ThyCa News Notes - April 2015
07/2015- Lenvima Approved in Japan and Fast-Tracked in Europe
- New Guidelines for Pediatric Differentiated Thyroid Cancer and for Medullary Thyroid Cancer Issued by ATA
- Learning from the Outliers—the Exceptional Responders
- TSH Recommendations Change for Low-Risk Patients with Differentiated Thyroid Cancer
- In Memory of Rob Bohning
- Thank You, Donna
- A Support Group Mascot
- Letter from Australia: Rachael’s Story
- Experts To Present Free Seminars in Numerous States and Online
- My Story by Jill of Ontario, Canada
- Early-Bird Registration Now Open for the Conference!
- ThyCa’s 20th Anniversary—You’re Invited To Help
- My Story by Isabella of California
- Jennifer Begins a New Hike on the Continental Divide
- Low-Iodine Recipe of the Month - Slow Cooker Latin Chicken
- Follow Us
- Your Donations Make a Difference
- About this Newsletter and ThyCa
LenvimaTM Approved in Japan and Fast-Tracked in Europe
LenvimaTM (lenvatinibmesylate) has been approved in Japan to treat patients with progressive, differentiated thyroid cancer (DTC, including papillary, follicular, and variants) whose disease progressed despite receiving radioactive iodine therapy(radioactive iodine refractory disease).
In addition, the European Medicines Agency (EMA) is recommending that LenvimaTM be available across Europe for the treatment of some patients with thyroid cancer, following a fast-track assessment.
Previously, the U.S. FDA approved LenvimaTM for use in the United States. Click here for more details.
LenvimaTM is a kinase inhibitor, which works by blocking certain proteins from helping cancer cells grow and divide. LenvimaTM is marketed by Eisai Inc.
New Guidelines for Pediatric Differentiated Thyroid Cancer and for Medullary Thyroid Cancer Issued by ATA
The American Thyroid Association (ATA) has issued two new sets of physician guidelines. One is for the management of Thyroid Nodules and Pediatric Differentiated Thyroid Cancer. The other is the ATA’s updated guidelines for Medullary Thyroid Cancer.
Gary L. Francis, M.D., Ph.D., chaired the pediatric guidelines task force. Steven G. Waguespack, M.D., and Andrew J. Bauer, M.D., were the co-chairs. Drs. Francis, Waguespack, and Bauer are ThyCa Medical Advisors. The task force included specialists from seven countries: Brazil, Canada, Germany, Israel, Italy, Japan, and United States.
Samuel Wells, M.D. chaired the medullary guidelines task force. Dr. Wells and five additional members of the guidelines task force are ThyCa Medical Advisors.
ThyCa provided unrestricted educational grants in support of these guidelines projects. We are very pleased to support the development of all thyroid cancer guidelines.
ThyCa also mails copies of the guidelines on request. For these, plus other thyroid cancer treatment guidelines developed by thyroid cancer experts, visit the Physician Guidelines page of our web site.
Learning from the Outliers—the Exceptional Responders
Why do some patients improve when the clinical trial they're in fails? The National Cancer Institute recently launched the Exceptional Responders Initiative to help find out.
A recent article in The Scientist magazine references a study to test a drug on thyroid cancer patients. The lead researcher was Jochen H Lorch, M.D., M.Sc. of Dana Farber/Harvard Cancer Center in Boston, Massachusetts. Dr. Lorch was a speaker at a ThyCa Conference.
Click here to learn more about this study and exceptional responders.
TSH Recommendations Change for Low-Risk Patients with Differentiated Thyroid Cancer
"We have evolved our thought process to suppressing people much less frequently for a shorter period of time and with less medication," said Laura Boucai, MD, an endocrinologist at Memorial Sloan-Kettering Cancer Center and senior author of a new study on TSH suppression in patients with differentiated thyroid cancer (papillary and follicular).
The study found higher risk of osteoporosis but no benefit in reducing recurrence of the cancer in patients who were at low risk of recurrence.
In the same article in Medscape Medical News, David Cooper, M.D., of Johns Hopkins University School of Medicine and chair of the 2009 American Thyroid Association guidelines, reported that the ATA guidelines to be released later this year will advise that there be no post-thyroidectomy TSH suppression in low-risk patients.
Click here for more about this study.
ThyCa is very saddened by the loss of our dear friend, Rob Bohning. Rob died March 16, 2015, after living life to the fullest while dealing with stage IV medullary thyroid cancer.
Rob touched many people in his thyroid cancer journey. He attended his first ThyCa conference in Los Angeles in 2011, just days after his initial surgery and diagnosis.
We were impressed by his strength, inspired by his endurance, and grateful for and comforted by his caring for others going through similar experiences. Regardless of his personal struggles, he still reached out to share his encouragement with others.
Rob was a gifted nature photographer, and his donated canvases for the ThyCa Dinner Auction were highly sought after. Before his health became too compromised, Rob founded 4th Stage Cycling to encourage people to donate funds to thyroid cancer research and he amazed us with his 50+/100+ mile bike rides.
Rob's family was his strongest support, and his son, Andrew, ran his first triathlon at 8 years old in Summer 2014 and raised over $7,000 for ThyCa’s thyroid cancer research funds.
