glioblastoma treatment

I was 49 when I got my diagnosis in 2014. Treatment plan was 6 weeks of Chemo (Temodar pill) and radiation. After that went into a "maintenance " phase requiring 400mg of Temodar daily, for a 5-day period every month, with monitoring of my blood platelet count monthly. The negative side effect of Temodar is you become a laxative junkie for a few days as the drug is effective, but also slows up the plumbing in one's body.

This phase lasted for 5 years (normal period is one, two at a max. But my platelet counts were consistently good, so I told my med team "if it a'int broke don't fix it") Now I have an MRI every 6 months to maintain awareness.

Negative side effects experienced were: (short- term) brain swelling due to the radiation, which accentuated the effects on me. Was prescribed steroids to mitigate the effects. (Long-term) blood clot developed in my left calve requiring me to take a low dose blood thinner (Eliquis) for the long term. Additionally, I take a low dose of an anti-seizure med (Keppra) twice daily.

The biggest key to success for me was ATTITUDE. I was determined to not slip into a permanent "pity party" but follow the advice of my med team and take charge of fighting it. Not every day was/is a holiday, but I'm here, I'm up and about, and that's the way I'm living with it.