ThyCa NEWS NOTES – December 2010
- Proposals Due by January 31, 2011 for ThyCa’s 2011 Thyroid Cancer Research Grants, Open to Researchers Worldwide
- Thyrogen® Restrictions Ended
- Letters to the FDA Support Vandetanib
- ThyCa Participates at FDA Hearing on Vandetanib
- FDA Committee Recommends Approval of Vandetanib
- Treatments and Clinical Trials for Advanced Metastatic Differentiated Thyroid Cancer
- Surgery Survey Receives Over 5,000 Responses
- Introducing ThyCa’s Volunteer Coordinator
- ThyCa Again Accepted into Combined Federal Campaign (CFC)
- New Online Thyroid Cancer Support Community Opens on Inspire
- ThyCa Receives Grant from AstraZeneca
- Honoring Our Ten-Year Volunteers
- Free Patient Information Packets Go Around the World
- Bayer/Onyx Grant Received
- Have You Visited Our Web Site Lately?
- My Story
- Low-Iodine Recipe of the Month
- Follow ThyCa on Facebook and Twitter
- You’re Invited To Become a Member
- Support the Rally for Research
- Every Day
- About ThyCa News Notes
In 2011, for the 9th year in a row, ThyCa: Thyroid Cancer Survivors’ Association, Inc. will award new grants for thyroid cancer research.
ThyCa will award two new grants in 2011. 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 in 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 specializing in thyroid diseases.
The Call for Proposals and eligibility requirements will be available on the ATA web site (www.thyroid.org). The deadline for submission of a proposal summary to the ATA is January 31, 2011. 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.
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 has awarded its grants to researchers at the following institutions:
- Cochin Institut, Paris, France
- Harvard Medical School, Boston, Massachusetts
- Johns Hopkins University School of Medicine, Baltimore, Maryland
- Memorial Sloan-Kettering Cancer Center, New York, New York
- Ohio State University, Columbus, Ohio, and Medical University of Gdansk, Poland
- Rush-Presbyterian-St. Luke’s Medical Center, Chicago, Illinois
- University Hospital Basel, Basel, Switzerland
- University Hospital Duesseldorf, Duesseldorf, Germany
- University of California Los Angeles (UCLA)/Veterans Affairs West Los Angeles Health Care System, Los Angeles, California
- University of Illinois at Chicago.
- University of Texas M.D. Anderson Cancer Center, Houston, Texas
ThyCa has two Research Funds. One fund supports research of follicular-cell-derived thyroid cancer, including papillary, follicular, anaplastic, and variants. The other research fund supports research of medullary thyroid cancer.
Find out more about the ThyCa Research Funds and annual Rally for Research.
ThyCa invites everyone to join us in our quest to find better treatments, and a cure for all thyroid cancer.
Genzyme Corporation reported on November 24 that it no longer has restrictions on marketing and distributing Thyrogen® in the United States, after completing terms of the consent decree with the U.S. Food and Drug Administration. Genzyme has transferred all its Thyrogen® fill/finish operations for the US market into a facility with Hospira, a third-party company. As a result of this action, Genzyme is no longer required to include a letter of medical necessity with Thyrogen® shipments to distributors. Thyrogen® is a prescription recombinant TSH given to many patients with differentiated thyroid cancer when preparing for radioiodine treatment, radioiodine whole-body scan, Thyroglobulin testing, or other testing as part of their thyroid cancer management.
Vandetanib is the first-ever targeted therapy for thyroid cancer management to be presented to the U.S. Food and Drug Administration (FDA) for approval. Tested in the United States for Medullary Thyroid Cancer (MTC), vandetanib (Zactima) is also being tested in Europe for treating advanced differentiated thyroid cancer (papillary and follicular) that has not responded to radioactive iodine.
