My 4 Yr Old Grdson Has Brainstem Glioma-Help!

Hi, my 4 yr old grandson was just diagnosed with brainstem glioma the size of a plum. We just completed 6 weeks of radiation at Vanderbilt. They say that is all they can do. He is still on low doses of steroids. We can tell the tumor has shrunk some because his left side is not as paralysed.

PLEASE HELP! Does anyone know of any other treatments we can pursue? We are desperate not to lose our little fellow.

Barbara

I am sorry to hear about your grandson, cancer for anyone is horrible espically for the young. I am a Stage 4 Lung Cancer with bone mets patient myself. I have been battling this for 23 months now. I had not planned on writing on this board until I was completely healed, but when I read your message I felt you needed some hope. I have had 70 rounds of radiation and 20 rounds of different chemos. My cancer continued to spread through these treatments until I got this machine called a Vibe Machine. Invented by Gene Koonce from Colorado and can be found on Vibemachine.com. 31 days after using it my bones started decreasing in uptake(cancer). Last month I had a full body bone scan and a c/t of my chest. The miracle I have been praying for started when I read the results on 01/12/2006 and then was told by both my radiation and chemotherapy oncologist that all my bone cancer was gone except for T11. I still have the tumor in my left lung - 1.75cm. I was told by UPMC docs that once you get bone cancer you can't get rid of it - no cure. I truly feel this machine is literally saving my life, I am still not out of the woods yet having this spot on my spine and the lung but I believe it wont be long before the bone cancer is completely gone. I have been doing research online now for almost 2 years trying to figure out how to save my own life because I was told stage 4 NSCLC patients with bone mets live an average of 5-8 months, some a little longer. After that last scan, and having this machine in my home to use everyday, I truly feel I will beat this and then I will tell everyone about this wonderful machine.

Hi Barbara,

My thoughts and prayers are with you. Have you heard of a clinical trial that is on-going at the Burzynski clinic in Houston - specifically for brainstem glioma - using Antineoplastons? Go to Cancermed.com for more information. The trial is FDA approved, however the drug is not. Most insurance companies will not pay for it but it is showing much more promise and good results (some cancer-free)than the standard route of chemo and radiation. My husband was diagnosed with a grade III brainstem glioma on 12/2/05. He's just about to complete 30 sessions of radiation with concurrent Temodar (chemo). His quality of life was for crap! We will not pursue any further rounds of chemo and are nearly certain we will go to the burzynski clinic when/if necessary.

Let me know if I have be of any further help. You and your grandson are in my prayers.

Mary
Wife of Steve
DX 12/2/05
Grade III brainstem glioma

Please consider consulting with Dr. Burzynski in Houston, Texas. He has had great results in treating brain cancer with minimal side effects.
His website is www.cancermed.com.
Good luck

Vanderbilt is a fantastic medical center. There are 2 other locations in the Southeast you might want to explore. St Jude's in Memphis and Duke (they have a robust pediatric brain tumor program). These centers have access to many clinical trials and will review your grandson's scans and make recommendations. This statistics on this disease are terrible, but there are many people who survive and thrive for many years.

Hi
I am in the same situation as you are but in our case it´s my daughter, Greta soon 4 years old, who got a diffuse brainsteam ponsglioma. She has one week left of her RT with Temodar. We also give her a homeopathic medicine called Ruta 6 and Cacareca Phosphorica 3X. At first I said no to this, simply becuase I don´t beleive in homeopathy and to be honest, I still have my doubts. But when I read more and more about this medicine my wife and I thought "what do we have to loose ?" There are no sideeffects and the people I have contact with and who are using it, says the same thing. Almost all of them have stable or better MRI´s when having this medicine (that is even WITHOUT having RT and Temodar). Greta has no problem of taking them and since she started with them (4 weeks ago) her symptoms and her general status is much better. We have as well made several second opinions from hospitals in the US and one is now under Dr Linda Liaus eyes at UCLA. I have also read about Byrzinski Clinic but for us living in Sweden it´s almost impossible. I also have my doubts about, not their skills, but their methods. It seems to me after have had direct contact with them that they are very interested in just making money. If you want more information you are very welcome to contact me. Since this started (nov-05) I´ve searched the WEB for anything that might help and cure Greta. And I´m still doing it.

Best regards to you all and especially your grandson. I´ve mad a website for Greta. It´s in swedish but there are some photos and links (most of them are in english):
"www.gretaeriksson.se"

Jan Eriksson. Mailadress:
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I lost a daugher to Diffuse Pontine Glioma 8/4/04. She lived 18 mos. past diagnosis, double the average life span. She did radiation and then a Alpha Interferon 2B (Peg) at NIH before going onto Temozolomide. Natural therapies helped very much with side effects from steroids, etc. She had bleeding from the tumor that was also successfully treated with homeopathy. I've recently seen that there may be some new treatments out there - maybe check this link, http://pub.ucsf.edu/newsservices/releases/200606271 ' >http://pub.ucsf.edu/newsservices/releases/200606271
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