8 a.m. – 5 p.m. FREE. Physician Speakers, Survivor/Caregiver Roundtables, and More. Sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc.
• More Spring Workshops Being Planned!
• The 11th International Thyroid Cancer Survivors’ Conference. October 17-19, 2008. St. Louis, Missouri at the Sheraton Westport.

Visit our web for details: www.thyca.org/conferences.htm.

top of page

Being in a Clinical Trial: A Patient’s Perspective
By Patti Malloy, Ohio
From an article to be added to the web site. For these and more questions and information, visit www.thyca.org/questions.htm as well as the clinical trials section: www.thyca.org/clinical_trials.htm):

Some Questions To Ask Before Entering a Clinical Trial

The Study

• What is the purpose of the study?
• Why do researchers think the approach may be effective?
• Who will sponsor the study?
• Who has reviewed and approved the study?
• How are study results and safety of participants being checked?
• How long will the study last?
• What will my responsibilities be if I participate?
• What is the protocol if I’m part of the control group instead of the clinical trial?

Possible Risks and Benefits

• What are my possible short-term benefits?
• What are my possible long-term benefits?
• What are my short-term risks, such as side effects?
  What are my possible long-term risks?
• What other (treatment) options do people with my risk level or type of cancer have?
• How do the possible risks and benefits of this trial compare with those options?

Participation and Care

• What kinds of therapies, procedures and/or tests will I have during the trial?
• Will they hurt, and if so, for how long?
• How do the tests in the study compare with those I would have outside of the trial?
• Will I be able to take my regular medications while in the clinical trial
• Where will I have my medical care?
• Who will be in charge of my care?

Personal Issues

• How could being in this study affect my daily life?
• Can I talk to other people in the study?

Cost Issues

• Will I have to pay for any part of the trial such as tests or the study drug?
• If so, what will the charges likely be?
• What is my health insurance likely to cover?
• Who can help answer any questions from my insurance company or health plan?
• Will there be any travel or child care costs that I need to consider while I am in the trial?
  

top of page

Clinical Trials: Thoughts from a Patient and Caregiver
By Clayton and Rose Twigg
From an article to be added to ThyCa’s web site. Clayton, a 10-year survivor of anaplastic thyroid cancer, and Rose have also contributed to the Anaplastic Thyroid Cancer web site: www.thyca.org/atc.

There are several types of clinical trials:Prevention trials, Screening trials, Diagnostic trials, Treatment trials, Supportive Care or Quality of Life, Genetic Studies.

• Participation in a clinical trial is a very individual choice and because it is your choice, you may choose to leave the study at any time for any reason.
• Since there is much to be considered, you may want to discuss the decision with family and friends. Also consider getting a second medical opinion about where you are in your treatment, whether you should consider participating in a clinical trial, and, this specific clinical trial.
• Though your main concern may be, how do risks, side effects and possible benefits compare to current available treatment, no less important is how participation may impact daily life:
  • How often must I see the doctor / receive treatment / come in for testing?
  • How long will I be in the study if I stay until completion?
  • Will I be hospitalized to receive treatment?
  • Who pays for the treatment - does the study sponsor or insurance cover some or all of the cost?
  • What expenses are my / my insurance company’s responsibility, might I be reimbursed for some?
  • What are the benefit and the risks?
• Informed Consent is the process by which you agree to participate in a clinical trial after having had the purpose, treatment and testing procedures, risks and benefits explained to you.
• You may want to have a family member or friend with you during the consent process. Much information will be shared; two pairs of ears are better than one.
• Informed Consent will be conducted in the following manner. It should:
  • take place without undue influence or pressure from the study staff, - allow subjects time to consider the research before signing the consent,
  • be conducted in a private place and manner,
  • be conducted with words understandable to subjects & written at an 8th grade reading level
  • allow subjects the opportunity to ask questions
  • allow the subject to take home an unsigned copy of the consent form to be shared with family/friends prior to enrollment if he/she so chooses
  • provide a certified translator for those who are non English speaking in the subject’s first language

Once enrolled, you will be given a signed & dated copy of the consent form for your records. Consent forms will vary depending upon several factors, including disease site & disease stage, intervention proposed and individual Institutional Review Boards (IRB).

top of page

Clinical Trial News: XL184 for Medullary Thyroid Cancer

ThyCa shares news of new clinical trials for the rare types of thyroid cancers (medullary and anaplastic), and also links to complete lists of all thyroid cancer clinical trials, plus background information for patients, on our web site’s Clinical Trials section (www.thyca.org/clinical_trials.htm).

