ThyCa NEWS NOTES - November 2010
11/2010Contents
- Progress Reported on New Drug Application for Vandetanib
- Safety Procedures After RAI Focus of ThyCa and NRC Meetings, Congressional Questionnaire, and News Media
- New Global Shortage of Thyrogen® Through Mid-November
- ThyCa Now on Twitter
- Annual Conference a Big Success
- Thyroid Hormone Suppression Therapy: Conference Session Notes
- Praise for New Video/DVD for Thyroid Cancer Patients Preparing To Receive RAI
- Awareness Campaigns Continue Following Record-Setting Thyroid Cancer Awareness Month
- Dinner/Auction Raises More Than $38,000 for Thyroid Cancer Research
- Volunteer Raises Awareness of Neck Checks at Cancer Screening Day
- ThyCa Exhibits at Physicians’ CEU Meeting of The Endocrine Society
- From the E-Mail Inbox
- Our Free Guestbook
- Have You Visited Our Web Site Lately?
- Low-Iodine Recipe of the Month
- Serving People in 55 Countries
- Follow ThyCa on Facebook
- You’re Invited To Become a Member
- Every Day
- About ThyCa News Notes
Progress Reported on New Drug Application for Vandetanib
On December 2, 2010, AstraZeneca is presenting Vandetanib to the U.S Food and Drug Administration (FDA) for its New Drug Application. This is very exciting, as Vandetanib is the first targeted therapy agent to be presented to the FDA in conjunction with Thyroid Cancer management. Previously, the European Medicines Agency (EMA) and the FDA both accepted earlier regulatory submissions for review of Vandetanib.
The FDA Oncologic Drugs Advisory Committee also notes that the FDA encourages participation from all public stakeholders in its decision-making processes. Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee. They may send submissions to the FDA contact person (see below) on or before November 16, 2010.
Those desiring to make formal oral presentations should notify the contact person and also, on or before November 8, 2010, submit a brief statement of the general nature of the evidence or arguments they wish to present, as well as the names and addresses of proposed participants, and an indication of the approximate time requested for their presentation.
Time for each presentation may be limited. If more ask to speak than can be reasonably accommodated during the scheduled open public hearing session, FDA may conduct a lottery to determine the speakers for the scheduled open public hearing session. By November 9, 2010, the FDA contact person will notify interested persons regarding their request to speak.
Contact Person:
Nicole Vesely
Center for Drug Evaluation and Research, Food and Drug Administration
10903 New Hampshire Avenue
Building 31, Room 2417
Silver Spring, MD 20993-0002
Telephone: 301-796-9001
Fax: 301-847-8533
Email: Nicole.vesely@fda.hhs.gov
If you’re interested in providing information for inclusion in a ThyCa presentation, either because you’re unable to attend, or are planning to attend, but are unable to present for personal reasons, please send your information to publications@thyca.org. We will collect your submission, and include it in a ThyCa presentation.
Safety Procedures After RAI Focus of ThyCa and NRC Meetings, Congressional Questionnaire, and News Media
Stay in the hospital, or go home immediately, or go to a hotel after receiving radioactive iodine — this topic received widespread attention during October, including
- A session plus informal discussions on October 15 at the International Thyroid Cancer Survivors’ Conference. The session featured a discussion among Peter Crane, Esq., ThyCa Volunteer, Jim Luehman, Deputy Director Division of Materials Safety and State Agreements, U.S. Nuclear Regulatory Commission, and the thyroid cancer survivors and caregivers attending the session. The topic was “Issues in Preparing for a Radioactive Iodine (RAI) Scan or Treatment: Inpatient or Outpatient, Ensuring the Safety of Family Members and Others, Handling the Post-treatment Phase at Home, and Dealing With Insurance Issues.”
- A questionnaire developed by a U.S. Congressional committee, posted on ThyCa’s web site, received more than 1,000 responses in a week’s time, included in Congressman Markey’s subsequent report.
