Young adults with Diffuse Intrinsic Pontine Gliomas.

Hi, I'm new to the boards and was DXed with a DIPG 02-21-07 and was told I had a year to live... two tops (coming up on my 5 year "cancerversary" WOO!!! =).  I'm hoping to find another case like mine since the majority of the cases are either children or geriatric patients.  I have been looking for other young adults with DIPG pretty much since I was diagnosed but have yet to come across one.  I'd love to have someone that can relate and maybe we could compare notes as to what has worked for us, what hasn't, possible causes, etc.  Any help would be greatly appreciated!!  Thanks =)

-LONDON-

You know who could really use your encouragement right now is userlizdaly  . her son was just diagnosed with a pontine glioma, she is new to this site, but not far from you!

Cathy

Her user name is "lizdaly". Sorry

On Sep 05, 2011 11:35 AM cathy68 wrote:

You know who could really use your encouragement right now is userlizdaly  . her son was just diagnosed with a pontine glioma, she is new to this site, but not far from you!

Cathy

Thanks Cathy!  I messaged her =)

-LONDON-

My name is Brad and I'm 22 years old and I was diagnosed on may 26, 2011 and just went to my last follow up three days ago and there was a new spot they are unsure if its tumor related have any of your mri's comeback odd? also is there any alternative/ clinical therapies?? i'm tired of sitting back waiting for the inevitable and not doing anything to prevent it?

My husband was diagnosed in January 2011 with DIPG at age 33.  He completed radiotherapy in April 2011.  He's been pretty stable.  Neither of us want him to do chemo if we can help it.  We've been looking into Ruta and DCA (university of alberta).  Have you already come across these?

On Sep 04, 2011 6:49 PM LondonFD wrote:

Hi, I'm new to the boards and was DXed with a DIPG 02-21-07 and was told I had a year to live... two tops (coming up on my 5 year "cancerversary" WOO!!! =).  I'm hoping to find another case like mine since the majority of the cases are either children or geriatric patients.  I have been looking for other young adults with DIPG pretty much since I was diagnosed but have yet to come across one.  I'd love to have someone that can relate and maybe we could compare notes as to what has worked for us, what hasn't, possible causes, etc.  Any help would be greatly appreciated!!  Thanks =)

-LONDON-

Hello, 

My daughter is 22 and was diagnosed with DIPG shortly have her birthday in March.  can you tell me what treatments you've had?

Thanks,
Ed 

he did 30 days of radiation monday-friday while taking dex twice a day lsst june when the tumor was first found (when found it was about 10cm or 4inches). in February it was still skrinking which was awesome news. In May there was a spot on the scan which they were unsure of so they waited 6 weeks did anothrt scan and they see activity on in thr brain where the tumor is so they started him on temozolomilde which he takes 5 days out of the month. this wednesday he goes to get his second dose.

Hi, this is the first time to the board, and my brother was diagnosed with a stage III pontine glioma @ the end of September.  We are in the 2nd week of radiation, and they want to introduce chemotherapy to be aggressive with treatment.  His symptoms are pretty bad right now, but hes a fighter.  I believe in God, and am feverently praying.... He is the same yesterday, today, and forever, and if hes raised the dead, I believe he can remove cancer!! Praise God.  Is there anything that my brother can do to alleviate symptoms?  Please reply

Hi LondonFD,

 I also have a pontine glioma. I was diagnosed in Nov 2008, aged 27, and treated with radiotherapy. The tumour shrank significantly but not completely, and I continue to have 6 monthly MRI scans to monitor the situation. Each time I get my results I am told it has remained the same size, and is possibly slightly smaller (although I am often told by my consultant to take this with a pinch of salt). 4 years on from treatment (Jan 2009) and I continue to live my life. From what I can work out from researching online, pontine glioma is rare in adults but often behaves differently to it's usually much more aggressive progression in children. Why that is I have no idea! Here's hoping for a new cure!

Gala x x x