One patient with glioblastoma still alive nine years later
by MJLSK on Wed Dec 12, 2012 11:59 AM
by siblingof on Wed Dec 12, 2012 01:30 PM
by Idyllwild on Thu Dec 13, 2012 02:17 PM
I'm really sorry that your husband is having such a bad reaction to the dexamethasone. I took a high daily dose of dex for several months myself, and it is a nightmare. You might want to see if your husband would be wiling to talk to a psychiatrist. There's no magic cure for the side effects of dex, but sometimes other treatments can lessen them. Sleeping pills/good sleeping practices might help if insomnia is an issue, and antidepressants or antianxiety drugs help some people as well. You might also see if there is any kind of social worker/counselor/therapist available to you. It's going to be a tough road, but there may be some resources available to you. Best of luck.
by scabetti on Thu Dec 13, 2012 06:22 PM
The same thing happened to my sis to the point she was kicking the garage door and screaming outside. We had her ambulanced over along with police to ER and was then placed on 3 antidepressants along with 5 mg Haldol 2 day and was turned into a semicatatonic state. I would have brought in ASAP to psych to get started on maybe low dose of Haldol like .5 mg 3x day something like that to counterract the aggressiveness from our best friend Decadron.
by vickid on Fri Dec 14, 2012 03:17 AM
I can relate to your nightmare, even though daughter has MBC. They gave her this drug to help increase her appetite. She had turned into someone we don't know. Screaming and throwing things is some of the behavior she exhibits. It is an ugly drug.
by plener on Wed Jan 02, 2013 11:54 PM
i realized what glioblastoma stage means---i have a medical background--
i decided that i was going to be myself--so i tapered myself off the steroid came back to reasonable normal---steroid did a lot damaage to me--almost back to normal--swimming. running, rowing, sleeping like a nrmal peson--all who know me tell me they say i look better than they are--i accept the effects of the cancer as best i can but i am going to be peter
by plener on Wed Jan 02, 2013 11:56 PM
take your sell off the steroid it is a a nightmare lots of damage to the body
by SarahGrey on Thu Jan 03, 2013 03:03 AM
I know steroids have many negative side effects - but doctors prescribe them for a reason and you shouldn't just stop them or taper them unless the doctor specifically says so. To taper or stop them can result in severe brain swelling...
I'm so sorry to hear about what you and your husband are going through. Try to remember it is the disease and it's "not him."
As another person said, getting him on an anti-depressant might help. A low dose one just to "calm him" a bit.
Good luck to you...
by LLSTL on Thu Jan 03, 2013 03:38 PM
My husband also had a bad reaction to the Dex. Essentially, a "steroid induced psychosis," after a month of pure he _ _, we admitted him into psych. They placed him on antidepressants to counter the psychosis. I too have children, a 14 year old and 9 year old. He had always been such a gentle person but with the dex, he kicked and shoved me several times. You get to a point where you have to protect the family. The antidepressants also had side effects like Parkinson symptoms but it was better than him telling me that God had told him to kick me.
You must be the advocate, be assertive. Take him to the ER or call an ambulance to take him if you can’t reason with him. Explain you are suspicious he has a steroid induced psychosis caused by the Dex for the GBM. This worked for us but it was the second ER doc before I got through to them. Initially they just wanted to treat him as a psych patient and place him in a padded room. Sorry about this. I know how hard this is to cope with. I still cry nearly daily and it has been a year.
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