More than 500 thyroid cancer survivors, family members and friends wrote to the FDA, to ThyCa for its presentation, or to both, in response to the FDA’s invitation for public comment by November 16. Here are a few excerpts:
“I am a patient with Stage IV medullary thyroid cancer (MTC) with metastases in my neck, mediastinum, liver, and lungs. I understand that the only proven treatment for MTC is surgery and that no treatment currently exists for MTC that has spread to distant organs… I support the approval of Zactima (vandetanib) for first ever non-surgical treatment of MTC. With this approval, all MTC patients may have a drug available that can combat this disease.”
“I support the FDA approval of vandetanib because of the remarkable difference it has made in my dear friend’s quality of life. At one point she could barely talk for over 5 minutes before becoming out of breath. She weighed in at about 95 pounds and was very frail. It hurt to see this once vivacious woman, gaunt and in pain. Apparently this drug is a miracle because she is once again at a healthy weight and loving life with her family. I have seen the change with my own eyes and love what I see. Please consider this my plea for approval of this drug so that others may reap the benefits that she has had.”
From a parent:
“I am the mother of a special 17-year-old daughter who is battling with sporadic medullary thyroid cancer. She had an extensive surgery. There is currently no systemic cure for this disease. I support the approval of Zactima (vandetanib). I’m very scared for my daughter since her cancer had already spread even beyond the lymph nodes to where she had to have some nerves removed. …. She has some cancer on her trachea. She has a spot in the mediastinum area as well as in the deep right area of her neck that the surgeons say they can’t go to – and we have excellent doctors. I realize that this cancer doesn’t have the high numbers of some other cancers, but it is devastating still. Please help us have a treatment for our daughter with help of Zactima.”
From North Carolina:
“I have been living with medullary thyroid cancer since 1999. There is currently no systemic cure for this disease, only surgery. Over the past 5 years, research has begun to produce clinical trial drugs that are showing promise in treating medullary thyroid cancer. Not everyone who needs treatment qualifies, or has the ability to participate in a clinical trial. That is why the promise of a newly approved drug for medullary thyroid cancer patients is so exciting. More ’meddies‘ may have the ability to try a systemic treatment, and perhaps stabilize or reduce their cancer. I have been fortunate to meet a number of medullary survivors over the years, and I have known many people who died because there were no successful treatments available. For many others, side effects of medullary thyroid cancer, such as diarrhea or bone pain from metastases, limit their ability to function or work. Some rely on serious drugs to reduce their pain. I know several ‘meddies‘ who have participated/are participating in the vandetanib (Zactima) clinical trials. They have told me how the drug relieved their pain, lessened their requirement for narcotic drugs, allowed them to gain weight, and stabilized the progress of their disease. I know it’s not a perfect drug, and doesn’t work for all. But it has shown significant progress and it holds promise for many who are waiting. I support the approval of vandetanib for the first ever non-surgical treatment of medullary thyroid cancer. Thank you.”
From a patient:
“I have Medullary Thyroid cancer. I was diagnosed at a stage 3, and just this past year I have had side effects of my cancer show through with daily life, due to my high ’calcitonin’ numbers. I’m a mom of 3 children 14, 10, and 7. I need this drug approved for them, and my husband. My children need me; my husband needs me. My children are already too young to know about cancer, but that is the card we’ve all been dealt. If this approval of Zactima can save lives, and stop young children from losing their parents, please, please approve this drug. My children need me…”
From Ontario, Canada:
“When I was diagnosed with Medullary Thyroid Cancer (MTC), the only treatment was surgery. Unfortunately, surgery is not always a realistic treatment if the MTC has metastasized. Candidly, the low number of patients diagnosed with MTC does not make research and clinical trials into potential MTC drugs commercially viable. Notwithstanding these statistics, AstraZeneca has pursued the development of vandetanib over the last five or six years and has achieved remarkable results in terms of partial response and stable disease findings in the patients participating in the clinical trials. Other types of cancer respond to chemotherapy; however, chemotherapy has not been an effective MTC treatment. At last, there is the opportunity for an effective treatment other than surgery. I urge the approval of vandetanib as there may be precious few other opportunities for MTC patients.”
