Pleomorphic xanthoastrocytoma tumor (Pxa): help

Hola daniellemarie. Te escribo wn español. Veo ahora este post del año pasado. En el blog que modero he reflejado información sobre el tumor. Quimio como la temodozolamida o clinicals trials de braf (dabrafenib, vemurafenib) junto con otros inhibidores podrían ser efectivos...
El blog del xantoastrocitoma.

Thanks for your words. We're on touch.
Any information about advances in the treatment or research of xanthoasyrocytoma interests me.
A greeting.

Hi. I hope your daughter overcomes the tumor. Today there are great advances with the new treatments. In the blog of xantoastrocitoma you can find various information.
I wish the best for you

I'm so sorry to learn about your battle with this cancer, @minnniceguy. I thought you might be interested in reading this journal article about the successful use of BRAF inhibitors in oncology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5977279/

Here's some information about three main BRAF inhibitors Vemurafenib, Dabrafenib, Sorafenib:
– https://www.mayoclinic.org/drugs-supplements/vemurafenib-oral-route/description/drg-20075147
– https://www.mayoclinic.org/drugs-supplements/dabrafenib-oral-route/description/drg-20061178
– https://www.mayoclinic.org/drugs-supplements/sorafenib-oral-route/description/drg-20068145

I'd also like to introduce you to @audrapopp @meg4434 @ecdhope @daniellemarie, who've shared their or their loved ones experiences with these targeted therapies. @minnniceguy, could you share more about the side effects that concern you the most?

Update on my daughter. She started trial in June and her tumor had grown substantially. We had first MRI last Wednesday since she started clinical trial and the results are amazing. The tumor has shrunk a lot so she will continue on with trial. She is feeling pretty good and we are so happy with the results. The fear up to getting results was getting to everyone. The night before I had a panic attack. My anxiety has been just terrible.
Also I would like to update on tumor- when 1st diagnosed she had a PXA the 2nd tumor was called a glioblastoma grade 4. There was one report that still said a PXA but 2 reports, one from Mayo Clinic said it was gbm. I know the odds with this evil cancer. They aren’t very good odds of surviving long. I so hope this trial is the miracle all need who have this evil cancer.

minnniceguy: ref PXA anaplastic astrocytoma grade 3, my daughter (aged 25) has had this for the last 4 years with 4 ops and radiotherapy etc. THE reason she is still with us is because she has the BRAF mutation and successfully took intially Dabrafenib and then later Dabrafenib with Trametinib. We reckon this has gave her at least another 2 years. Unfortunately these drugs are now not working so well so she is off them for a 6 month 'holiday'. But please note she had minimal side effects during this period and lived pretty much a normal life. So, if our experience is anything to go by, this is certainly worth a try. All the best with it, David.

Good Morning.
I would like to show in my blog of xanthoastrocytoma information about this chat.
You give me permission for it?
Thank you.
Javier Hortal

Indeed, you have permission, @javierhortal. I will also connect with by private message.

I had surgery back in june of this year to remove a tumor, I waited 3 weeks for pathology and found out I had a pleomorphic xanthoastrocytoma. They've been watching the area for any regrowth and watching two other tumors on my brain but thankfully everything looks okay.

Maddie, I got your message. My daugther's tumour is in her right temporal lobe, the same as you. This is fortunate since she has had 3 major surgeries but still functions well. Incidentally the picture you posted caused me to do a double-take since you closely resemble a cross between my wife and my daughter! All the best with it, dgruk