ThyCa NEWS NOTES – December 2012
In This Issue:
- FDA Approves COMETRIQ™ To Treat Medullary Thyroid Cancer
- Proposals Due by January 31, 2013, for ThyCa’s 3 New Thyroid Cancer Research Grants
- Raising Awareness in Oregon
- ThyCa Again Accepted into the Combined Federal Campaign
- Free My Butterfly
- Stay Connected and Informed
- Free Newsletters and Guestbook
- Every Day: Free Webinars
- Webinar Library Adds New Webinar with Erik K. Alexander, M.D.
- Thank You and Invitation
- Follow Us on Facebook and Twitter
- Low-Iodine Recipe of the Month
- Are You a Member?
- Every Day
- About ThyCa NEWS NOTES and ThyCa
On November 29, 2012, the U.S. Food and Drug Administration approved Cometriq (cabozantinib), earlier known as XL184) to treat medullary thyroid cancer that has spread to other parts of the body. Cometriq received orphan-product designation by the FDA because it is intended to treat a rare disease or condition. This drug is marketed by Exelixis.
Cometriq is a kinase inhibitor that blocks abnormal kinase proteins involved in the development and growth of medullary cancer cells. This the second drug to be approved by the FDA for the treatment of metastatic medullary thyroid cancer (the other is Caprelsa). We’ve added more information about Cometriq here.
We are proud to announce the 11th year of our research grants program, with grants open to young researchers and institutions worldwide. An expert panel of the American Thyroid Association reviews proposals and selects the grant recipients.
We are grateful to all of our generous donors who make these grants possible. Donations to date in support of research range from $1 to $10,000, whatever people can give. Thank you!
Together we accomplish far more than we can individually. Read more about the grants, and the Rally for Research, here.
We all share the dream of cures for all thyroid cancer. Thank you!
You guys sent me some materials a couple months ago for an upcoming health fair at my workplace, Wildhorse Resort and Casino in Pendleton. Oregon. I also printed off some more of your documents offered on line and cut up some of the brochures for a display.
I wanted to let you know that those materials were put to excellent use! On Tuesday November 27, 2012, we had our annual health fair and I talked to almost 200 people in 6 hours. We had water and hand-held mirrors available and I got most attendees to do a self neck check following the instructions on the AACE neck check card.
I raised awareness of how fast thyroid cancer is increasing and told everyone I talked to to ask for a neck check at their next doctor’s visit. A lot of people had never heard of thyroid cancer. I shared my story starting with my diagnosis 4 years ago with most people who stopped by and emphasized that early detection is key and thyroid cancer can be very treatable.
Thyroid cancer incidence is rather high in this region, so I am happy that I had a chance to raise awareness and reach so many people. Several people had a friend or family member who had had thyroid cancer and I encouraged them to take additional materials to pass along to make more people aware of your excellent web site and resources available.
Also, the Spanish version was very popular with several of our employees who speak English very well, but having the material in their native language made it even clearer and more appealing to read.
I hope to have a table at the health fair every year and our organizer is very enthusiastic about it. It was one of the more popular presentations. I am saving the display board for next year to put in front of our nurse’s office during the month of September. Thank you again for the materials!
ThyCa: Thyroid Cancer Survivor’s Association is once again accepted into the world’s largest workplace giving campaign (ThyCa’s CFC # is 11675). Federal civilian, postal, and military employees are able to choose ThyCa as a recipient of their workplace donations through the Combined Federal Campaign (CFC).. Thank you to everyone who contributes to ThyCa.
To all the people who helped me through these troubling months: my family, my friends, and, of course, my work family. I am truly blessed to have such amazing people in my life.
I’m 24 years old, a healthy 24-year-old, or so I thought. The months of August and September have come and gone. I’ll never get those months back. I never knew that my eyes could be opened to what truly matters in life until it happened.
The end of July came and I was already 3 months late for my regular ultrasound on my thyroid. I’d had nodules for a few years so I wasn’t worried about it. I also had a biopsy 4 years ago.
I couldn’t miss work for a doctor’s appointment, so I kept putting it off. I finally got the ultrasound scheduled for a Friday that I had off work. Friday came and I had my mom come with me to the appointment. I felt more comfortable having her there with me. The technician called my name and I greeted him with a smile along with a “how are you”.
We walked back to the room. I lay down, awaiting the gel that would be covering my neck. I relaxed as he pressed the probe in different places on my neck. After the last screen capture, I was all done. I wiped the gel off (but still managed to get it in my hair!) and left.
A week went by, so I was confident that nothing was wrong. I got a phone call from my doctor, saying that he wanted me to get a needle biopsy done at a pathology office. Because I’d had one a few years earlier, I didn’t think it would be something serious.