- A U.S. Nuclear Regulatory Commission (NRC) public meeting on October 20, in which, at the invitation of the NRC, ThyCa Executive Director Gary Bloom presented ThyCa information and perspective in a slide show and oral presentation, to be posted on ThyCa’s web site.
- A joint statement on October 20th on Radioactive Precautions Following Radioactive Iodine Therapy, from the American Thyroid Association (ATA), The Endocrine Society (TES), Society of Nuclear Medicine (SNM),and American Association of Clinical Endocrinologists (AACE).
- An article in the New York Times focusing on NRC policies and hospital procedures and featuring ThyCa volunteer Ann Maddox of North Carolina and her story of going to a hotel after receiving RAI.
- Other media coverage and discussions among medical professionals and patients in ThyCa support groups.
We will add links to this information to www.thyca.org as well as more information as it becomes available.
New Global Shortage of Thyrogen® Through Mid-November
In late October it was announced to ThyCa by the American Thyroid Association (ATA, www.thyroid.org) that Genzyme Corporation (Cambridge, MA), currently under a consent decree with the U.S. Food and Drug Administration (FDA) regarding manufacturing issues of several products including Thyrogen®, is experiencing a new delay in its product release.
This delay will affect the supply of Thyrogen® both in the U.S. and globally such that it is unlikely that Thyrogen® will be available for use starting immediately. Health care providers and patients should therefore plan accordingly. The duration of the shortage is uncertain; however, the current best estimate is that it will last through mid-November. The American Thyroid Association recommended that it may be advisable to not schedule use of Thyrogen® until product is confirmed to be available through the professional's normal method of obtaining Thyrogen®. Additional information will be provided as it becomes available.
ThyCa is now on Twitter, at ThyCaInc. Soon ThyCa’s home page will have a link to Twitter. Thank you very much to Mary Catherine Peterman, Outreach Volunteer, for coordinating this new outreach pathway for ThyCa.
Annual Conference a Big Success
The 13th Annual Thyroid Cancer Survivors’ Conference topped all previous conferences in its reach, with people coming from 40 states, DC, Canada, Hong Kong, and United Kingdom, including thyroid cancer survivors from children to seniors and every age group in between, plus caregivers and friends.
The three days featured more than 100 informative and supportive sessions. More than 50 sessions focused on the latest research and treatment advances. Speakers included 37 distinguished medical professionals from leading centers and the numerous specialties involved in thyroid cancer. Nurses attending received continuing education credits, offered for the 4th year in a row at the conference.
We were also honored to receive the expertise of 3 attorneys, plus numerous specialists in coping skills and complementary approaches, as well as roundtables with survivors and caregivers affected by every type of thyroid cancer—papillary, follicular, medullary, anaplastic, and variants.
Wow! What a Great Conference!
By Pat Paillard
ThyCa did it again!
New people remarked that they were "taken under the wing" of those who have been there before and felt very welcomed.
Those who had attended previous conferences were happy to see their extended family again.
Everyone complimented the speakers and the opportunities to learn in depth from such a varied group of dedicated experts from so many specialties and outstanding thyroid cancer treatment and research centers.
The sessions helped make us informed patients by having so many knowledgeable, patient, and friendly physicians plus other medical specialists. All gave us greater insights into all aspects of thyroid cancer and all topics related to it. You can learn something new every year at the International Thyroid Cancer Survivors’ Conference.
We also enjoyed the tasty food. And to top it all off, on Saturday night we had a live band and dancing until midnight, open to everyone free of charge! What a special treat!
All of the fun, caring, sharing and knowledge also helped to support thyroid cancer research! So, thirteen was a very lucky number for all of us and for ThyCa. It was only unlucky if you missed this conference. However, we have notes and handouts from sessions and are working to add them to www.thyca.org, so everyone will have access to them.
Let's do it all again next year in Los Angeles!