We express our deepest condolences to his wife, Lori, and their two young children, Olivia and Andrew.
Donna Sherman’s Yoga and More afternoon was a big success, raising thyroid cancer awareness and funds for ThyCa.
Donna writes:
“The event was a success with a filled yoga studio. I understand that some people who could not attend sent donations to ThyCa via the web site.
“I had so much fun both organizing and running this event, so much so that I may have to do more! What you can't see from the photos are the (fake and temporary) butterfly tattoos that I handed out and many participants were wearing; and the gorgeous flowers and sunlight that adorned the studio.
“What a wonderful day! I gave out small blue, purple and pinkish bottles with the blue ThyCa awareness bracelets in them.
“There was a time in my life when I believed that one had to ‘think big' to initiate positive change. While in some cases that may be true, I've come to see the benefit of acting locally, and taking small, steady, and sustaining steps.
“I have a feeling that our thyroid cancer community is showing the world that we are indeed powerful butterflies, capable of negotiating challenges with grace and strength!"
ThyCa Orange County, which meets at Hoag Hospital in Newport Beach, California, has a licensed Therapy Dog mascot! In this photo from the group’s March meeting, Simka was placed on the table for the benefit of the group photo (it's not her regular spot!). Simka is certified through Therapy Dogs International, and is a joyful addition to the group.
Facilitators of the Orange County group are Shilo Bartlett, Anne MacPherson, and Ray Bartlett. Visit this page for more information.
Letter from Australia: Rachael’s Story
by Rachael Featherstone of Canberra, Australia
I was 18 years old when my mother noticed a lump on the side of my neck. So, two weeks before I was supposed to go overseas to volunteer in Peru, I had a cautionary biopsy to make sure it was nothing.
Two days after my grandmother passed away from lung and bone cancer, I was diagnosed with metastatic papillary thyroid cancer. I quickly became known as the “girl who couldn't go to Peru because she got cancer”!
The whole process was so quick, with the decision to cancel my trip to have surgery made for me, despite the fact that I was so scared and confused.
I felt fine, how could I have cancer? Through the support of my family, my friends and ThyCa: Thyroid Cancer Survivors’ Association, I slowly became more confident with my diagnosis. Admittedly I did become a bit of a hypochondriac, checking the online forum every time I felt a little off!
I was lucky to be able to study whilst going through treatment (including working on major assignments during my radioactive iodine treatment!) but not without consequences. I scraped through my year suffering from anxiety, and the fear of the doctors finding more cancer.
I have now been officially cancer free for a year now! Not that I'm completely fine; I still suffer from aches and side effects.
I’m now spending my time making the most of life, studying Science Communication so I can help the world understand what it means to have cancer.
Experts To Present Free Seminars in Numerous States and Online
Free seminars are coming in April and throughout the year. Visit our Calendar of Thyroid Cancer Events for details about these events, and more.
This handy page is linked on our Home Page.
My Story
By Jill Paris of Ontario, Canada
I had just delivered my beautiful baby daughter when only a few days later I discovered a huge lump in my neck while having a shower. This was February 2012. I was 35 years old. With a girlfriend who had discovered a lump the year previous, I was stunned that I had one as well. (Thankfully - my girlfriend's lump was benign — hallelujah!)
My fear quickly set in, but life was very busy with a 4.5-year-old son and newborn daughter. I did not have time to stop or time to think about what was going on.
I remained positive, as I do with most of life and carried on the best way I know how. That year was a flurry of necessary appointments, biopsies, tests and ultrasounds where they discovered this lump on one side was quite large, 80% malignant, and numerous other nodules were found on the other side. Surgery was set for a complete thyroidectomy with RAI treatment to follow a few months later.
Right from the beginning I received a positive prognosis and with determination, positive outlook, and an insanely supportive group, I knew I would make it through just fine.
I am proud to say that I am 2 years cancer-free and continue to live a healthy, positive, fun-filled life.
When people call Thyroid Cancer the "good cancer" or say, "If you're going to get one, this is the one to get," it is very discouraging. I get it. We get it. There are worse types and situations with thyroid cancer than mine, and other worse situations out there. I have personally lost (as so many have) loved ones to cancer. But to diminish what the "c" word means to someone and how it can affect them is disappointing.
I know I am extremely lucky. I know I didn't do anything to get this. I know that I am also reminded every morning when I take my thyroid medication, have bloodwork, or feel a little off some days. I know that I am also worried to EVER find another lump EVER again. Will that be the one I don't beat? Was this a wake-up call? Any brush with cancer is a scary one and I am well aware of how fortunate I am.
My husband, parents, and children, as well as friends and neighbours all helped get me through. Their support was endless, fearless, and never wavered. The ThyCa website was a fountain of knowledge, and offered support and tons of information.
Early-Bird Registration Now Open for the Conference!
We’re lining up a terrific program for the 18th International Thyroid Cancer Survivors’ Conference, October 2-4 in St. Louis, Missouri.
If you haven’t attended the conference before, scroll down on the Conference page to get an idea of the great range of experts, topics, and opportunities to meet and share experiences with others coping with all types and situations with thyroid cancer.