When I got to the pathology office my eyes studied the “bed” that I had to lie on. The doctor walked into the room, introducing herself. She asked me numerous questions about my health such as: hair loss, dry skin, fatigue, weight loss/weight gain. Then she asked me to lie down on the “bed.” She put some sort of numbing cream on my neck and the process began. I felt pressure in my neck as she pushed the needles into my skin. The monitor showed the size of the nodules. I glanced at it a few times.
After the procedure, she left the room, it seemed like she was gone for years. My gut told me something was wrong, that it shouldn’t take so long to look at results.
The doctor finally came back into the room with a serious look on her face. I was thinking, “oh, no, what could it be?”.
“A lot of the characteristics look like Papillary Cancer.”
I heard the word cancer and thoughts went racing through my mind. My mind was thinking about a million different things. Is the cancer serious? Am I going to die? How big is it? There’s no other feeling like it.
We left the pathology office. My neck was sore from the biopsy; I gently rubbed it, wondering what was going to happen to me. I could barely eat after the procedure, because I was nervous, but I acted like my normal self, smiling and happy. I couldn’t let myself be down and out about it.
My regular doctor followed up with me, telling me that surgery was a must. He made me an appointment with a surgeon; I heard great things about the surgeon.
I slept all the way to the appointment at the regional medical center. The office was on the second floor. The elevator ride seemed to last forever, maybe because I was thinking too much. I signed in and paid my doctor visit fee, which was another thought on my mind…money. The nurse called me back, getting all my physical stats.
My surgeon walked into the room, shook my hand, examined my neck, and discussed the surgery. He explained the procedure and how long I would be in surgery. My surgery date was a week later (the day after my brother’s birthday).
I became anxious as my surgery date got closer. I wondered how I’d feel after surgery and how well my body would handle it. The night before, I couldn’t sleep. I had to be at the hospital by 5:15 a.m. I tried sleeping on the way over, but that didn’t happen. I couldn’t sit still in the car. My mind kept thinking about that word “CANCER”.
I made my final update on Facebook before going into surgery: “Last update before surgery..love u all..keep ya’ll posted.”
I didn’t get to reply to anyone’s comments, because the hospital staff was quick to prepare me for surgery. My mom stayed with me for five minutes and then was asked to leave. Many different staff members asked questions. My IV was put in. The nurse put some medicine in my IV. “This will relax you”, she said.
Before I knew it, I was feeling drowsy, “I feel it,” I said. That was the last thing that I remember before surgery. The surgery took 3 hours. The staff updated my family on how I was doing and how much longer it would be.
I woke up and remember only two things. Two nurses were looking at my medical record and saying, “24?! You look like you’re 12!!” I giggled at that comment. I was rolled up to my room. I remember freaking out because my family wasn’t there, and the nurse assured me that they’d arrive shortly.
After the anesthesia wore off, my neck was sore. I became sick twice. I had nothing but liquids that day. The nurses gave me Tums to help my calcium levels. My dad told me that I had a small cancer and they got it all. At about 3 a.m., one of the doctors who helped perform the surgery came and talked with me.
My surgeon came and talked with me, looked at my incision, asked me how I felt, and explained what would happen after I was better. He made a follow-up appointment. I was released at 5 p.m. that day, I was excited. I couldn’t wait to get home. My body was exhausted, I slept a lot that day; actually, every day for a while.
My follow-up appointment went great. The doctor was impressed with how good my incision looked. He told me there were TWO tumors, not one. Wow! He then discussed the Radioactive Iodine, I thought to myself, “I’ve fought this hard thus far!” My appointment was in Kingsport.
I followed a low-iodine diet for two weeks for treatment. I was miserable that whole two weeks. I craved pizza the entire time. I did cheat one time on the diet; I ate a snack wrap.
My treatment day finally came, I swallowed a small pill. I rode home with my parents and after we got home, I couldn’t be around them. I had to stay in my room and away from them for a few days. I’m very close to my family, so it was difficult for me to be quarantined. I started feeling sick to my stomach later that day, so I slept. The next morning, I felt sick. I was in the bathroom and passed out. My brother came to the rescue; when I awoke, I couldn’t stand up. My brother picked me up. For me, the RAI was more difficult than the surgery.
I started my thyroid medicine. I take it every day at the same time, at 5:30 a.m. My body scan came back clean. I was able to return to work in late October. It felt as though centuries had gone by before then. I returned to work with my head held high, knowing I had beaten cancer and remained positive.
The purpose of this story is to inspire anyone who is going through difficult times and of course to the awesome cancer patients out there. Be positive and keep fighting. Never let anything or anyone bring you down. You’re never alone in this world. There are others going through the same exact situation as you.
Special thanks to:
Missy V. for being so caring and having that dinner for me, you’re a blessing.
My family, I couldn’t have gotten through this cancer without you!
My friends, for the sweet comments and text messages
My awesome boss!
My Walmart family—you guys make my days brighter; how could I live without you?
