ThyCa
News Notes
June 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
Conference
Preview: Speaker Introductions
We’re honored
to introduce 27 distinguished medical professionals already confirmed
for the 11th Annual International Thyroid Cancer Survivors’ Conference,
which will take place in St. Louis, Missouri on October 17-19, 2008.
Surgery:
- James H. Boyd,
M.D., St. Johns Mercy Medical Center, MO
- Douglas B.
Evans, M.D., University of Texas, M.D. Anderson Cancer Center, TX
- Paul R. Krakovitz,
M.D., The Cleveland Clinic Foundation, OH
- Mira Milas,
M.D., The Cleveland Clinic Foundation, OH
- Jeffrey F.
Moley, M.D., Washington University School of Medicine, MO
- David Myssiorek,
M.D., F.A.C.S., New York University Clinical Cancer Center, NY
- Joseph Scharpf,
M.D., The Cleveland Clinic Foundation, OH
- Julie Ann Sosa,
M.D., M.A., Yale University School of Medicine, CT
Endocrinology:
- Rebecca Brown,
M.D., University of Chicago Medical Center, IL
- Mimi Hu, M.D.,
University of Texas, M.D. Anderson Cancer Center, TX
- Uzma Khan,
M.D., University of Missouri, MO
- Paul W. Ladenson,
M.D., Johns Hopkins Medical Institutions, MD
- Bryan McIver,
M.B.Ch.B., Ph.D., Mayo Clinic, Rochester, MN
- Matthew D.
Ringel, M.D., Ohio State University College of Medicine, OH
- \Steven I.
Sherman, M.D., University of Texas, M.D. Anderson Cancer Center,
TX
- Jennifer A.
Sipos, M.D., University of Florida Shands Cancer Center, FL
- Beatriz Tendler,
M.D., University of Connecticut Health Center, CT
- R. Michael
Tuttle, M.D., Memorial Sloan-Kettering Cancer Center, NY
- Irini E. Veronikis,
M.D., St. Johns Mercy Medical Center, MO
- Steven G. Waguespack,
M.D., University of Texas, M.D. Anderson Cancer Center, TX
Nuclear Medicine,
PET/CT, and Radiology:
- A. Cahid Civelek,
M.D., University of Louisville, KY
- Perry W. Grigsby,
M.D., Washington University School of Medicine, MO
- Edward B. Silberstein,
M.D., University of Cincinnati, OH
Medical Oncology:
- Marcia S.
Brose, M.D., Ph.D., University of Pennsylvania, PA
- Scot C. Remick,
M.D., Mary Babb Randolph Cancer Center, WV
Dentristry:
- Christopher
M. Wolken, D.D.S., St. Louis, MO
Endocrine Nursing/Research:
- Pamela Schultz,
R.N., Ph.D., New Mexico State University, NM
More to be confirmed.
Other Specialists
and Survivor/Caregiver Roundtable Discussions
- Get-Acquainted
Roundtables
- Coping Skills:
Dealing with Fears about Testing, Treatment
- Health Insurance
Coverage, Appeals, Portability
- Being in a
Clinical Trial: Things To Consider, Questions To Ask
- Coping with
Voice Issues
- Neck Dissection
Recovery
- Living with
Thyroid Cancer Over the Long Term
- ….and many
more
For more details,
registration, and hotel rooms, go to
http://www.thyca.org/conferences.htm.
For conference
questions or to volunteer before or during the conference, e-mail
to conference@thyca.org
We look forward
to seeing you in St. Louis!
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Clinical
Trial News: Phase III Trial of XL184-301 for Medullary Thyroid Cancer
On June 16, 2008
June, Biopharmaceutical company Exelixis Inc. said Monday it reached
an agreement with the Food and Drug Administration on the design of
a Phase III clinical trial for a drug to treat medullary thyroid cancer.
Results of previous
clinical trials were presented at the 2008 American Society of Clinical
Oncology meeting. Exelixis said it plans to initiate the late-stage
trial of XL184 this summer. The first of the trial’s several planned
sites is now recruiting patients.
ThyCa’s web site
has a clinical trials section. In it you’ll find links to all clinical
trials for all types of thyroid cancer, plus background information
about clinical trials and what you should know. Go to:
http://www.thyca.org/clinical_trials.htm
For information,
questions, and checklists developed by ThyCa volunteers who have participated
in clinical trials, go to:
http://www.thyca.org/clintrialQA.htm
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Newest
Support Group Begins in Northern New Jersey
Welcome to ThyCa
Northern New Jersey, which will be meeting in Denville, New Jersey
on the third Tuesday evening of every month starting on July 15, 2008.