Early-bird registration is now open, both online and by mail. As always, scholarships are available on request to cover the registration fee.
Visit our Conferences page to register and to get the latest updates. We’ll keep adding information, from now to the start of the conference. Hope to see you at the Conference!
ThyCa’s 20th Anniversary—You’re Invited To Help
For more ways to help, visit our How to Help page.
My Story
By Isabella Prida of California
My name is Isabella Prida and I am a thyroid cancer survivor. When I was 12, my pediatrician discovered a small, benign tumor on the right side of my thyroid…. My mother is a three-time cancer survivor, so monitoring my tumor was crucial.
Everything was normal during check-ups until the check-up I had at 15. The tumor had grown a significant amount, became malignant, and during my surgery the physician found out my cancer had spread to neighboring lymph nodes.
After having a thyroidectomy and radioactive iodine treatment, it is great to say that I am five years cancer free. It was a long and hard battle, and it's a huge part of my life now. Every morning I wake up and take my levothyroxine and live my life just as any "normal" 21-year-old does.
I took my cancer journey as an opportunity to help others. Between volunteering at hospitals, writing for a few non-profit organizations, and attending college, I give speaking engagements across the U.S. and Latin America. In my Hispanic community there is not a lot of awareness about cancer in young adults and I am doing my best to improve that.
As a cancer survivor I feel it is my duty and privilege to turn my adversity into opportunity to help fellow fighters and survivors.
On Saturday, April 25, Jennifer Smart, thyroid cancer survivor, begins her Continental Divide Trail hike to raise thyroid cancer awareness and funds for ThyCa.
In 2013, Jennifer raised awareness and funds for ThyCa by thru-hiking the 2,650-mile Pacific Crest Trail.
Visit our Rally for Research page to learn more about Jennifer, her new hike, her 2013 hike, and how you can support her efforts. 100% of donations received go to ThyCa: Thyroid Cancer Survivors’ Association, Inc.
Congratulations and thank you, Jennifer!
Low-Iodine Recipe of the Month
Contributed by Carole
Slow Cooker Latin Chicken
3-4 boneless, skinless chicken breasts
1/4 cup loosely packed cilantro leaves
2 large sweet potatoes, cubed
1 Red bell pepper cut into strips
1 15 ounce can beans (black or other), rinsed and drained
1/2 cup chicken broth
1 cup hot salsa
2 teaspoons cumin
1/2 teaspoon allspice
3 cloves garlic chopped
Lime wedges for garnish
Arrange chicken in bottom of slow cooker. Place potatoes, pepper, and beans on top.
Mix together broth, cilantro, salsa, cumin, allspice, and garlic in a bowl. Pour in cooker.
Cook on low for 4 hours. Serve with lime garnish.
Thank you, Carole! We will include this recipe in the next edition of ThyCa’s FREE Downloadable Low-Iodine Cookbook.
Free and Downloadable: Click on the Cookbook link on our home page to 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 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.
To contribute your favorite recipe or tip, send it to recipes@thyca.org.
Joining together in our online groups, through our webinars and videos, or face-to-face in our support groups, workshops, and conferences is empowering.
To all of you, our friends, fans, followers, volunteers, advisors, supporters...Thank You!
Our support of each other — whether giving or receiving — is an incredible gift. Thank you for joining us.
Your Donations Make a Difference
Thanks to your generous donations to ThyCa, we are able to fund —
- 47 thyroid cancer research grants totaling more than $1.3 million, with more grants to be awarded in 2015
- Dozens of free educational publications in 7 languages, shipped on request to individuals and in bulk to doctor’s offices, around the world
- Free year-round support online, by phone, and in-person, both group and 1-to-1
- This informative Weekly Bulletin, our web site, videos, webinars, and more
We invite you to make a donation to help others who are coping with thyroid cancer and its many challenges.
Click here to donate.
Thank you!
About this Newsletter and ThyCa
Copyright (c) 2015 ThyCa: Thyroid Cancer Survivors' Association, Inc.
This newsletter and ThyCa’s many other services and thyroid cancer research grants are made possible through the generous contributions from our donors and volunteers. Thank you!
We invite everyone’s contributions, small or large, financial and volunteer service. Together we make a difference!
Thank you to our writing, editing, and proofreading team for this issue: Carole, Lisa Cole, Kristy F., Rachael Featherstone, Leah Guljord, Pat Paillard, Jill Paris, Isabella Prida, Barb Statas, Theresa Wickerham, Cherry Wunderlich, and Gary Bloom.
You’re invited to share this newsletter with your family and friends. If you would like to suggest further topics or contribute an article, please contact us at publications@thyca.org.
The information 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 serving people worldwide and dedicated to education, support, communication, awareness for early detection through Thyroid Cancer Awareness Month and year-round campaigns, and fundraising for thyroid cancer research.
Visit our website for information about thyroid cancer, events, and how to help. Ask us for free materials and information. E-mail to thyca@thyca.org call toll-free at 1-877-588-7904, fax 1-630-604-6078, write PO Box 1102, Olney, MD 20830-1102, or visit our website.