Anyone Familiar With Pontine Gliomas??

My 8 yr. old son was diagnosed in June with a Pontine Glioma high grade. I would appreciate any information about treatments, etc. that anyone may have or have experienced.

My 7 year old granddaughter was diagnosed with diffuse pontine glioma in February of this year. She began 6 weeks/5 days a week of radiation accompanied by decadron, zofran ad pepcid, if needed. Once completed, her parents met with a group at Dana Farber to search out a study. They would not accept her until the tumor was again actively growing. Her follow-up MRI indicated that the tumor had decreased in size - from 2.5 centimeters to 1.5 centimeters and should continue to shrink even more. Dana Farber recommended several alternative therapies and her parents went with temadar, celebrex, zofran, bactrim and pepcid. It is a 28 day cycle with temadar taken five days a month, bactrim three days each week, celebrex twice daily and zofran when needed. Once beyond the radiation and decadron, which had disastrous side effects, she has had a fairly stable five months. She lost all the weight caused by the steroids, her hair has regrown in the radiated areas, her strength is good, as is her appetite. She continues to attend school.

Within the past week, she has experienced dizziness, minor headaches, and has now gone to closing her right eye, because she is beginning, once again, to have double vision. All of these symptoms are not good.

She is scheduled for her 3rd MRI this Saturday, and I don't expect the results to be good.

My heartfelt prayers are with you because no one who has not experienced an illness of a child, of this magnitude, can really understand what the family is going through. Enjoy each day that you have, because each day is a precious precious gift.

My 4 yr old was diagnosed two weeks ago. He starts radiation and chemo tomorrow. I am interested in anyone with similar stories or anyone who would like to share their experiences. Dr's tell me this is very rare and uncommon and I don't have much information. Please help with prayers for Jayden.

My son was diagnosed with a diffuse pontine glioma 9/26/2004. We completed radiation and are currently doing chemo. He is doing excellant! I have a lot of information.

Carla,

I am excited to hear that your son is doing well. My son was diagnosed with a pontine glioma on March 23, 2005. We are currently in the middle of radiation and Temodar, Zofran and Decadron (which we are tapering). Can you give me some more info? Justis is also doing well considering all he is going through, no real side effects other than tiring easily and feeling more tired than usual. And of course the weight gain from the Decadron, which is one reason we are tapering it, so they won't have to make another mask for radiation. Any info or encouragement is greatly appreciated. All of the info I have gotten so far has been dismal.
Thanks in advance
Sonya

Hi,
Your message says you have info on this please give me all the info you have. Leslie

Cams Mom,
My 11 yr old son was diagnosed with dpg on 3/11/05, he is being treated at St Jude, finished with radiation and is on a clinical trial taking Zarnestra (aka tipifarnib). So far he's doing well, only time will realy tell, but your message said that you had a lot of information and as you've been reseaching for longer I would be grateful for your knowledge. One thing we are doing is paying close attention to nutrition, something that is overlooked by conventional doctors and we feel very important, we have found a nutritionist in Utah that specialises in brain tumors and specifically gliomas. Max's only symptoms so far are double vision and a very slight movement on right side in certain tests. Look forward to hearing from you. Thanks

My 7 year old daughter has been diagnosed with DPG on march 14/2005. We have just finished the first set of treatments with Radiation/Chemotherapie (temzolomide)/decadron.
The weight gain has been a very big issue and the mask had to be replaced once, by the time of the
last radiation treatment even the second mask had
become too small. We are slowly decreasing the
decadron with hopes that none of the symptoms get
worse, in which case the decadron would be increased again.
I would love to hear from other families that have children diagnosed with DPG and find out about their experiences with treatment.

Hello Petra:

My name is Maria. My 5 year old son was diagnosed with a DPG on November 14, 2004. We went through 6 weeks of radiation and temodar everyday along with decadron, zantac, and diflucan. Now that we are passed the hardest part of treatment I feel like we have hit an oasis. He is doing great the tumor was 5 cm in Nov. 2004 now its shrunk to 2 cm. He was able to finish the last part of school which I was so glad. As for my personal journey through this I was able to find a great counselor and I am on antidepressants to help me get through my lowest times. My son is being treated at All Children's Hospital in St. Petersburg, FL. We have also made a website to let our friends and family know how he is doing it's josiahupdates.com

Since I posted the last message unfortunately Brandy isn't doing all that great. We tried to wean her off of the decadron because her weight gain was just getting too much of a problem physically for her. But now her symptoms have come back worse then they ever were, daily headaches, loss of balance, and she did gain more weight nonetheless. We were called in yesterday for an unscheduled MRI to find out what is going on, but do not know the results
yet. I'm bracing for the worse. Did anybody try out some alternative therapy's and felt that they were worth while?