Thyroid Hormone Suppression Therapy: Conference Session Notes
Notes from Conference Session 331, Joshua Klopper, M.D., Endocrinologist, University of Colorado School of Medicine
- Generic versus brand name? Branded (consistent) therapy is important for thyroid cancer management.
- Initial thyroid hormone suppression in patients with differentiated thyroid cancer (papillary, follicular, and their variants). American Thyroid Association Guidelines Recommendation 40. The guidelines recommend initial TSH suppression to below 0.1 mU/L for high-risk and intermediate-risk patients, and between 0.1 and 0.5 MU/L (at or slightly below the lower limit of normal) for low risk patients, including those who have not had remnant ablation with radioactive iodine.
- Long-term TSH goals in ATA Guidelines Recommendation 49 are below 0.1 mU/L indefinitely for patients with persistent disease unless there are specific contraindications. For patients free of disease clinically and biochemically, but who started with high-risk disease, the suggested goal is 0.1 – 0.5 mU/L for 5-10 years. For those free of disease, especially those at low risk of recurrence and those who did not have remnant ablation and have undetectable Thyroglobulin and normal neck ultrasound, the recommendation is to keep the TSH within the low normal range (0.3 – 2 mU/L).
- Data gaps exist regarding what the goals should be for TSH for aggressive presentations of Stage I and Stage II disease.
Dr. Klopper also gave a helpful overview of research regarding TSH suppression and the bones and heart. ThyCa plans to add further information from this and other conference sessions to the web site and in future newsletters.
Praise for New Video/DVD for Thyroid Cancer Patients Preparing To Receive RAI
At this year's conference we were given the privilege of the premiere showing of "Thyroid Cancer's Magic Bullet: The Prep, The Pill, The Post.” This new video/DVD is a 62-minute documentary by Nick Isenberg, who is a filmmaker and thyroid cancer survivor.
This film takes you on the journey with physicians’ visits and discussions about thyroid cancer care and radioactive iodine, preparing to receive RAI, the Radioactive Iodine treatment, and procedures after receiving the "dose." It lets patients and caregivers see, hear, and understand what to expect and how to prepare, giving the perspectives of patients, physicians, and other professionals as it tells the story. Conference attendees praised the film highly. For more information about the video/DVD and its availability, read the article in the October News Notes or visit nickisenberg.com.
Awareness Campaigns Continue Following Record-Setting Thyroid Cancer Awareness Month
This year’s Worldwide Thyroid Cancer Awareness Month set new records of participation and outreach. Thank you very much to everyone who helped support the crucial goals of:
- early detection for all,
- treatment according to expert guidelines,
- lifelong monitoring,
- connections to free support services and education, and
- research for cures for all thyroid cancer.
Thank you also to all the individual volunteers and collaborating organizations who both took part in Thyroid Cancer Awareness Month and are continuing to raise awareness as part of the year-round awareness campaigns.
Dinner/Auction Raises More Than $38,000 for Thyroid Cancer Research
The 9th Annual Dinner/Auction Fundraiser was a big success, raising more than $38,000 for thyroid cancer research. Many thanks to our wonderful supporters through your donations of auction items, your bids on these items, and your help with planning and running this wonderful event.
Special thanks to Trish Allen of Texas, Anaplastic thyroid cancer survivor, and Phil Doetch of California, who created the Million Steps for Bob campaign in memory of his friend Bob Dubcich, for your inspiring talks and appeal for more thyroid cancer research. Thank you also to the attendees, including one medical professional, who responded to the spontaneous Somersaults Challenge ($200 donated for research for each somersault up to 10) and in just a few minutes raised more than $2,000 for research.
This wonderful support helps ThyCa continue to fund thyroid cancer research—now 8 straight years, 14 different grants (some 1 year, and some 2-year grants), and totaling more than $650,000. ThyCa plans to award more new research grants in 2011.
