Diffuse Pontine Intrinsic Glioma

Dear all

I am writing on behalf of a young man in the UK age 28 in the hope that families of other young people with this inoperable type of brain stem tumour might be able to pass on any information about treatment or clinical trails for example with the drug nimotuzumab (Theraloc) which is not available to him via the NHS.

 

Many thanks and best wishes

 

 

On 6/10/2008 For J wrote:

Dear all

I am writing on behalf of a young man in the UK age 28 in the hope that families of other young people with this inoperable type of brain stem tumour might be able to pass on any information about treatment or clinical trails for example with the drug nimotuzumab (Theraloc) which is not available to him via the NHS.

 

Many thanks and best wishes

 

Others here in the US are trying Avastin and some others are putting their hope in Poly MVA.  It is difficult to provide you more than this since I really have no idea what may be available in the UK.

Check out "Yahoo Health Groups - DIPG".  A good deal of the US DIPG families use this message board as a way of sharing info, and you may find it a very valuable resource.

Certainly wish I could be of more help,

Chet Hammack (Aidan Zauggs very proud Grandfather)

http://www.WhyNotAidan.com

 

 

On 6/10/2008 For J wrote:

Dear all

I am writing on behalf of a young man in the UK age 28 in the hope that families of other young people with this inoperable type of brain stem tumour might be able to pass on any information about treatment or clinical trails for example with the drug nimotuzumab (Theraloc) which is not available to him via the NHS.

 

Many thanks and best wishes

 

The first thing I need to know is can he travel to the U.S.?My daughter was treated with nimotuzumab and it failed miserably as has all other drugs, on this tumor from hell.I am aware of 6 survivors from a trial in Houston, and 1 survivor from a clinic in Arizona.Neither of these facilitys use radiation and chemotherapy.Standard hospital treatment has failed for years and all patients are told that radiation and chemotherapy is there ONLY choice.This information is BOGUS.

 

Wish I could give encouraging news to about successful treatments.  My 27 year old son lasted only 7 months and 5days from diagnosis.  And he lived only 3 weeks after starting chemo CPT and Avastin.  My hopes and prayers are with him and his family.  The Best to him and all.

                                                            Kathy( a very distraught mother

Can you please give me some information on successful treatments for Pontine glioma?  We are in week 6 of radiation treatment and chemo at St Jude.  My son is 13 and had horrible symptoms of this tumor and has gained alot of his functions back but we are concerned that it will only be a temporary fix. We have faith the size of a mountain and know this also is larger than we ever imagined.

Please help give me a glimpse of hope.

Jennifer, Memphis TN for now!

So what do you think is a successful treatment?  We are in the 6th week of treatment at St Jude and are encouraged to see that there are survivors from trial in Houston?  I would like to know what you can share about your experience in Pontine Glioma.

Jennifer, Memphis TN for now!