The facilitators
are Candy Larkins, R.N. and Diane Wood, L.C.S.W. You’ll find meeting
details and contact information on the group’s web page:
http://www.thyca.org/sg/nj_denville.htm
There are now
ThyCa Support Groups in more than 70 communities around the United
States and in Costa Rica and Philippines. These groups are wonderful
places to get to know other survivors and caregivers in your community,
face to face.
Each group has
its own web page. To find the group nearest you, go to http://www.thyca.org/sg/local.htm.
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Want
To Start a ThyCa Support Group in Your Community?
ThyCa will help
you, with training and materials and ongoing support. To find out
more about starting a group, contact Sara Brenner, Director of ThyCa
Local Support Group Development, at
support_coord@thyca.org
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Research
Advocacy: ThyCa and the 2008 AACR Scientist—Survivor Program
Round 2: Progress, Youth, and Hope
By Joel Amromin, ThyCa Los Angeles Support Group Co-Facilitator and
Board Member for ThyCa: Thyroid Cancer Survivors’ Association
This year was
my second year representing ThyCa as a participant in the American
Association for Cancer Research Scientist-Survivor Program (SSP).
The SSP was held in connection with the 2008 AACR Annual Meeting.
This time, because
I was at last year’s meeting, I could sense the pace of progress in
cancer research that was not obvious last year. Much of this progress
has resulted from the mapping of the human genome and the associated
understanding of chain reactions in normal and cancerous cells.
I also took a
closer look at the demographics of research presenters. I came away
with hope.
Last year, Dr.
Jean-Pierre Issa from the M.D. Anderson Cancer Center talked to us
about epigenetics, which, in simplified terms, is the study of those
parts of the DNA and associated cell mechanisms that are not genes.
These play critical roles in the cell’s ability to translate the genes
into instructions for building the right proteins at the right time.
Dr. Issa said
that therapies based on epigenetics were still primarily applicable
only to liquid tumors, but that Steven Sherman, M.D., also of M.D.
Anderson, was starting to look into epigenetics in solid tumors. (Editor’s
note: Dr. Sherman is a thyroid cancer specialist and is a ThyCa medical
advisor.)
This year, Dr.
Sherman spoke about New Directions and Targeted Therapies in a session
on thyroid cancer. He described using Decitabine in Phase 1I clinical
trials to see if it can restore radioactive iodine uptake in patients
with metastatic papillary or follicular thyroid cancer that is unresponsive
to radioactive iodine I 131.
Regardless of
the trial outcomes, seeing this presentation highlighted the exciting
progress being made as cutting-edge epigenetic research moves into
the clinical arena, even if only in early trials.
(To read the complete
article, go to http://www.thyca.org/news/advocacy08.htm)
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Online
Communities Grow
Around the clock,
seven days a week, the nearly 9,000 thyroid cancer survivors and caregivers
in our e-mail support groups share their experiences and give and
receive encouragement and support. More people join every day.
The 10 ThyCa E-Mail
Groups offer discussions on coping with each type of thyroid cancer,
as well as varied situations with thyroid cancer.
The e-mail groups
are Thyca (papillary and follicular), Medullary Thyroid Cancer, Anaplastic
Thyroid Cancer, Pediatric Thyroid Cancer, Long-Term Survivors, Advanced
Thyroid Cancer (metastatic papillary and follicular), Childbearing
and Thyroid Cancer, Mental Challenges, Love-Loss-Legacy, and the Caregivers
Support Group.
To find out more,
or to join a group, visit http://www.thyca.org/email.htm.
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One-To-One
Support Available Year-Round
Our Person To
Person Network serves thyroid cancer survivors around the world, giving
one-to-one support from ThyCa volunteers matched by type of thyroid
cancer.
To find out more
about the Person To Person Network, and to ask to be matched to a
Person To Person Volunteer, go to http://www.thyca.org/tppn.htm.
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Golfers
and Friends Remember Megan and Raise Funds for Research
On May 18, 2008,
“Big” John Oaks, proprietor of the Hanging Tree Saloon in Bracken,
Texas, generously organized and hosted a golf tournament in memorial
tribute to longtime ThyCa Volunteer Megan Stendebach.
John wrote, "The
7th annual Hanging Tree Saloon Golf Tournament for Thyroid Cancer
Research, which has been renamed the 7th Annual Megan Stendebach Memorial
Golf Tournament for Thyroid Cancer Research raised more than $13,000
this past May 18th!”
“It was a beautiful,
sunny day for golf, as 109 golfers, and many more additional supporters
got together to fondly remember Megan, share in great barbecue and
refreshments, and raise much needed funds for Thyroid Cancer Research!"