ThyCa, for the wonderful information you provide
People in more than 96 countries are now receiving ThyCa’s free education, support services, and mailed materials. Our web site has information and downloadable materials in English, Chinese, French, Japanese, and Spanish.
We invite you to join our worldwide network. We want to help you stay connected and informed. And, with your help, we’ll be there for every person affected by thyroid cancer.
By signing up on ThyCa’s free Guestbook, you’ll receive the latest news about thyroid cancer, new free publications, events, and more.
If you haven’t already signed up, we invite you to sign up today.
Listen, and learn from experts, anywhere you are in the world. All 11 webinars, covering a variety of thyroid cancer topics, are available free.
For more events, visit the Calendar of Events.
You’re invited to watch/listen to the new Webinar, Understanding the Afirma Gene Expression Classifier in Testing Thyroid Nodules.
Erik K. Alexander, M.D., explains how this test helps reduce unnecessary thyroid surgeries, by determining whether a thyroid nodule is benign or cancerous if the result of the fine needle aspiration is indeterminate. Dr. Alexander is an endocrinologist at Dana Farber Cancer Institute and Brigham and Women’s Hospital, Boston, Massachusetts.
Dr. Alexander maintains the largest U.S. registry of consecutive thyroid nodules evaluated and aspirated via a multidisciplinary approach, with data from over 6,000 consecutive patients with clinically relevant thyroid nodules. Most recently, Dr. Alexander has led a national, multi-center study validating the Afirma gene expression classifier for thyroid nodule evaluation.
To watch/listen to this free presentation, from your own computer, wherever you live in the world, go t our Webinars page.
We are grateful that more than 450 dedicated volunteers helped this year, making possible all of these accomplishments, and many more.
With your help, we can do even more. We invite you to make ThyCa part of your holiday giving this season. We welcome donations by mail, or online.
Three Peanut Butters
Doctored-Up Natural PB:
Dump one jar natural Peanut Butter into your food processor, oil and all. Add 3/4 teaspoon noniodized salt (more or less to taste or depending on your dietary needs to avoid sodium). Add 2 tablespoons white sugar (more or less to taste, or depending on your dietary needs to avoid sugar). Or try using agave syrup if you like; use less, because it’s sweeter than sugar). You could substitute artificial sweetener here if you need to. Zap away with the food processor. It will blend so that the oil doesn’t separate, and the added salt and sugar will make it tasty. Pour it back into the jar. Grab your permanent marker, write Low-Iodine on the lid, and pop it into the fridge.
Follow the same directions as above, but instead of the white sugar, add three tablespoons of honey. Grab your permanent marker and write Honey Low-Iodine on the lid and pop it into the fridge.
Follow the same directions as the first Peanut Butter. Add add two heaping tablespoons of cocoa. Since cocoa is dry, you might want to add a teaspoon of canola oil. Increase your sugar a bit, since cocoa is not sweet. Blend away. This version will be darker than the others, so grab your marker and write Low-Iodine on the lid and put the jar into the fridge. You’ll know that it’s chocolate from the color!
Use these make a good old-fashioned Peanut Butter ands Jelly sandwich for lunch. Wrap it up and pack your lunch bag with a banana, an apple and your PB&J. Enjoy! Mix it up by changing around the types of jellies and jams. One day use the doctored up PB and another day try the honey PB. For a more decadent treat, try a chocolate PB and sliced banana sandwich!
Thank you, Daria, for contributing these recipes and many more. We will include them in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.
Free and Downloadable
Download the 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:
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.
To contribute your favorite recipe or tip, send it to email@example.com.
Help us sustain, strengthen, and extend our services. We invite you to become a member of ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Membership is open to everyone worldwide. You may become a 1-year ThyCa member ($25), 2-year member ($45), or lifetime member ($225).
Your membership dues will support ThyCa’s efforts to reach and serve other survivors and their families around the world. Members receive our Membership Messenger newsletter.
For our online Membership Form and our mailed Membership Form, go to our Membership 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, in the time you give and in financial contributions, makes it possible to sustain, strengthen, and expand our services and outreach.
It only takes a minute to volunteer your time by e-mailing to firstname.lastname@example.org or to make a donation online in support of ThyCa’s work (or you are welcome to donate by mail to ThyCa, P.O. Box 964, Chesterfield, MO 63006-0964), so click here to give.
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.
Your suggestions for articles are welcome. The deadline for articles and news items is the first day of each month.
Thank you to our writing, editing, and proofreading team for this issue: Leah Guljord, Caitlin Heath, Daria Jerauld, Tina Odierno, Pat Paillard, Barb Statas, Cherry Wunderlich, and Gary Bloom.
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 non-profit 501(c)(3) organization (tax ID #52-2169434) of thyroid cancer survivors, family members, and health care professionals. Contact us for free awareness materials and information about our free services and special events. E-mail to firstname.lastname@example.org toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visiri our website.