Anyone familiar with Pontine Gliomas??

My son Davis had an MRI May 1st, 2003 during his diagnoses for a processing disorder. They found two masses in the pons of his brain. We were referred to Vanderbilt's Children's Hospital. After weeks of tests including a lumbar puncture, blood tests, more MRIs and a PET scan the doctors decided it was either very slow growth or not growing at all. They decided we would watch it every 6 months with an MRI. November 2004 the tumors had grown together and they took up the entire circumference of the pons and were actually pushing outward. He was now diagnosed with a diffuse intrinsic pontine glioma. We immediately embarked on an agrressive treatment regimen. Davis received 33 radiation treatments. They used Intensity Modified Radio Therapy (IMRT) which reduced the residual affects of the radiation. One month after completion of IMRT an MRI showed a significant reduction in the tumor. The pons was back to it's original size and shape. We then began 12 months of TEMODAR in order to manage the tumor. Davis has not shown any discernable symptoms of this tumor. He has not had to take steroids. Only Zofran for his nausia during radiation and chemo. This month we were to begin his 12th and final cycle of TEMODAR. His MRI on 3 January showed tumor progression. We begin a clinical trial on the 23d that is a combination of a monclonal antibody and chemo. These drugs have worked well in combination for adult patients with colorectal cancer. He will receive infusions of ERBITUX (Cetuximab) which is the monoclonal antibody along with IRINOTECAN. This is a Phase I clinical trial being conducted at several pediatric cancer centers. So far, the only alternative medicine we have used is prayer, lots of prayer. The TEMODAR was very successful in suspending regrowth of the tumor. However, they never promised that it would last. The hardest part for our family is the inability to plan beyond next week.

God Bless you all.
Matt

Hi Christine,

For some reason I can't find your email address on my internet but I wanted to let you and anyone else interested what is now going on. Just after Christmas Max's tumor started to progress, he was having a few problems swallowing and I noticed some weakness on the right side of his face and an MRI confirmed what I already knew. After looking at what therapies St Judes and Vanderbilt had to offer and talking to the doctors at both hospitals, we decided that the monoclonal antibody Theraloc had the most hope with the least side effects. As you know the drug is not available in the US yet and won't be available in Canada for a couple of months so I'm writing this from Germany where most of the studies have been done. We won't know for another couple of weeks whether Max will respond to this treatment (he has had 2 infusions so far) but he is holding steady and we are able to explore the area although he does get tired.

If anyone is interested in this treatment, I'm happy to provide more details about the 'nuts and bolts' (accomadation etc.)

In the meantime, auf wiedersehen! Ann

Hi Ann
My name is Melinda and my son was diagnosed back on Sept.8th with a DPG. He was immediatly placed on steroids and began 6wks of radiation therapy. We also began Dr. Banerji's Ruta/Cal Phos remedy along with other supplements recommended my his naturalpathic doctor. Its been approx. 3 month since he finished radiation, and he is doing great. He's only taking the homeopathics, and is currently symptom free. We have read some of the info. concerning Theraloc, and will be talking to the Clinical Coordinater here at Denver Children's Hospital about the possible trial. Any info. you could share about whats happening in Germany would help us a great deal. We are willing to go anywhere! I know that clinical trials can be a long time in happening, and we simply may not have time to wait. We have family there, and my husband's company has offices there, so we wouldn't hesitate to come out if there are good reasons to.
We have a blog website set up to keep people informed, its Steadman.blog.com. Please feel free to contact us there, or reply back here.
Thank You!
Melinda

Hi Melinda,

Sorry I haven't replied sooner, its been a nightmare trying to keep up with everything. Max did not respond to the treatment all though I would thoroughly recommend giving it a go, I got home last night. I went to your blog site but it didn't appear to have your complete email address on it so please let me know whether its .com or .net or whatever, I'm sure this site will let you do that. I have Prof Bode direct phone number (he preferrs phone calls) and I checked with him before I left that it would be OK to give it out to other parents of dpg kids, also Theraloc will be available in Canada within about 2 months. Hope to hear from you, Ann

Ann,
I'm so sorry to hear that Max didn't respond to treatment. How long were you guys out there? It must not take too long to determine if they will respond or not. Do you guys have any idea on what to do next? We've begun to notice some side effects coming back in Ben. He's scheduled for an MRI on Mar. 14th, but we may insist on doing something sooner. Theres nothing left for us to consider except clinical trials.
The rest on my email address is .net, so its melsteadman at mesanetworks dot net. Where at in Germany is this study taking place?
Please keep me updated on Max. I will pray for him to find a miracle.
Talk to you soon,
Melinda

I am so sorry about the loss of your daughter. I am a little confused though. When did your daughter pass away? You said April 2006 in a few posts. It is now March 2006.

To Jaydens' mama... I see that your messege is just over a year old.... My son Kelley was also 4 when he was diagnosed with a pontine glioma, he passed away 5 months later. I don't know if you'll see this msg, or how things have gone for you but either way I know you need support, so if you are still using this msg board I would be happy to hear your story and know that I understand. sincerley, Kelleys' mom

Hi all - My niece was just diagnosed on April 1, 2006 with the worst kind of tumor, intrinsic pontine diffused glioma. She just turned 6 years old in January. She is in St. Jude's but I am seeking alternative remedies that may also be helpful.

Has anyone heard of Protocel? If so, have they heard of it helping?

Thanks so much for your help. Here is Maria's website if you want more info: www.prayersformaria.com. Thank you.

Eileen

Hi Eileen:

First of all I would like to tell you how sorry I am to hear about your daughter. I just lost my daughter due to a nine month battle with a diffuse pontine glioma. This is the worst thing I have ever witnessed. Value every single minute you have with your daughter. While she is still able to get around get in touch with the Make A Wish Foundation and help grant her wish while she is able to enjoy it. There is very little information about DPG at this time. If I had to do everything all over again, I would have never put my daughter through radiation, chemo or the steroid medication. It only prolonged her life and allowed this tumor to take everything precious to her away bit by bit. At the end she was blind, deaf, on a feeding tube, unable to walk, or move her arms, in diapers and could not speak. Finally, she could not breath. This will be very difficult to watch, but rely on friends and family to get you through this. Most of all if you are working, take off the time so that you can be with your daughter. I will pray for you and your family to get through this.
Lots of Love,
Teresa

Hello I posted a while back.. My son Cody 7 years old got dx Sept 25 05 with a Diffused Pontine Glioma

My little boy passed away on Dec 16 05 after a short three month battle with this ugly cancer...


I have a website for him it is Caringbridge.com
the site name is "CodyGilbert"

I have to say PLEASE KISS your child and give them HUGS as much as you can because you may lose them. I would give ANYTHING to be able to kiss my son on the forhead and give him a hug again..

GOOD LUCK and GOD BLESS...