On December 2, 2010, AstraZeneca presented vandetanib to the U.S Food and Drug Administration (FDA), Oncologic Drugs Advisory Committee (ODAC) in advance of submitting vandetanib for its New Drug Application. This was very exciting, as vandetanib is the first targeted therapy agent to be presented to the FDA in conjunction with any type of Thyroid Cancer management. Previously, the European Medicines Agency (EMA) and the FDA both accepted earlier regulatory submissions for review of vandetanib. ThyCa: Thyroid Cancer Survivors’ Association, Inc. participated at the FDA hearing with both oral and written information in support of vandetanib. Gary Bloom, ThyCa Executive Director, gave ThyCa’s presentation. Four medullary thyroid cancer survivors also spoke movingly of their experiences.
The formal presentations provided detailed findings and analysis of the clinical trials of vandetanib, presented by Robert Gagel, M.D., of University of Texas M.D. Anderson Cancer Center, presenter at numerous ThyCa meetings, and ThyCa Medical Advisor, and Gilbert Daniels, M.D., of Massachusetts General Hospital, who also has spoken at many ThyCa events.
On December 2, the Oncologic Drugs Advisory Committee of the U.S. Food and Drug Administration unanimously supported vandetanib for medullary thyroid cancer patients with progressing disease. The FDA will make its official decision between now and January 7th. This is exciting news for all thyroid cancer patients, because FDA will be more aware of the need for targeted therapy drugs for all types of thyroid cancer.
Notes from Conference 2010
- 10-15% of patients developed advanced disease that is resistant to radioactive iodine (RAI).
- Because of research advances, “it’s a whole new world” in treating advanced disease.
- RAI-refractory disease means at least 1 lesion without RAI uptake, or else uptake but progression within 1 year following RAI treatment.
- Systemic therapies should be used in these situations, and others
- growth of tumors over the past 12 months despite RAI
- large metastases that may compromise organ function
- The patient needs to be healthy enough to undergo the treatment.
- What type of physician should manage treatment? Medical oncologists have the most experience in using targeted agents and managing side effects (toxicity). Success is not just access to a drug; help in managing toxicity is important. Find someone you trust; then do what they say.
- Treatment possibilities include (a) chemotherapy such as doxorubicin (the only FDA-approved drug for metastatic thyroid cancer), paclitaxel, and cisplatin, or targeted therapies such as Vandetanib (New Drug Application presented to the FDA on December 2, 2010), XL-184, Axtinib, Pazopanib, Sorafenib, Suntinib, and others.
- ATA Guidelines recommend maintaining TSH Suppression in patients with advanced differentiated thyroid cancer (serum TSH below 0.1 mU/L) indefinitely unless there are specific contraindications.
More than 5,000 people have responded to the Thyroid Surgery Survey posted on ThyCa’s web site. The survey goal is to understand surgery and the voice, to improve care and help prevent voice problems. The topic is “Patients’ Voices After Thyroid Cancer Surgery: Whether Voices Stay the Same, or Change, and How.” Research team leader is David Myssiorek, M.D., Otolaryngologist, New York University Clinical Cancer Center, New York, NY, and Medical Advisor to ThyCa: Thyroid Cancer Survivors’ Association, Inc.
The research team is studying the experiences of patients whose voices stayed the same after their surgery as well as the frequency and types of voice changes that were experienced.
Add your experience and increase knowledge about thyroid surgery.
The friendly e-mail or call you receive when you contact ThyCa about volunteering comes from Michael Dubrow, ThyCa Volunteer Coordinator. Michael contacts each new ThyCa volunteer to get acquainted, explore volunteering possibilities, and help the new volunteer find the best match for the volunteer’s talents and availability. Then, he introduces the new volunteer to the coordinator of the committee or program in which the volunteer plans to serve.