XL184-001, a study of XL184 in adults with advanced malignancies is currently active and is recruiting participants.

The purpose of this study is to determine the best and safest dose of XL184 administered orally. XL184 is a new chemical entity that inhibits VEGFR2, MET, and RET, kinases implicated in tumor formation, growth, and migration.

At least 20 patients with Medullary Thyroid Cancer (MTC) will be enrolled at the maximum tolerated dose to evaluate the effect of XL184 in this population.

Contacts and Locations

This trial, XL184-001, is active at the following locations:-

• University of Chicago, Chicago, Illinois
  Contact: Linda Janisch, R.N. ljanisch@medicine.bsd.uchicago.edu
  Principal Investigator: Ravi Salgia, M.D.
• MD Anderson Cancer Center, Houston, Texas
  Contact: Michelle Purdom 713-794-5177
  Principal Investigator: Razelle Kurzrock, M.D.

Activation is planned at the following locations:

• Fox Chase Cancer Center, Philadelphia, Pennsylvania
  Contact: Roger Cohen, MD 215-728-4300
• John Hopkins Medical Institutions, Baltimore, Maryland
• Memorial Sloan Kettering Cancer Center, New York, New York

For additional information, please refer to ClinicalTrials.gov.

top of page

Clinical Trials: More Information from ThyCa

Current clinical trials open to thyroid cancer patients:

Background information for patients and caregivers, information about some trials for rare thyroid cancer, plus links to all the thyroid cancer clinical trials in the databases of the National Cancer Institute and the American Thyroid Association:

• www.thyca.org/clinical_trials.htm
• www.thyca.org/atc/treatment.htm#trials

top of page

Low-Iodine Recipe of the Month
For the temporary low-iodine diet when preparing to receive radioactive iodine.

FRANCES’S BROWNIES

INGREDIENTS

2 cups unbleached all-purpose flour
2 cups white sugar
3/4 cup unsweetened cocoa powder
1 teaspoon baking powder
1 teaspoon salt (non-iodized, not sea salt)
1 cup water
1 cup vegetable oil
1 teaspoon vanilla extract

DIRECTIONS

• Preheat the oven to 350 degrees F (175 degrees C).
• In a large bowl, stir together the flour, sugar, cocoa powder, baking powder and salt. Pour in water, vegetable oil and vanilla; mix until well blended. Spread evenly in a 9x13 inch baking pan.
• Bake for 25 to 30 minutes in the preheated oven, until the top is no longer shiny. Let cool for at least 10 minutes before cutting into squares.

Contributed by Frances P. of Maryland

Thank you, Frances! Your recipe will be added to the next edition of the FREE Downloadable Low-Iodine Cookbook. Download the cookbook, with more than 250 favorite recipes from more than 200 generous volunteers, here: www.thyca.org/Cookbook.pdf.

Invitation! Send your favorite recipe to recipes@thyca.org, for a future newsletter and the cookbook’s next edition.

top of page

Want To Help?

Here are four ways:

• Volunteer: www.thyca.org/volunteer.htm
• Become a Member: www.thyca.org/membership.htm
• Donate: www.thyca.org/donations.htm
• Raise Awareness—Get Free Materials: www.thyca.org/awareness.htm

---

ThyCa NEWS NOTES
Copyright (c) 2008 ThyCa: Thyroid Cancer Survivors' Association, Inc.

Thank you to the writers, editors, and proofreaders for this issue: Gary Bloom, Patti Malloy, Frances P., Clayton Twigg, Rose Twigg, and Cherry Wunderlich.

The deadline for articles and news items is the first day of each month. Suggestions for articles are welcome.

We invite you to send News Notes to your family and friends. News Notes are also published on on this page: www.thyca.org/newsletters.htm. For permission to reprint in another electronic or print publication, please contact us.

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 www.thyca.org.