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DiscussionMy Husband's journey with Glioblastoma
Brain Tumor | Last Active: Oct 21 5:20pm | Replies (174)Comment receiving replies
Replies to "Kathie (@otis123), I have a few questions. How many hours a day does your husband where..."
The misleading fact about Optune is when they say you have to "have it on at least 18 hours a day". People think you can take the entire thing off your head for up to 6 hours. It really means that you have to have the TTFields turned on for that amount of time. Once you stick those four transducer array pads on the scalp, you don't take them off for 3 or 4 days. The day you put them on is counted as day 1. So I changed Steve's yesterday (Sunday) and we will take them off to change them on Tuesday or Wednesday. The only time he has the TTFields turned off during that time is to shower...so about 1/2 hour tops per day until we change them. On the day we change them, he has a "free" head for 6 hours. Sometimes it ends up being longer if we are out somewhere, but because he wears it about 23-1/2 hours on the other days, he has lots of banked hours. I remove the arrays carefully under warm water so they won't peel the skin off his head. I have a steroid cream that I put on any red spots after his shower. He says the Optune Cap just feels like he has a hat on all the time. Sometimes it is a little warm but most of the time he doesn't notice. He does love his time with a "free" head though. We aren't sure how long he will use this treatment, but I hope he can wear it until the tumor is gone and we have at least 2 clean MRI's....if we are that lucky! When we go out, sometimes he wears a hat (a floppy safari hat) and sometimes not. It is important to stay out of the sun, because if the sun beats down on his head, it sets an alarm off. This prevented us from walking during bright sunny days this summer. Wearing a hat just makes his head hotter. He gets some stares from people but not as many as you would think. He calls himself "Uncle Fester". He's a Trooper!!