Tuesday, July 31, 2007

Lyme Disease and Pediatric Medullary Thyroid Cancer

I received two emails recently and wanted to pass on the information from them in hopes that it will help someone else out there.

Michelle from the Online Lyme Disease Support Group asked if I could share their link which I'm more than happy to- mdjunction.com/lyme-disease. Michelle says "MDJunction is a health community focused on becoming a free center for Online Support Groups". So if you have Lyme Disease or know someone who does please take the time to check this group out. No one should have to fight alone.

I also received an email from my friend Mary asking if I could pass on some information that was shared on our Medullary Thyroid Cancer group. We have all watched the progress of the Zactima trials for a few years now but them doing a trial study on children is new. I have seen some fantastic results thanks to Zactima and honestly wouldn't hesitate to use it myself when the time comes. Here is the post by Jan Halzel...

"FROM JAN HALZEL - THYCA MTC LISTSERV FACILITATOR:
Hi to everyone, I just wanted to take a minute of your time to tell you more about the new Zactima (zd6474) study which is about to enroll its first patients. The study is for children with hereditary MTC. The trial is being conducted asa collaborative effort between Dr. Wells and the Pediatric Oncology Branch of the National Cancer Institute in Bethesda, MD which is just outside of Washington, DC. All of the patients will be admitted to the NCI Clinical Center. However, some of the patient's treatment can be managed by their local doctor, therefore travel to the NIH will not be as frequent as with the adult trials. It is expected that help with expenses will be provided. Enrollment will be open to children who live in the U.S. or Canada.


As most of you know, Zactima has shown promising activity for hereditary MTC in adults. Unfortunately, there are also children with advanced MTC who need further treatment. This trial is intended for children with advanced local or metastatic MTC who have been advised by their doctor that they needfurther treatment. To qualify for the study, they need to have a measurable tumor that is at least 2cm (or 1cm if on a spiral CT). If you know someone whose child might benefit from this investigational study, please be sure to pass along the information.

This is an important opportunity for children with this disease. The trial is scheduled to open at the NIH during the week of July the 9th. For more information, please feel free to contact Dr. Wells directly at 919.201.0310 or via his NIH email address which is wellss@mail.nih.gov.
JanRachel's
momRachel's
somatic mutation M918T (sporadic)
currently on ZD6474. "

I would like to add that Dr Wells is an amazing man. He is the most caring doctor I have ever known and he cares more about his patients than anything else. If I were to ever lay my childrens' lives in a doctor's hands, it would be his.

3 comments:

Tom Paine said...

Hi,
This stuff gives the real information one needs. One can feel like reaching the destination.
Thanks.

John J. Kaiser said...

"And in the end, it's not the years in your life that count, it's the life in your years."

A beautiful statement.

Anonymous said...

just saw the site! its great!

not just lyme they have hundreds of support groups (i think ones for you too).