“The more you become involved with helping others, the more meaningful your life becomes,” Michael says.
Michael is also the facilitator of the ThyCa Central New Jersey Support Group, which meets each month at the Robert Wood Johnson Hospital in Hamilton, NJ. He is also a Person-To-Person Network volunteer, giving one-to-one peer support to others. At ThyCa conferences, he has led many roundtable discussions on numerous topics. Michael’s key strengths are that he’s a wonderful listener, and he wants to help people.
A graduate of Monmouth University, Michael was a staff member for Mercer County Board of Social Service for nearly 30 years, including serving as senior case manager in the intake department. Diagnosed with thyroid cancer in December 2005, he has been given the “all clear.” He and Linda have been married for 31 years, and they have two daughters, Beth and Rachel.
ThyCa has again been accepted into the world’s largest workplace giving campaign.
Federal civilian, postal, and military employees are able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC). This federal employees’ charitable giving campaign raises millions of dollars each year for thousands of nonprofits providing health and human services throughout the world.
This wonderful support helps ThyCa sustain and strengthen services and outreach and to fund thyroid cancer research.
You’re cordially invited to join our newest free online community—our collaboration with the Inspire online community.
This new thyroid cancer online community offers several benefits— choices of several discussion and support groups, plus the opportunity to create and share your individual online profile page, and more.
To find out more, and to become part of the thyroid cancer support community on Inspire, click here.
We are pleased to announce unrestricted educational grant funding to ThyCa from AstraZeneca in support of our operations, year-round educational services and outreach, and the annual International Thyroid Cancer Survivors’ Conference. We greatly appreciate this support.
More than 50 wonderful people have been ThyCa volunteers for 10 years or more. Some have volunteered for 15 years. In future newsletters, we will introduce these dedicated volunteers. We offer a special thank you to all ThyCa volunteers, both new and long-time. Together, we are making positive differences in the lives and well-being of others coping with thyroid cancer.
We mail free thyroid cancer information packets to people with thyroid cancer, and their caregivers, around the world. To receive the free packet, e-mail your name and complete mailing address to email@example.com. For more details, click here.
Thank you to Bayer/Onyx for the unrestricted educational grant to ThyCa in support of our education and outreach programs. We are most grateful for this funding to help sustain and strengthen our free services and resources for everyone affected by thyroid cancer.
Have You Visited Our Web Site Lately?
ThyCa’s web site www.thyca.org receives more than 350,000 visits per month — over 10,000 each day. Almost every day our volunteer webmasters make new additions or updates.
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.
Dozens of free downloadable publications include the Free Low-Iodine Cookbook in English, Spanish, and French. 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.
Excerpted from Sue’s Vandetanib Presentation to the U.S. Food and Drug Administration on December 2, 2010
My Medullary thyroid cancer symptoms started about 25 years ago…but I wasn’t diagnosed until 2003. When my husband and I told our 9-year-old daughter, we pointed out it is often a slow-growing disease. However, we both knew I’d had it for at least 20 years. In August, 2003, I had an 11-hour surgery performed by 2 surgeons, which included a total thyroidectomy.
Because of the cancer’s pervasiveness & as the pain increased, I felt I needed to do something. I tried targeted radioactive injections in Switzerland and another trial. Nothing helped and my health continued to deteriorate while the pain increased. My breathing became taxed as more tumors appeared in the pleura, spine and ribs. Finally, two lobes of my right lung collapsed. I had to start taking pain medication although I had an enormous fear of becoming addicted to pain meds.
By 2007, the pain was so severe that a pain pump was surgically implanted in my abdomen but complications with a spinal leak and replacement of the catheter further stressed my body. I weighed less than 90 pounds and I had to go to the emergency room a few times just for fluids. I was extremely lethargic and ready to give up. I knew I was running out of time and I felt that I might not be able to hold on another year.
