Saturday, 30 April 2016

Could Optune Novocure cause confusion?

My husband started novocure on april 12th. He was intermittently slightly confused then but very minimal. His tumor volume was 9 oz on February 27th. He has been getting worse by the day to the point now where he can no longer be left alone. He is confused all the time (with some periods of good orientation) and sleeps 80% of the day. His tumor started on bilateral frontal lobes. I know this is probably related to his tumor but could Optune be making him more confused?? That's when he seemed to get worse. Amazingly he has no headaches and is only taking 1mg dex daily plus boswellia and turmeric. Can you share your experiences with optune? My husband and I are both 33 yo and have a 7 and 10 yo. I have to keep my full time job as a RN so I can continue to provide for my family but its just killing me to see my husband declines day by day. We are all overwhelmed and trying to adjust to the changes. My brother in law and his wife, and my father in law are taking turns watching my husband while I'm at work. Please keep us in your prayers as he has a MRI scheduled for today.
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4 comments:

  1. zerobaddog30 April 2016 at 06:13

    My wife(stage IV GBM) also had confusion with Optune. We would turn the unit off and she would would "clear up" after a couple hours. Her Oncologist said he had never seen that side effect before. It became such an issue that we decided to stop using the unit. She is currently on Keytruda and Avastin and seems to be tolerating those treatments quite well. We do not plan on going back to the Optune device due to this reason.

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  2. Jaki30 April 2016 at 15:00

    I am sending positive thoughts and prayers for todays MRI.
    We have no experience with Optune, however my husband became intermittently confused a few weeks after starting Avastin. Always hard to know if it's the tumor or something else. He will have another MRI next week, so stressed out til then.
    I'm hoping the best for you and your family and for everyone else having to go through this.
    Jaki

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  3. Anonymous1 May 2016 at 15:26

    My mom was on the optune, and we also noticed a very serious decline and have taken her off the device for the past week. She is less confused and much more alert.

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  4. Unknown21 June 2018 at 15:25

    My husband has stage 4 glioblastoma, on the optune, took it off last night cause he was soaking wet ,,it's like someone poured water on top of his head ,today is the first day ,he is,actually functioning, he is so ALERT and not confused, staying off optune for a,couple of days to c how he does ,he's on temdar

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