Big John generously
donated the food and refreshments, ensuring that all net proceeds
go to our cause. He plans to continue this tribute event, and we will
continue to announce it and honor Megan on our web site.
Megan was one
of the first contributors to ThyCa’s web site, sharing many of her
creative poems and songs in our web site’s Humor section. She also
helped with ThyCa’s outreach programs and our conferences, and organized
several fundraising golf tournaments as part of her many wonderful
contributions to ThyCa.
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What’s
New on the Web Site?
Our award-winning
web site received more than 320,000 hits in May.
Every week, and
sometimes more often, our web site adds pages and free resources for
survivors, caregivers, professionals, and the public. Some of the
recent additions:
- Lotsa Helping
Hands, a free online care coordination service
- Conference
Updates: speakers, hotel reservation, and transportation details
- The latest
edition of ThyCa News Notes
- Research Advocacy:
ThyCa and the 2008 AACR Scientist-Survivor Program (complete article)
Coming soon:
- Low-Iodine
Recipes in French
- More materials
in Spanish
- Information
about RAI and the chance of secondary cancers
- More Conference
news
Thank you to Webmistress
Betty Solbjor of Massachusetts, Webmaster Joel Amromin of California,
the members of ThyCa’s Publications Committee, and the more than 50
thyroid cancer experts who give review and input to the web site.
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Creative
Awareness in North Carolina
In early June,
Jennifer Bureau organized a highly successful Thyroid Cancer Awareness
Display at the Wachovia Health Fair in Charlotte, North Carolina.
Jennifer had signs and lots of ThyCa provided materials for the Wachovia
employees, raising awareness for early detection and prompt treatment.
Taking part at
the health fair was Karen Ferguson, ThyCa Co-Founder and coordinator
of our Toll-Free Number volunteers. Karen writes,
“The health fair
was grand. Wachovia was as huge as Jennifer promised. It is an indoor
city. It has everything on site except living quarters. The facility
even has several doctors offices, including specialists. I have no
idea how many folks visited our booth. Jennifer deserves thanks and
recognition for putting it together. She plans to do it next year
too.”
Thank you, Jennifer
and Karen!
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A
Story from Kayce
(Editor’s Note:
Hearing that word “Cancer” and knowing it is you that is being associated
with it can be scary. You don’t even think about your thyroid that
much and then someone tells you that you have thyroid cancer and you
didn’t even know your thyroid could get cancer and that can be very
disturbing. Some of “US” can still keep our sense of humor through
it all and ThyCa has received humorous creative works from patients
and caregivers alike and enjoys sharing them with you.)
Here is one such
story thanks to Kayce:
I found out that
I had thyroid cancer when pregnant with my second child and went in
for my first baby’s appointment. The doctor felt my throat and said,
“What’s this on your thyroid?” I thought to myself (“to myself” of
course, since this is probably the stupidest thing you will ever hear,
I didn’t DARE say it out loud!)…Thy-roid…there’s nothing’ wrong with
my Thighs!”
Like I said, I
didn’t dare say this out loud as I knew that it was extremely silly!
So to break the ice with people, this is what I told them so they
didn’t feel awkward and feel like they had to apologize for me having
cancer…it’s a tough thing to tell people and a scary word for most.
So, I just decided
if it’s extremely uncomfortable for people to talk about I just whip
that story out and get a good laugh!
People need to
know you can have humor about serious things such as this so they
know you will be okay mentally, emotionally and most importantly physically.
This will help your loved ones help you out in the times when you
don’t feel much humor.
(Editor’s note:
By the way, we’re always interested in different ways that people
cope, and we invite you to share your poem, story, etc. by e-mailing
to publications@thyca.org
or mailing them to ThyCa, Attn: Coping with Thyroid Cancer, P.O. Box
1102, Olney, MD 20830-1102. Help give other ThyCans a little humor,
and thanks! )
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Low-Iodine
Tips and Recipes of the Month
From Melissa L. of Pennsylvania
For children and
teens coping with thyroid cancer, Melissa L. of Pennsylvania generously
contributed tips on menus and snacks, as well as recipes, to the Pediatric
Thyroid Cancer Web Site.
