Hi @ejacobs16 and welcome to Connect. You'll notice that I moved your message to this exisiting discussion group where you can meet other members talking about pleomorphic xanthoastrocytoma tumor (Pxa), like @bjh369 @lmp1 @daniellemarie @dgruk @kodabear and others. If you click VIEW & REPLY you will be taken to this message in the discussion and you can scroll through past messages.

This must be so difficult for you, your friend and her whole family. Has she had proton beam therapy?

Sorry to hear that eJacobs. My wife’s situation is similar to David’s daughters one. She is still in the Temodar phase. I hope your friend can find something that works, we all do. All the best, Koda.

@ ejacobs16 hello I am so sorry your best friends daughter and the family have to go through this horrible nightmare. My daughter Danica has just passed January 28, 2019 age 10 years old from PXA grade 3. She had 14.5 hour surgery the first attempt to remove and they could only get 97% out due to it being on a blood vessel. Then she did radiation for 5 weeks and it still grew back. Then she was put on tafinlar chemo for 9 months and it shrunk to nothing but her next mri which she had every three months came back that it had grown back. We had to have a meeting with her team from Oakland children’s hospital to see what her next options were and the plan was a biopsy and try to remove what little they could since it was growing from vessel area and to make sure it had not changed. Then they would start her on two other chemos together. So October of 2018 Danica has her surgery set and days before that she had several quick scans and mri’s because she was getting nauseous like she had in the start of it all. Well scans showed bad news and it had doubled in size and she ended up having a 10.5 hour surgery and her removal was 75% we went home grateful she was alive and had no complications from another long brain surgery. But inside we New our options were down to this last treatment that were the two chemos. Sadly to say Danica’s rumor was out of control. We were sent home on hospice from a check up after being on the treatment for 2 1/2 months and nothing changed with medications. Our world crumbled and Danica’s pain at home was not able to be controlled we ended up back in Oakland children’s hospital for her last 8 days of her life and she passed. We caught with her for two years and it has torn me and my family up. I pray for your friends child and the family for strength love and a miracle with this kind of cancer because it is very rare and has no cure yet. Breaks my heart that our children have to go through this. 💔😭🙏🏻