Volunteer Raises Awareness of Neck Checks at Cancer Screening Day
Gloria Keller, 46-year survivor of thyroid cancer, handled ThyCa’s exhibit table at the Cancer Education and Screening Day at Holy Cross Hospital in Silver Spring, Maryland, on October 2nd. She gave out AACE Neck Check cards, Fine Needle Aspiration Booklets in English and Spanish by Yolanda Oertel, M.D., ThyCa Medical Advisor, Awareness Brochures with Catherine Bell, and other materials. During the day hundreds of attendees learn about thyroid cancer and the importance of neck checks. Thank you, Gloria, for being a ThyCa volunteer for the past 10 years.
ThyCa Exhibits at Physicians’ CEU Meeting of The Endocrine Society
The Endocrine Society’s CEU Meeting for Physicians in Los Angeles, California, included a ThyCa exhibit. Joel Amromin and Art Connolly of the ThyCa Los Angeles Support Group handed out materials and answered physicians’ questions about ThyCa’s free services and resources for patients, caregivers, professionals, and the public.
From Tennessee… “My 11 year old daughter was diagnosed with thyroid cancer…I would like it if you could send a backpack to her. Your website has been very helpful to us in the last few months.”
From Nevada… “Our cancer institute is running low in our Library on copies of: ”One of the many faces of Thyroid Cancer” with Catherine Bell on the cover. Can you please send 20-30 more to replenish our shelves? Thank you very much.”
From New Jersey… “I was just diagnosed with Thyroid Cancer in August and had surgery in October. My Thyroid, one parathyroid and 45 lymph nodes were removed... If you can send me any information for myself as well as my children that would be great. Thank you for this very informative website.”
From Missouri… “I am a nurse at the County Health Department. Each month we do a short presentation about a different health topic at the four senior centers in our county. In January, I chose "Thyroid Awareness" as our topic. I was wondering if you had any materials available to give to the clients. We usually have around 120 people (total for the four senior centers). Thanks so much!”
From Pennsylvania… “I recently requested some pamphlets to distribute information regarding thyroid cancer to my co-workers at my school. I have received the neck check cards and I truly appreciate you sending them to me. They are a great source of information, and so I was wondering if I could have more to distribute to the faculty at both schools that I work in. My daughter was diagnosed with thyroid cancer this summer and I would really like to make my co-workers aware of the incidence of thyroid cancer and thyroid conditions so that they will be more vigilant in being checked by their physicians and checking themselves. I would need about 140 more cards.”
From a California thyroid cancer survivor after attending the conference …. “a HUGE THANK YOU for an incredible weekend. This was my first conference (my papillary diagnosis and surgery was earlier this year) -- and I am so so so grateful for the experience I had this past weekend. I like to think that I am a pretty active patient in all aspects of my medical care - certainly as it relates to my history of Hashimoto’s and most recently my cancer diagnosis — and by most standards, I am that active and self-educated patient. But I learned SO MUCH this weekend — and I am so happy I made the decision to attend. I am so thankful to all the volunteers and ThyCa organization leaders for making this possible and to the doctors and medical professionals and experts that gave their time to help us patients seeking support and knowledge in managing our disease. I am truly overwhelmed by the overwhelming generosity of the medical professionals that contributed this weekend — it is inspiring to know that there are indeed M.D.s out there that are so committed to engaging us in this way. …Many many many thanks. I am so encouraged and feel really empowered in going forward in managing the next steps of my recovery.”
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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 never sells or gives away any contact information.
Have You Visited Our Web Site Lately?
We’re excited to report that the www.thyca.org web site receives more than 350,000 visits per month —more than 10,000 each day. And, during each of the last 3 months, it has received more than 400,000 visits each day.
Almost every day our volunteer webmasters make new additions or updates. A great place to start reading is the Newly Diagnosed section.
Here, you’ll find lots of topics to choose from. You’ll learn the basics about each type of thyroid cancer, with details about diagnosis, treatment, and follow-up, and links to further guidelines and resources.
