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.

@kodabear , I’m sorry to hear about your wife. I don’t get on here often because I stay busy. My daughter is doing very well. She is on the maintenance part of the clinical trial right now and her tumor is stable. She has Avastin every 2 weeks and the clinical drug once a month now, (dsp-7888)is the name of the trial drug. This is a type of immunotherapy. It can affect your heart and kidneys so she has to be watched closely with EKGs and blood work but so far she has been ok. Radiation and tremador did not help her at all. Also when she was 1st diagnosed they called her tumor a PXA but when it came back 6 months later it was GBM grade 4. With the Avastin you can’t have surgery at least a month after taking it because of risk of bleeding. I hope this helps you. As of right now she is doing so great and of course we know that can change any day but we just take one day at a time and hold our breath in between MRI. She has them every 2 months.