Anaplastic Pxa

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My 17 yr old daughter was diagnosed with anaplastic pleomorphic xanthoastrocytoma(PXA) tumor in April 2006. Most of tumor surgically removed, concurrent radiation and temodar completed to be followed up with 5 days on, 23 days off cycles of temodar. I'm told this tumor is fairly rare and I'd like to hear from others who have or had this type of tumor. Thank you.

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Jessica1219

i have also been diagnosed with pxa. here is my email address. --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

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joeysmom

my 6 year old son is in the exact same boat. we are also on temador plus radiation. 6 weeks on and 4 weeks off for at least a year. how have the drugs been affecting your daughter? we just started last week

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cakulmom

On 12/21/2008 joeysmom wrote:

my 6 year old son is in the exact same boat. we are also on temador plus radiation. 6 weeks on and 4 weeks off for at least a year. how have the drugs been affecting your daughter? we just started last week

23 year old son, first diagnosed with IV GBM; 2nd opinion weighed in on anaplastic pxa; waiting for 3rd opinion. Starting temodar & radiotherapy next week--same treatment as for GBM. Told it's so rare that there's no real statistical data on how to treat this. Does anyone know anything more?

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paulinna

I was diagnosed with this tumour in October 2006. It was situated in the right temporal lobe. I had a surgery and it was completely removed. Now I'm 21 years old and I'm fine.

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carlatrentz

My daughter also was diagnosed with this,we are hitting brick walls with treatment due to this being so rare they are not sure what to do. What did they do for your son? I refuse to just accept there is nothing they can do.

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6 Posts | Page(s): 1