Pleomorphic xanthoastrocytoma tumor (Pxa): help

Hey @Imp1 how is your daughter doing on the clinical trial? My wife has PXA grade 3 and finished her radiation and temodar treatment. mRI shows it recurring and I’m looking for other treatments. She was feeling pretty good during the treatment but now that she’s been off of it for. Few weeks, her initial symptoms are coming back, And in addition she is experiencing constant dizziness. I don’t know what to do about the dizziness. Thanks to all of you for sharing your stories in these feed. It helps to know we are not alone in this. 😢

Bevacizumab, irinotecan, temozolomide, tyrosine kinase inhibition, and MEK inhibition are effective against pleomorphic xanthoastrocytoma regardless of V600E status... You should investigate about these treatments.
Hope everything goes well

Also about dabrafenib and vemurafenib

Thanks Javier!

Hi @lmp1 @audrapopp @csaylor @daniellemarie @javierhortal @minnniceguy @dgruk and @maddymonahan. I'd like to introduce you to the newest addition to the PXA group. Please meet @kodabear, whose wife has grade 3 pleomorphic xanthoastrocytoma.

It has been a while since hearing from most of you. It would be great to get a quick update and continue our circle of support and strength.

Hi all, my daughter is now going through a tough period after her recent major operation. As I might have said before we have some knowledge of targetted therapies so if your tumour, like my daughter's, has the BRAF 600E mutation please do ask about our experience. Also FYI with her oncologist's blessing, my daughter has just started on a treatment in parallel using Sativex (a licensed/approved cannabis based medicine more commonly used for MS sufferers) and CBD oil. The main reason for this is there is emerging evidence (showing promise, but not yet conclusive) that this may limit the growth of some tumours, or shrink them, particularly if taken in parallel with Temozolomide (which my daughetr is also on). By consensus there also seems little or no downsides plus in some cases it might also help with symptom management depending on your issues. Ref this we live in the UK and it was not easy to find how to do this and what to get, but we managed to get it prescribed formally by a doctor. I guess we'll never know whether it is effective or not, since she is on other meds in parallel, but we concluded it was worth trying. All the best to everyone, David.

So good to hear from @dgruk. Thanks for taking the time when you are busy supporting your daughter. When was the operation? What challenges is she (and are you) facing at the moment?

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.

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?

Kodabear, yes of course, please ask anytime. David.