On www.thyca.org, more than 650 web pages provide extensive information about all types of thyroid cancer, connections to a broad range of free support services and events, and details about awareness campaigns, as well as fundraising for thyroid cancer research.
Free downloadable publications include the Free Low-Iodine Cookbook in English, Spanish, and French, plus dozens of other publications. A Chinese language translation is also in progress.
Thank you very much to the more than 50 thyroid cancer specialists who provide their input and expertise, to Betty Solbjor and Joel Amromin, our webmasters, and to the many dozens of volunteers on ThyCa's Publications and Web Site Teams.
Low-Iodine Recipe of the MonthContributed by Cathy Bernardi
Harvest Rice Stuffing
INGREDIENTS
1/2 Cup Basmati rice
1 pack of Herb Ox no sodium beef broth (or one cup of liquid beef broth if not on LID)
1 Cup of water (eliminate if using the liquid beef broth)
olive oil, enough to coat the cooking pans
3-4 cloves of garlic, chopped
1 small onion, chopped
2 stalks of celery, chopped
1 small carrot, chopped
3-4 button mushrooms, chopped, approximately 1/3 Cup chopped
1 small apple, chopped – I suggest one that is more sweet than tart.
1 teaspoon non-iodized salt, or to taste (Salt may need to be adjusted as needed, especially if using broth containing sodium)
black pepper, to taste
1 teaspoon ground sage
1/2 teaspoons poultry seasoning
1-2 Tablespoons no-salt Italian Seasoning, adjust to taste (check the label, most brands do not contain salt)
pinch of cinnamon
1/4 Cup dried cranberries
1/4 Cup raisins
1/4 Cup chopped toasted pecans, not salted
DIRECTIONS
Chop the following ingredients and set aside in a large bowl: garlic, onion, celery, carrot, mushrooms, and apple.
Heat oil in a small saucepan. Add rice and a pinch of salt and sauté over medium-high heat until rice starts to turn a light golden brown. While rice is sautéing add no sodium beef broth to 1 cup of hot water, stir to dissolve (skip this step if using liquid broth).
Once rice is golden mix the broth into the pan and bring back to a simmer. Cover and simmer on medium-low heat for approximately 15 minutes, until rice is tender and broth is absorbed.
While rice is cooking, heat oil in a large sauté pan over medium heat and add the chopped garlic, onions, celery, carrot, mushrooms, and apple. Sauté ingredients for a couple of minutes until the vegetables and apple start to tenderize. To the sauté pan add salt, black pepper, sage, poultry seasoning, Italian seasoning and cinnamon.
Continue to cook until vegetables are tender. Remove from heat. Once the rice is cooked stir the vegetable mixture in to the rice, then add the dried cranberries, raisins, and chopped pecans. Enjoy!
Serving suggestions:
Cool stuffing mix, mix with ground beef and/or ground pork, and stuff Acorn Squash. Bake in the oven at 425 degrees for approximately 45 minutes or until squash is tender and beef cooked through. I par-bake my squash first for approximately 20-25 minutes so they get really tender.
This would make a great stuffing for Thanksgiving turkey, whole baked chicken, stuffed baked chicken breasts, pork chops or pork loin, or pork roast.
Makes approximately 4-5 cups of stuffing,
Cathy writes, “My husband and I recently took a day trip to Apple Hill in Placerville, California, to celebrate our anniversary. While there we purchased an Acorn Squash at one of the farms. Not knowing exactly how I wanted to prepare the squash, but knowing we wanted it for dinner last night, I came up with this stuffing recipe. Seasonings may need to be adjusted a bit to your taste preference. I tend to cook often without measuring, so all seasoning measurements are approximate.
“This makes about enough to stuff a small turkey, two chickens, or two large Acorn Squash halves, more if you mix ground meat in with the stuffing mix. This recipe fits the guidelines for a thyroid cancer patient’s low-iodine diet when using the original ingredients as suggested. For those individuals not needing to watch the iodine in their diet you can use the ingredients in the parentheses.