Because of a ThyCa support group on Yahoo, I learned about “vandetanib”. It seemed to have wonderful effects for many who were on the trial. As soon as I was able, I entered the trial. When I enrolled, my weight was still below 90 pounds, my pain was very high and I was taking all kinds of pain medication. I had stopped driving and needed help getting around; needing wheelchair assistance in airports. I had many respiratory infections and had to have my lungs drained frequently.
Within just one month of being on VANDETANIB, my severe and newest pains had completely ceased. Within just a couple of months, I discontinued all of my oral pain medication and started reducing the dose in the pain pump. I continued having the medicine in the pain pump reduced until it now contains saline…I am completely off pain medications.
My tumors have shrunk and some have calcified and my lungs have not had to be drained in a very long time. My calcitonin has gone from between 58,000-60,000 to approximately 5,000. I am back in the gym exercising, I’ve watched my daughter turn 16 and enjoy watching her soccer games again. I’m even looking for a job! None of this would be possible if it had not been for the grace of God and vandetanib.
I wholeheartedly request the approval of vandetanib so that others may have another chance at life, like I have.
2 cups flour
1 cup whole wheat flour
1 1/2 teaspoons non-iodized salt
1 Tablespoon honey
2 teaspoons yeast (or 1 packet)
1 1/4 cup water, roughly at room temperature
2-3 Tablespoons olive oil
Mix the yeast in with the flour, non-iodized salt, and sugar in mixer bowl with paddle attachment. Add the olive oil and 1 1/4 cup water and mix until dough forms a ball. Remove the paddle attachment and replace it with the dough hook; knead the mix for 8 minutes. If you don’t have a heavy-duty mixer, this can be both mixed by hand and kneaded for 10 minutes.
Place the dough in a bowl that has been lightly coated with oil. Cover the dough with oil. Cover the bowl with plastic wrap or a damp kitchen towel and set it aside to rise until it has doubled in size, for approximately 90 minutes.
Punch the dough down and divide it into 8 pieces. Roll each piece into a ball, cover the balls with a damp kitchen towel, and let them rest for 20 minutes. On a floured surface, roll the balls out into 8 inch circles and ¼ inch in thickness.
Place a cookie sheet upside down in the oven and preheat the oven to 425 degrees F. Place circles (try dropping them “rise” side up versus “rolled” side up onto the hot cookie sheet, cooking two at a time. Bake until puffy, about 3-4 minutes.
These will not brown much (like the store-bought ones) but are delicious & a great bread option. If they don’t puff enough to split; use them like flatbread.
Makes 8 pitas.
Focaccia Variation: Use the same recipe and prepare through the first rise. Instead of dividing the dough, spread the dough on a lightly greased pan and brush with olive oil. You can sprinkle with rosemary or chopped garlic or onions. Cover and let the dough rise for 20 minutes. Preheat the oven to 425 degrees F and bake for 15 minutes or until lightly brown.
Thank you, Lily, for contributing your recipe. We will include your recipe and many others 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 volunteersf.
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 firstname.lastname@example.org.
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.
Membership is open to people worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225). For our online Membership Form and our mailed Membership Form, click here.
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.
You’re invited to 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.
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.
It only takes a minute to make a 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), so click here to give.
Thank you to our writing, editing, and proofreading team for this issue: Leah Guljord, Sue Hollingsworth, Pat Paillard, Barbara Statas, Lily W., Jo Walker, 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 email@example.com.
The information in this newsletter is intended for educational purposes only. It is not intended, nor should it be interpreted, as medical advice or directions of any kind. Readers are advised to consult their own medical doctor(s) for all matters involving their health and medical care.
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 firstname.lastname@example.org, call 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.
This site maintains current information about thyroid cancer and support services available to people at any stage of testing, treatment, or lifelong monitoring for thyroid cancer, as well as their caregivers. This site also serves as a resource for anyone interested in thyroid cancer survivors’ issues.
ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an all-volunteer, non-profit 501(c)(3) organization 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.