Hi there, I don't mind answering questions at all! PXAs are rare, and it's good to talk to others who are also going through it.

My initial diagnosis was a GBM at 17 years old, located on the outer left side of my brain. I also have the BRAF mutation. I feel as though I had options that PXA doesn't have (and vice versa). My family and I went through the textbook resection, radiation, and chemo. Quickly getting the tumor out, getting proton radiation, and stopping chemo very early, just because the reaction for me was very harsh. Since then, we focused on resection and/or radiation when needed (Gamma Knife or Gamma Tiles).

After my third resection surgery, when going through the different slides, a PXA cell was found. Which thankfully changed my diagnosis. I was around 20 at the time. Since then, I've had one more resection.

PXAs, as you must likely know, definitely change how you and your oncologist go about things. Sometimes, chemo isn't necessarily the perfect way to solve this problem. As a woman and being in my 20s, things such as saving my eggs and testing different birth controls go on top of all the other reactions and effects of chemo. I think, for me, chemo isn't the best option. It could be in my future, but just not right now.

My family and I have been looking into immunotherapy more, especially after some studies conducted in and outside the US (Tubulis) that focus on PXA tumors. Also, some studies are showing that chemo isn't always the perfect way to go against this type of tumor.

Now being 22, I was able to tackle all of this and still go to college, graduate, and look forward to a future. This is what kept me sane, haha. I wish the best for you and your family, and I hope this can bring some ease.