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Pleomorphic xanthoastrocytoma tumor (Pxa): help

Brain Tumor | Last Active: Dec 9, 2023 | Replies (132)

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@dgruk

A summary of where we are. My daughter (who is 25) had her 4th operation on her right temporal lobe at the end of August, lasting 11 hours! She has recovered from this in a physical sense but as a result now has a hemianopia (loss of half her sight) which is a big challenge. She is also quite tired pretty much all the time, presumably because of the Temozolomide. Yesterday she developed a sore throat so my wife is currently at the docter's with her and fingers crossed that she doesn't need antibiotics because, as we understand it, she may need to go into hospital to have these intraveneously (which none of us wants). The other worrying thing at present is that she was supposed to start on Avastin (another melanoma approved drug) last week but there are issues with getting approval for this. Our insurer initially said no, presumably because it is off-licence for brain tumours. So as I mentioned it's quite hard at the moment. But my daughter's attitude is great and that factor alone makes it so much easier all round. ATB David.

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Replies to "A summary of where we are. My daughter (who is 25) had her 4th operation on..."

hi David,
Thanks so much for posting your experiences. I’ve been trying to find others who are going through this too, but there aren’t that many. My wife currently is battling PXA and is about to have her 2nd operation. The radiation and temodar didn’t seem to do much. Looking at other options. I will ask about what your daughter has used. Mind if we keep in touch?