My Husband's journey with Glioblastoma

@otis123 so its now been 6 years since this post concerning Optune. Can you share your experience at this time. Did it produce any positive results at all?

Thank you for your time..

Kind regards,
Mike

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!!

Bill has recurrence after 13 months of none. Tolerated chemo well. Peripheral vision was his loss after surgery. Looking at radiation and avastin now. This recurring tumor is much smaller than the original tumor and is on the right side now. He is complaining of more confusion and vision issues. Feels the room is darker. Very depressed about dying now. Any experiences appreciated 😊

@pnf24, I can imagine that your new diagnosis came as a shock. It seems that you've won a lottery you didn't want to enter in getting 2 different types of brain tumors - one benign, one not.

How are you doing with treatment? What kind of radiation are you having?

I’m a little unsure if I’m posting in the correct location, but here goes: In 2002 I was diagnosed with an atypical meningioma in the left frontal lobe. At the same time, my NS found there was a small parasagittal tumor that he advised leaving. Over the years, I have grown a few small tumors that seemed to grow to about 1 to 1.5 cm before they either necrosed or just stopped growing. Last year was the most recent one and me NS suggested I consider gamma knife as it had appeared and grown a bit more than the others during a 2 year period (the length of time between my scans). I was put on an every 6 month MRI schedule. The first last Sept was fine, but on March 29, 2024 a new tumor was found in the left frontal lobe-basically at the site of my original tumor. Because it had popped up and grown rapidly to about 1-1.5 cm, my NS recommended surgery which I had on 5/9/24. Needless to say, I was shocked when the path report came back as possible high grade astrocytoma or glioblastoma pending reports from Mayo and NIH. The final report came in this afternoon showing GBM. I actually started the rad/chemo regimen last week. As of today, I’ve had 5 rad treatments and 7 TMZ. So far and fingers crossed, I have not had any serious side effects. I’m tired, but really blaming it on surgery just a month ago. I told the Neuro APN that I didn’t realize a benign tumor could recur as a malignant one. She replied that it didn’t. They felt thus to be an entirely different entity. Just wondering if others have had this type of BT history?

@manty54, thinking of you as you and your prepare to start chemo and radiation. How are you doing?