“It is an original recipe that I created, as I am currently on a low iodine diet preparing for my thyroid cancer radiation treatment this week. It is a delicious recipe for the fall and winter. I think it may be especially helpful to any dieters who are faced with being on the low-iodine diet during the Thanksgiving or winter holidays. In my opinion the taste and smell of this dish just says, "holiday!"
“I cannot tell you how much I appreciate having your cookbook available to me….Your cookbook has saved my sanity and helped me to not feel deprived of good, tasty foods during this time.”
Thank you, Cathy, for contributing your recipe. We will include it in the next edition of the ThyCa FREE Downloadable Low-Iodine Cookbook.
Free and Downloadable
Download the new expanded 7th edition of the Low-Iodine Cookbook in English for free, with more than 340 favorite recipes from more than 150 generous volunteers.
The Cookbook is also available in Spanish and French. Please remember, while you’re welcome to download and print the entire free low-iodine cookbook, you can also print just the pages you need.
This free cookbook is a wonderful help when you’re preparing to receive radioactive iodine for treatment or testing. All the recipes are favorites of some of our ThyCa volunteers, who are sharing them with everyone, to make the low-iodine diet easy and tasty. The recipes are also great for family meals and for potlucks, any time.
If you’d like to contribute your favorite recipe or tip, send it to recipes@thyca.org.
Serving People in 55 Countries
ThyCa is proud to report that our services currently are reaching people in 55 countries around the world. Thank you to everyone who is helping to connect people worldwide with ThyCa’s free education, support services, and special events.
ThyCa: Thyroid Cancer Survivors’ Association, Inc. is now on Facebook (Group Name: THYCA).
Thank you to everyone who’s already become a THYCA Friend or Fan! Send us your messages and suggestions!
Help Support the 2010 Rally for Research
Thanks to generous contributions and special fundraising events, ThyCa has awarded new thyroid cancer research grants every year starting in 2003. These grants support our goal of cures for all thyroid cancer and a future free of thyroid cancer. We plan to award new research grants in 2011.
You can help support the Rally for Research. For details about the Rally for Research, donation opportunities, special events, Quarters for a Cure, and information about ThyCa’s past and future Research Grants, visit the Rally for Research page.
You’re Invited To Become a Member
Help us sustain, strengthen, and extend our services. We invite you to join ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Your membership dues will support ThyCa's efforts to reach and serve other survivors and their families around the world. Members receive our quarterly Membership Messenger newsletter.
You may join as a 1-year member ($25), 2-year member ($45), or lifetime member ($225). For our secure online Membership Form and our mailed Membership Form, click here.
Every day, thousands of people with thyroid cancer, and their families, receive support, education, and hope from ThyCa: Thyroid Cancer Survivors' Association, Inc.
Every day, numerous people distribute ThyCa outreach materials to their physicians, making them aware of a resource that can benefit their patients dealing with a thyroid cancer diagnosis.
Your generous support is what makes it possible to sustain, strengthen, and expand our services and outreach.
It only takes a minute to make a secure donation online in support of ThyCa's work (or you are welcome to donate by mail to ThyCa, P.O. Box 1102, Olney, MD 20830-1102).
Copyright (c) 2010 ThyCa: Thyroid Cancer Survivors' Association, Inc.
Thank you to our writing, editing, and proofreading team for this issue: Cathy Bernardi, Leah Guljord, Pat Paillard, Barbara Statas, 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 ThyCa News Notes with your family and friends. For permission to reprint in another electronic or print publication, please contact us at publications@thyca.org.
ThyCa: Thyroid Cancer Survivors' Association, Inc. is a national non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals.
We are dedicated to support, education, and communication for thyroid cancer survivors, their families, and friends, as well as to public awareness for early detection, treatment, and lifetime health monitoring, and to thyroid cancer research fundraising and research grants.
Contact us for free awareness materials and information about our free services and special events. E-mail thyca@thyca.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.