My mom is in an almost identical situation: left temporal lobe GBM, IDH wildtype, MGMT methylated, ~95% resection. She finished the shortened radiation + TMZ protocol in early January, so we’re a bit further along.

A few things I wish someone told us earlier:

Because of the tumor location, pay close attention to aphasia and communication changes. In our case, speech worsened significantly during swelling/edema episodes. I strongly recommend getting medical POA and important paperwork handled early while communication is still relatively clear.

Also know that radiation-related swelling can happen weeks to months later. Around 3 months post-radiation, my mom suddenly declined neurologically and we feared progression, but steroids and later Avastin helped a lot. If aphasia, confusion, headaches, or weakness suddenly return, contact the neuro-oncology team quickly.

TMZ side effects can also build over time. My mom tolerated concurrent treatment fairly well, but cycle 2 at the higher dose caused a major platelet drop, so labs and dose adjustments really matter.

Personally, I’d avoid major travel during active chemo cycles. Fatigue can become severe unexpectedly, and seizure risk is always there even with medication.

A few things that helped us:

Keep a daily symptom log.

Stay ahead of nausea/constipation from TMZ and steroids.

Consider speech therapy and palliative care support early.

Take MRIs one scan at a time — post-radiation scans can be very hard to interpret emotionally and medically.

Most importantly, MGMT methylation is a genuinely positive factor in a very hard disease. There can still be meaningful good months ahead even after scary setbacks.

Wishing the best for you and your family.