One patient with glioblastoma still alive nine years later
by velcrobaby on Sun Mar 23, 2008 12:00 AM
I'm new here and thought I would post and ask for any advice you can give me on how to deal with this.
My mom was diagnosed on 1/26/08 and had a cranio/biopsy on 1/31. Her tumor is in the left temporal lobe and she has 5 more radiation treatments left and is on Temodor at the same time for 42 days.
She has been hospitalized 3 times since, once for a seizure and twice for psychotic episodes of erratic behavior, hallucinations and the like.
She is on decadron and now ativan and haldol for the behaviors but I guess I'm frustrated in that we can't seem to find the right medication to keep her stable. She has taken 2 falls in the last 3 days and won't slow down or rest until she is ready to collapse. She wants to shop and buy everything in sight for no reason and is doing things that are so out of character for her that it frightens me.
by mbg53 on Mon Mar 24, 2008 12:00 AM
by cozymel on Mon Mar 24, 2008 12:00 AM
On 3/23/2008 velcrobaby wrote:I'm new here and thought I would post and ask for any advice you can give me on how to deal with this. My mom was diagnosed on 1/26/08 and had a cranio/biopsy on 1/31. Her tumor is in the left temporal lobe and she has 5 more radiation treatments left and is on Temodor at the same time for 42 days. She has been hospitalized 3 times since, once for a seizure and twice for psychotic episodes of erratic behavior, hallucinations and the like.She is on decadron and now ativan and haldol for the behaviors but I guess I'm frustrated in that we can't seem to find the right medication to keep her stable. She has taken 2 falls in the last 3 days and won't slow down or rest until she is ready to collapse. She wants to shop and buy everything in sight for no reason and is doing things that are so out of character for her that it frightens me. HELP??? :(
My husband began showing dementia problems about 4 months ago. The tumor has continued to progress so we are now on hospice but at this time we had chemo for 2 more months.
At first his symptoms were wanting to get up at all hours, shower and shave and go to work. He was belligerent. His short term memory was so bad he would shave 3 times within a 15 minute period. At this time he could walk unsteadily and probably was capable of starting the car and driving towards work but in his right mind knew he should not drive. So I hid car keys and argued with him a lot. I continued to work but he did not anymore after this started. While at work some days I would received numerous calls from him asking me to pick up McDonalds on the way home, etc.
The anger subsided and he transitioned into not recognizing me, thinking I was his ex out to drain his bank accounts, or when I would take him for a blood draw he would believe I was going to abandon him at the blood draw business. It was worse in the afternoons and didn't happen every day. He would tlhink I (as the ex) had done something to his wife (me). One day he fell and could never get up or walk again on his own. He called the police and told them I was holding him hostage. The police came to check it out and all was worked out,
During this time most nurses and docs were telling me that yes, BT patients will do this unfortunately and there is not much you can do. I kept insisting we try again to find meds that would help. What we have him on now is Seroquel 200mg at night, and 50 mg in the morning. Plus in the early afternoon I give him 1mg Ativan and another 4 hours later. This works. He is calm, recognizes everybody and any fears he comes up with are "soothe-able." If I am late with the Ativan, he will start saying we need to buy a shotgun for protection, or that he has agent orange on his hands etc.,
by velcrobaby on Mon Mar 24, 2008 12:00 AM
by Mazzo on Mon Mar 24, 2008 12:00 AM
I started a similar topic one week ago. And have a complete different approach after some days dealing with the situation. My wife transition from natural kindness to salvage aggressiveness happened within a week. She had two surgeries done in the left temporal lobe, and after the second she got a mild paralysis on the right limbs, that slowly progressed (seven months) to an almost complete stiffness. Lot’s of ups and downs on this road. In a moment she was even able to draw and write using her right hand, but this function is lost for three months now.
Initially I addressed the mood changes to decadron doses (she was taking 12mg a day), but it turn up to be extreme, with lot’s of screaming in a high pitch I never saw before. Moreover, she developed a need for bathroom visits (she in incontinent by now), reaching tens of attempts daily. After some guessing and discussion with physicians, all they agreed that changes are much more likely to be brain damage caused by tumor progression. They explained to me that under the motor cortex there are some structures that took an important role on the limbic system – responsible for a lot of human emotions, including aggressiveness.
Taking this in consideration, we also started Seroquel, currently 100mg a day, a drug used for a great variety of behavior abnormalities. Definitively it helped, however in any situation where she is put under some stress – visitors, medical appointments or even conversation; it seems to trigger these deep primitive feelings. Strangely despite her previous misplaced talking, when cursing and aggressive, she can express her toughs very clearly – even when they are delusions of someone stolen her medicines or cheating on her.
Other important (and quite obvious) trigger I discovered was pain and discomfort. In the beginning of this crisis period, she was so extreme I felt I would not be able to handle it without medical assistance in situ. Scanning through her exams for three days before, we discovered a urine infection that was literally driving her nuts. After treating it she eased considerably.