Here are her suggestions
for meals that kids enjoy:
Breakfast
- Oatmeal
- Fresh Fruit
- Fruit Juice
Lunch
- Peanut Butter
& Jelly Sandwich
- Tortilla Chips
- Fruit Leather
- Juicy Juice
Dinner Menus
- Goulash and
Green Beans
- Hamburger and
French Fried Potatoes
- Chicken Breast
and Mashed Potatoes
- Beef Roast,
Carrots, Green Beans, and Mashed Potatoes
- Steak and Baked
Potato
- Spaghetti,
Tomato/Meat Sauce, and Green Beans
Kids' Snack Ideas
- Sorbets instead
of ice cream
- Italian Ice
- Popcorn popped
in canola oil and salted to taste
- Fresh fruit
- Fresh vegetables
- Unsalted peanuts
(add noniodized salt or non-sea salt to taste)
- Tortilla chips
- Fruit leather
- Fruit snacks
- Matzo crackers
with peanut butter
Melissa has shared
her recipes for many of these dishes on
http://www.thyca.org/pediatric/lid-kids.htm.
Thank you, Melissa!
Your tips and recipes 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 100 generous volunteers.
If you’d like
to contribute your favorite recipe or tip to the cookbook’s next edition,
send it to recipes@thyca.org.
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Coming
Events
- Each Month:
Meetings of Local Thyroid Cancer Support Groups.
More than 70 groups. Meetings are held in states coast to coast,
as well as Costa Rica and Philippines. Each group has its own web
page. These meetings are wonderful ways to talk with other survivors
and caregivers face to face. For meeting locations, times, and contacts,
visit our web site’s Local Support Groups
page.
- September
2008: Thyroid Cancer Awareness Month.
Sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc.
Find out how you can help raise awareness for early detection, and
connect others with ThyCa's free support services, resources, and
special events. Visit http://www.thyca.org/awareness.htm
- Friday, Saturday,
Sunday, October 17, 18, and 19, 2008: St. Louis, Missouri.
The 11th International Thyroid Cancer Survivors' Conference. Sponsored
by ThyCa: Thyroid Cancer Survivors' Association, Inc. Conference
location: Sheraton Westport Hotel, 191 Westport Plaza, St. Louis,
MO 63146. Learn from experts and share experiences with others coping
with thyroid cancer. More than 80 session choices: The latest research,
advances in treatment and follow-up, insurance and employment issues,
and coping skills for well-being. More than 50 speakers will include
leading physicians and other specialists. The hotel has arranged
special room rates for conference attendees for single, double,
triple, or quad rooms. Details and the registration form will be
added to the ThyCa web site at http://www.thyca.org/conferences.htm.
- Saturday, October
18, 2008 from 6 p.m. to 9 p.m.: St. Louis, Missouri.
ThyCa's 7th Annual Dinner/Auction to Support Research. Sponsored
by ThyCa: Thyroid Cancer Survivors' Association, Inc. To be held
in conjunction with the 11th International Thyroid Cancer Survivors'
Conference. At the Sheraton Westport Hotel, 191 Westport Plaza,
St. Louis, MO 63146. Details on the ThyCa web site at http://www.thyca.org/conferences.htm.
For Calendar updates,
visit: http://www.thyca.org/calendar.htm.
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Every
Day….thousands of people receive help and hope from ThyCa.
What ThyCa Can
Do For You:
- Give free information
and numerous downloadable publications on thyroid cancer
- Offer support
via the Internet, local support group meetings, and person-to-person
contacts
- Supply materials
on thyroid cancer that you can't find elsewhere
- Offer you an
annual conference and regional workshops where you can meet other
survivors, get answers to your questions about thyroid cancer, treatments,
medications, and more, from doctors who are approachable and experts
in thyroid cancer
- Make available
to you, via the internet, printable flyers, articles, and newsletters
that give the latest information on thyroid cancer
- Have people
available who have been through this disease and are very willing
to share their experiences and help you out
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Get
Involved— Five Ways You Can Help
- Tell others
about www.thyca.org and our toll-free
survivors’ line 1-877-588-7904
- Raise Awareness
of Thyroid Cancer—Get Free Materials
- Volunteer:
We’ll help you find an activity to match your time and talents.
- Become
a ThyCa Member: Our thanks to all our one-year members, two-year
members, and lifetime members.
- Donate:
Donate by mail or online, or give a tribute gift in honor of someone
special.
Special Thanks
to the hundreds of wonderful volunteers who help ThyCa throughout
the year. You are bringing help and hope to people worldwide by raising
awareness, and sustaining and extending our outreach, support services,
and special events, as well as fundraising to strengthen our services
and support for thyroid cancer research for cures for all thyroid
cancer.
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ThyCa NEWS NOTES
Copyright (c) 2008 ThyCa: Thyroid Cancer Survivors' Association, Inc.
Thank you to Pat
Palliard, Editor, as well as Joel Amromin, Gary Bloom, Kayce K., Melissa
L., and Cherry Wunderlich, for writing, editing, and proofreading
this newsletter.
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 www.thyca.org/newsletters.htm.
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 www.thyca.org.
