Clinical Trials for People Living with MEN 2A

Friday, 07 June 2013 09:15 Last Updated on Friday, 07 June 2013 09:19 Written by Amanda 0 Comments

Researchers with the National Institute for Health and the National Cancer Institute have two medical trials that could potentially benefit people living with MEN 2A.

The first study, currently open and recruiting participants, is a Phase 2 study of a vaccine (GI-6207) in patients with recurrent Medullary Thyroid Cancer (MTC). The goal of this study is to get the individual’s immune system to respond to the vaccine by making immune cells that can recognize and attach tumor cells. Patients involved with this study will receive up to one year of treatment. Interested? Click here to learn more.

The second study, which will open in about two months, focuses on Ponatinib for advanced MTC. The primary objective of this study is to observe the overall response rate to Ponatinib in the treatment of three types of patients:

Patients with advanced metastatic MTC who have tumors with RET mutations and have been previously treated with a RET inhibitor.
Patients who have tumors with RET mutations and have not been previously treated with a RET inhibitor.
Patients who have tumors without RET mutations, whether or not they have received a prior RET inhibitor.

If you would like more information about this trial, click here.

Living with Multiple Endocrine Neoplasia

Friday, 31 May 2013 13:48 Last Updated on Friday, 31 May 2013 13:48 Written by Amanda 0 Comments

Susan was diagnosed with Multiple Endocrine Neoplasia Type-1 at age 11 and lived a fairly “normal” life for the next 20 years. She participated in endurance events and eventually completed the IronGirl Atlanta event in June of 2008. Her journey took a turn in 2009 when her sister passed away and it was then she realized living with MEN means more than maintaining; it means learning about the disease and engaging with people to advocate for your health. After a series of surgeries, Susan is back in action and completed the IronMan Challenge in Canada August 2012. Read more about Susan’s journey.

Gary’s tale begins in July of 2010. During the roller coaster ride, he kept his family informed via email and that’s how Linda Hageman, his cousin, came to discover Gary had MEN1. His long-term prognosis is good. Gary’s attitude is that MEN is something he can live with; it just requires some life adjustments. In his story, he outlines the lessons he learned during the whole experience. His top two lessons are:

Always consider getting a second opinion on any major medical decisions. Remember it is your life and you need to do what is best for you.
Don’t be afraid to ask questions if you have them. If the answers you hear make you uncomfortable ask more questions or seek another opinion.

Read more about the lessons Gary learned while discovering he has MEN.

Living with MEN is a section of our website designated for you to share your story. Each month, we’d like to feature a story on our blog roll. If you are interested in being a guest blogger, please contact Amanda Womac. Thanks for your help!

Know Your Genes

Friday, 17 May 2013 11:02 Last Updated on Friday, 17 May 2013 11:08 Written by Amanda 0 Comments

This past week, Angelina Jolie made headlines when she announced her decision to have a double mastectomy. Because her mother died from breast cancer, Jolie took preventative measures to reduce her risk of breast cancer.

But how many people are aware of their genes?

Genetic testing is great for people with a family history of medical issues, such as cancer. But Dr. Mark Lewis, assistant professor in General Oncology at MD Anderson Cancer Center and the Vice President of the Hageman Foundation board of directors, suggests that before you get tested, you should get genetic counseling.

In a recent article, he states: “I believe it’s critical that anyone who considers genetic testing first seek out genetic counseling. Counselors can help explain what genetic testing can and can’t do.”

Not only can genetic counseling help you understand your risks of certain cancers or diseases, but it can also help with choosing the best course of action for YOU.

Do You Know About ERCP?

Friday, 10 May 2013 10:31 Last Updated on Friday, 10 May 2013 11:39 Written by Amanda 0 Comments

The following article was originally published on the National Digestive Diseases Information Clearinghouse.

What is ERCP?

The bile ducts carry bile from the liver to the duodenum. The pancreatic ducts carry pancreatic juice from the pancreas to the duodenum.

Endoscopic retrograde cholangiopancreatography is a procedure that combines upper gastrointestinal (GI) endoscopy and x rays to treat problems of the bile and pancreatic ducts. ERCP is also used to diagnose problems, but the availability of non-invasive tests such as magnetic resonance cholangiography has allowed ERCP to be used primarily for cases in which it is expected that treatment will be delivered during the procedure.

What is upper gastrointestinal (GI) endoscopy?

Upper GI endoscopy is a procedure that uses a lighted, flexible endoscope to see and perform procedures inside the upper GI tract. The upper GI tract includes the esophagus, stomach, and duodenum—the first part of the small intestine.

Free MEN Educational Opportunity

Friday, 03 May 2013 13:56 Last Updated on Friday, 03 May 2013 14:11 Written by Amanda 0 Comments

Are you looking to expand your knowledge of Multiple Endocrine Neoplasia (MEN)?

Do you want to learn more for FREE?

Make plans to attend the second annual American Multiple Endocrine Neoplasia Support Seminar June 7, 2013, at Mayo Clinic in Rochester, Minnesota!

Join individuals living with MEN Types 1, 2A and 2B, their families and other medical personnel for a day of learning and engagement. This free seminar is designed to be fun, social and informative in order for attendees to build a network of peers living with MEN. The seminar is free and open to the public, but registration is required.

Doctors with the Mayo Clinic will present topics on the types of surgeries MEN patients may face such as thyroid, parathyroid, pancreatic, pituitary and adrenal surgeries. Surgical care nurses will discuss hospital and surgical care for MEN patients. After lunch, Dr. David Farley, professor of surgery at Mayo Clinic and a Hageman Foundation board member, will lead participants on a tour of the Multidisciplinary Simulation Center at Mayo Clinic.

Other topics covered will include the basics of MEN, genetics of MEN and long-term care for MEN patients. Linda Hageman, founder of the Hageman Foundation and a Registered Nurse for over 30 years, will share stories from patients she has helped through the Foundation’s educational project – AMENSupport.org. Click here to download the complete agenda.

The seminar will close with a reception hosted by the Hageman Foundation. MEN patients will have a chance to network with each other, as well as medical personnel from Mayo Clinic and representatives of the Hageman Foundation.

The DoubleTree Hotel, which is in walking distance of the Mayo Clinic, added more hotel rooms at the AMEN Support Seminar rate. Call the hotel directly to make reservations (507.281.8000). The block of rooms will be held until May 16, 2013.

Don’t miss out on this great opportunity to learn more about MEN! Register today!

Medical Dictionary

Clinical Trials for People Living with MEN 2A

Living with Multiple Endocrine Neoplasia

Know Your Genes

Do You Know About ERCP?

Free MEN Educational Opportunity

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