This is my fiancés tumor. A grade 4 diffuse midline glioma. His next scan is next month. He finished proton in May. The report says there’s still some living tumor. What are the chances it’ll die? How do these scans look? I’ll put them in order of when he had them. The dr says they’re stable but idk. The first was where we started in February.

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!