Diffuse Intrinsic Pontine Glioma

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Diffuse Intrinsic Pontine Glioma

by karthik13 on Sun Sep 02, 2012 06:37 PM

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My 5 year old daughter was diagnosed with pontine glioma yesterday at Children's Hospital of Philadephia (CHOP). Their head of neuro-oncology has given her between 8-12 months if we're lucky. We don't plan on giving in without a fight. From the various threads and on this message board, it's clear that Dr. Banerji's methods seem to work on pontine glioma cases. Just sent him an email. Are there other ways to reach out to him or is email the best way? I assume he gets inundated with emails. Any recent success stories with kids, pontine glioma and Dr. Banerji's methods? Thanks.

RE: Diffuse Intrinsic Pontine Glioma

by siblingof on Sun Sep 02, 2012 07:32 PM

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I'm so sorry to hear about your daughter's diagnosis. The one success story I have heard about DIPG, the child was treated at St. Jude's Children's Research Hospital. The child was diagnosed six or seven years ago and is alive, in school, and doing well.

RE: Diffuse Intrinsic Pontine Glioma

by karthik13 on Mon Sep 03, 2012 02:33 AM

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Thanks. I have a call scheduled for tomorrow with an oncologist at St. Jude's.

RE: Diffuse Intrinsic Pontine Glioma

by sarashanapalli on Mon Sep 03, 2012 07:32 AM

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One of my close relative Master Gujja Ayush aged 5 years  living in Hyderabad,India diagnosed Diffuse Pontine Glioma on 28 august2012.Wevisited most of the reputed allopathic doctors and the final conclusion is INCURABLE.

Master Gujja Ayush is now on alternative medicine calledAyurveda.Itshows some relief.

regards,

Arashanapalli S

RE: Diffuse Intrinsic Pontine Glioma

by Woody679 on Mon Nov 19, 2012 06:22 AM

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My son got a stage 4 dipg in dec 2011 and went through six weeks of intensive radiation at dorenbechers children's hospital in Portland Oregon I am happy to say not one MRI has showed the tumor and he was given a 10 percent chance to live and he is a normal kid

RE: Diffuse Intrinsic Pontine Glioma

by DIPGMom16 on Tue Nov 27, 2012 04:57 PM

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My 16yr old daughter was diagnosed with DIPG in March of this year.  She undewent radiation treatments at NIH in Maryland and is now enrolled in the vaccine study at the Childrens hospital in Pittsburg.  After the radiation she has done very well.  We had looked at numerous studies, but this one had the least side effects that we could tell.  My only recommendation would be to talk to several doctors and ask their opinion.  Dr. Warren at NIH was exceptional in helping me understand the different studies out there.  While none are actually proven to to work some like the vaccine study and the one at St. Jude do have positive results.  Good luck and god bless.

RE: Diffuse Intrinsic Pontine Glioma

by hemmern on Wed Dec 05, 2012 02:05 AM

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I am so sorry to hear about your daughter. Much love and peace to you!

Here is another option that I've heard success with:

http://cornellneurosurgery.org/pedneuro/dipg-news.html

Here's the where I found it, unfortunately Caitlin passed away but if the treatment is started earlier it has a better chance of helping. And there was progress.

http://www.cheeringforcaitlin.com/post/31121518579/i-have-a-

I really never want to see another child lose the battle with this awful cancer. I wish the best for you and your family. 

RE: Diffuse Intrinsic Pontine Glioma

by Woody679 on Wed Dec 05, 2012 03:16 AM

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On Dec 05, 2012 2:05 AM hemmern wrote:

I am so sorry to hear about your daughter. Much love and peace to you!

Here is another option that I've heard success with:

http://cornellneurosurgery.org/pedneuro/dipg-news.html "" target="_blank" rel="nofollow">http://cornellneurosurgery.org/pedneuro/dipg-news.html " target="_blank" rel="nofollow">http://cornellneurosurgery.org/pedneuro/dipg-news.html

Here's the where I found it, unfortunately Caitlin passed away but if the treatment is started earlier it has a better chance of helping. And there was progress.

http://www.cheeringforcaitlin.com/post/31121518579/i-have-a- correction"" target="_blank" rel="nofollow">http://www.cheeringforcaitlin.com/post/31121518579/i-have-a- target="_blank" rel="nofollow">http://www.cheeringforcaitlin.com/post/31121518579/i-have-a-

I really never want to see another child lose the battle with this awful cancer. I wish the best for you and your family. 

I feel so badly for the families that have to go through this with their children I know what it's like somehow I have been blessed that my sons tumor is gone that the radiation worked for him dorenbechers children's hospital in Oregon is the best...I'm always here if anyone needs to talk

RE: Diffuse Intrinsic Pontine Glioma

by ak199 on Mon Sep 08, 2014 04:55 AM

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On Sep 03, 2012 7:32 AM sarashanapalli wrote:

One of my close relative Master Gujja Ayush aged 5 years  living in Hyderabad,India diagnosed Diffuse Pontine Glioma on 28 august2012.Wevisi ted most of the reputed allopathic doctors and the final conclusion is INCURABLE.

Master Gujja Ayush is now on alternative medicine calledAyurveda.Itshow s some relief.

regards,

Arashanapalli S

How is Ayush doing now? Please respond and let us know.. fathers like me need info very badly. 

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