Brain Stem Glioma - Treatment options?

9 year old girl is diagnosed 1.5 years ago with the brain stem glioma (originally pontine, but now it's medullary as well).  She received 4 sessions of chemo and radiation treatment. It appeares that the treatment stopped the tumor growth, but due to its location was deemed to be non-operable by the local medical staff and she was discharged from the hospital.  Yesterday she collapsed and was taken to an ICU, but now she is feeling better.

Is there any (standard, clinical trial, experimental) treatment option available at this point?

[Michael Lim, MD]

There may be clinical trials available.  At Hopkins there are two trials ongoing for brainstem glioma.  Dr. Kenneth Cohen is a nationally recognized expert for pediatric brain tumors.  If you would like, his contact information can be found at:

http://www.hopkinskimmelcancercenter.org/experts/doctor.cfm?doctorid=69

[prizrak]

Thank you so much, Dr. Kim!  I'll get in touch with Dr. Kenneth Cohen ASAP.

[magr7]

My  6yr old daughter has being diagnosed with a brain stem glioma in the pons section of the brain. We found out on Wednesday. She only had symptoms for 7 days. At the moment we are looking for anyone who we can talk to as im sure you will be going through the same thing as we are. and it sounds like you have being for a while.I am trying to get in touch with Dr Kim and I am not sure how to do that.Can you help us with that. We have being told that the tumour is not resectable. This is not the answer we were hoping for and we will do our best to secure our daughters life.  I hope you get all the information and support you need. Even though this is new for us we can offer any help of any form to you just let us know.

Good luck  Best wishes,

Maggie

[prizrak]

My heart goes to you... Very hard time lies ahead of you and your daughter...  Its a very nasty type of tumor, but there are some options:

1. Educate yourself about it as soon as possible. Here is a good place to start:
http://www.cancer.gov/cancertopics/pdq/treatment/child-brain-stem-glioma/Patient
You need to equip yourself with the terminology and basic facts before talking to any specialists.

2. Get in touch with Dr. Kenneth Cohen of John Hopkins Medicine. He is a nationally recognized expert for pediatric brain stem gliomas. Just call his office (provided below) and he will get in touch with you personally. I spoke to him last week and it was very helpful to me.
Phone: [phone]
URL: http://www.hopkinskimmelcancercenter.org/experts/doctor.cfm?doctorid=69

3. Get in touch with St. Jude Children's Research Hospital:
Address: 332 North Lauderdale Street
Memphis, TN 38105 - 2794
Phone: [phone] (general information)
Toll Free: 1-866-278-5833 (physician's patient referral)
Fax: [phone]
URL: http://www.stjude.org

The sooner you start an actual treatment, the better chances your daughter will have.

Good luck and best wishes to you and your girl!