I know it sound silly, but I still look for something that could bring her back, at least tampering this aggressiveness without knocking her off. Here and there, with extreme patience I can extract her thoughts, commentaries and sometimes even some good humor.
by alsaman on Mon Mar 24, 2008 12:00 AM
I sent you a private reply to your post.
Mazzo, my heart goes out to you, I know seeing your spouse going through this has to be so difficult for you. Being a caregiver is so hard and I only hope that I can handle this road ahead of us.
I want to thank you for the private replies and for the responses on here, I don't feel so alone knowing that others are going through much the same thing that I am with my mom.
by Nina1956 on Mon Mar 24, 2008 12:00 AM
My Mom, who passed away from GBM last week, experienced aggressive behavior as well after surgery and while she was undergoing radiation and chemo. She started effexor (a SSRI) and remeron with ativan as needed. It took 6 weeks for the drug combo to take effect and calm her down, but after that, she was back to her old self mentally, but was going downhill physically. The psychiatrist said that the drugs take 4 to 6 weeks to kick in.
You are not alone. This disease is horrible and painful to watch a loved one go through. I am glad that my Mom's suffering is over.
Keep strong and best of luck.
by flfrog on Mon Mar 24, 2008 12:00 AM
My dad 54 diagnosed 11/07 went through the same thing, it's heartbreaking to watch and live through and my prayers are with you. I am my dad's sole caregiver with my 21 mth old daughter and I almost had dad committed on Friday but waited until we saw a new psychiatrist the following Tuesday and they put him on Depakote and we're not sure if that's what helped him but we never miss a dose. He is 100% back to being my daddy. The first psychiatrist had him on Haldol and then Zyprexa. The Haldol had severe side effects and the Zyprexa didn't do anything. Dad was manic, up all the time, talking non stop and didn't have a good grasp on reality. He would say and think the craziest things and we several times got into screaming matches where he would bang his hands on the wall.
The worst is not being prepared for that behavior. They told us when we left the hospital after surgery of GBM removing 90% of right frontal lobe tumor that he'd have a problem with initiation. We left made decision as a family and about 3 wks later two days before starting radiation / chemo he snapped. The dr's thought it was the steroid which they reduced with no effect and then started with the mental medicine stating it was tomor induced. I've come to realize that the brain is so fragile and there are so many side effects from surgery, medicine, radiation etc that no one can really tell you what's going to happen because they don't know.
Dad has low blood pressure now 90's over 60's and has severe joint pain and pain in one thigh and no one can tell me why. I've asked the primary care dr, the oncologist and the neurologist and they all act like it's no big deal and for dad to just take more pain medicine. I'm hoping the neuro onc. who is very thorough gives us more informaiton on that Thursday.
Sorry for wandering off into my own situation but hang in there. Some days are harder than others but once they are normal again you don't really remember how bad it was it's just a blessing to have them back and more days with them!
by Kimba0612 on Wed Apr 09, 2008 12:00 AM
I'm new to this site and thought I would respond. My mom was diagnosed 3/28/08 with GBM IV from a cranio/ biopsy done on 3/21/08. She spent 3 weeks in the hospital in which she was very pleasant and peaceful. Prior to finding out she had GBM she was undergoing treatment for manic depression/ boderline bipolar and Schizophrenia since 2004. She would have rampages out of this world!! She would be dillusional and curse me and my aunt out and call us everything but a child of God!! She would break things, throw things and try to hit us sometimes. This didn't happen all of the time, but when it happen it happened BIG! Back in February 2008 she cursed me out so bad that it still hurts when I think about it. It seems like after that episode her symptoms (of what I know now as GBM) progressed. She became more disoriented and the confusion worsened, we took her to ER on 3/15/08 and our journey begun.
Lastnight was the first time she showed any signs of aggitation. She started crying and then yelling that she wants to die. She has not slept in 2 days and has this thing about going to the bathroom all night. This morning (4/9/08) she tried to walk out of the front door 6:30 am...me and my husband jumped out of the bed and ran to stop her and she snapped!! On our way to work, we drop her off to my aunt's house she went off on me and my aunt because we told her she needed to take a bath before the home nurse arrived. I had to leave to get to work and when I called my aunt to check on her she was throwing her clothes in the toilet!! She says we are trying to control her like she is a child!! I understand this is because of her illness but right now I'm SO SO tired!! I'm worn out because I have been dealing with this behavior before we even knew it was GBM. I read one of the above posts and saw that 200mg of Seroquel with Ativan worked for them. Before all of this GBM stuff, she was on 900mg of Seroquel daily!! The Dr.s at the hospital lowered the dosage while she was hospitalized but I think we may need to increase it again. I just wanted to share my story and to let you know you are not alone in this fight!!
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