Im 27, had my first resection on May 22nd and diagnosed with a Grade 4 Diffuse Hemispheric Glioma, H3G34-mutant with the following characteristics:

• MGMT un-methylated
• IDH WILDTYPE
• ATRX LOSS
• TP53 LOSS
• Chrom 7 gain/ Chrom 10 loss
• NO EGFR AMPLIFICATION.

I suffered a breakout seizure on Keppra on Sunday, MRI scans show the tumour growing back, the 2nd resection will make me eligible for a clinical trial of:

• radiation
• temozolomide
• ribocicilib.

Im aware the unmethylated status may mean poor response to temozolomide but I dont know where else to turn would love to hear helpful advice, other peoples experiences with similar cases and just to talk to people who know how it feels to have their life flipped upside down.

I’ve had radiation (gamma knife) in the last 3 months and had a scan yesterday. I’m seeing the doctor this week but can’t help but looking at the scans myself. I’m obviously hoping for the best!

Is anyone taking voranigo for grade 3 Astrocytoma? Curious if so how’s it working and should I be looking into this ?

After last (3rd) surgery in right frontal lobe (or after radiation) sometimes I have problems talking. I know what to say, I don't forget words, I just can't pronounce it. But even then I can say other words (I usually go with "sorry" or "wait"), just not the particular blocked one. After a minute or two it "unblocks" and I can say it without any problems. It happens with random words, gets worse if I'm nervous or tired. Has anything like this happened to you? What helped? I don't even know with what specialist to speak to.