My brother has grade IV GBM, and has anger issues

mosey · Regular Joined: 10 Dec 2006 Posts: 15

He was diagnosed Oct 8th 2006, and operated on the next day. His tumor is in the temporal lobe. It had grown to the point where his entire left side was experiencing continual seizures/tremors, he was unable to stand, and his short-term memory was greatly affected.

Since the surgery, he has not experienced a seizure, but has had to discontinue the anti-seizure meds due to anger/hostility/rage reactions. At least we thought it was the meds (the most recent being Keppra), but his over the top anger and aggressiveness is getting now to the point that his primary caretakers (myself and a friend) are at times afraid to be around him. He is wound up from the moment he gets up early in the morning until he falls in bed late at night.

He is now in his third week of radiation and Temodar chemo in addition to taking a steroid that is probably adding to the rage responses.

Has anyone else had to deal with an angry and potentially violent relative going through this hell? I have cut my work days down to 2 days per week in order to be with him as ordered by one of the oncologists, and care greatly for him and his well-being, but am concerned that if the anger continues to escalate, someone could end up getting hurt.

Any thoughts? Thanks for reading!

Sammict

Hi Mosey,

I'm so sorry to hear you are having such a hard time with your brother, the diagnosis of this disease is hard enough to deal with on it's own. This must be very distressing for you.

I do know that personality changes are "part of the package" with GBM and some patients do display signs of aggression and violence. My dad used to get very confused and agitated and would become very "determined" to do things that came into his head...things that weren't "normal" behaviour for him and there would be no stopping him sometimes - It was very upsetting.

Our medical team prescribed Rivotril to my Dad to help with the agitation and I know it can be used for aggression as well. It comes as a liquid and you give drops under the tongue. Dad was on 5 drops every couple of hours to begin with and then it increased to "as and when needed". It did calm him down, but it also made him quite drowsy. Still, it was better than seeing him upset and working himself into a stressful state.

It's worth asking your GP and giving it a go, I'm suprised they haven't prescribed him with something already. You shouldn't have to go through being scared for your own safety, demand some help!

My thoughts are with you, let me know if you manage to trial the Rivotril.

Best Wishes
Sam

mosey · Regular Joined: 10 Dec 2006 Posts: 15

His physicians decided to go with Ativan on a prn basis, and though he doesn't take it as often as some around him would like, he seems to be feeling less angry - still very irritable though because of the low dosage.

I also like the Ativan because it has anti-seizure properties, and my brother completely discontinued the anti-seizure meds due to the reactions.

Thanks again for the response.

Smile

mosey · Regular Joined: 10 Dec 2006 Posts: 15

Sometimes I think I can't take it anymore, and know it's just temporary exhaustion, but want you all to know that reading the threads on this site has helped me very, very much. Thanks for your loving stories and examples of strength. It means a lot.

promises · New User Joined: 03 Jan 2007 Posts: 5

My husband's tumor is in the left temporal lobe. He also has mood swings and periods of anxiety. Ativan is great for this and doesn't drug him out. One thing to note, if a treatment can be found that will shrink the tumor, the neurological effects can go away. My husband was put on Avastin and CPT-11 and it shrunk his tumor to nothing. His MRIs where clear for over a year. Neurologically, he was back to normal throughout that entire year. No confusion, no mood swings, no anxiety. He even went back to work. We had a recent regrowth so we are going to switch out the CPT-11 for CCNU, but we are staying with the Avastin for the time being. Another friend went on the same treatment and all of his neuro problems went away as well. Keep up the hope and God Bless!
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mosey · Regular Joined: 10 Dec 2006 Posts: 15

I hope everyone is, well, doing well.

My brother doesn't seem to have anywhere near the same level of anger that he had when I posted originally. He had his post radiation MRI last Thursday, and met with his chemo doc this morning. The chemo doc told him the results "were concerning" and that there is evidence that the tumor is continuing its attempts to spread.

Tomorrow, we meet with the radiation oncologist and the doc that originally did the surgery. May find out more info then, but at this point, it sounds scary.

Peace all

promises · New User Joined: 03 Jan 2007 Posts: 5

mosey, we had regrowth after temodar, but had a great deficit-free year with clear MRIs with Avstin + CPT11. I highly recommend you consider it along with whatever other options your onc comes up with.

Blessings!
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Seek first to understand, then to be understood.

mosey · Regular Joined: 10 Dec 2006 Posts: 15

but my brother is very stubborn. He would rather deal with the effects of the disease than the side effects of further treatments. He has made that perfectly clear, in his loud, angry way!

I appreciate your response, and will let you all know what happens next with the info I get tomorrow.

peace.

promises · New User Joined: 03 Jan 2007 Posts: 5

mosey,

Well, this decision is definitely his to make. I hope he is able to get through the anger to make the best decision for himself. I've seen folks get so caught up in the drama of the anger that they've made decisions that were consistent with that drama, only to realize the true impact at a later time. Once the decision is made there may be no turning back. But if that is what he truly wants, stand by him and help him down whatever path he choses.

Blessings,

Valerie
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Seek first to understand, then to be understood.

mosey · Regular Joined: 10 Dec 2006 Posts: 15

My brother was told, and shown the MRI, that another piece of the tumor has popped up next to the old one that was surgically removed, but this one can not be removed as it is close to his brain stem.

They are going to do cpt-11 one time monthly along with the usual Temodar dosage, and see what happens.

What a drag.

Thanks for your input folks!

promises · New User Joined: 03 Jan 2007 Posts: 5

I hate to ask, but did they mention the Avastin? That's the angiogenesis agent that was pretty much responsible for my husband's tumor shrinkage.
_________________
Seek first to understand, then to be understood.

mosey · Regular Joined: 10 Dec 2006 Posts: 15

but for some reason, the medical oncologist said that he didn't believe that Avastin was helpful, and wanted to stay with Temodar with the added 1x per month CPT-11.

I am very happy that the combo prescribed helped your family, and am just hoping that this works for my brother.

I was thinking that maybe it had something to do with his intolerance of other meds?

I don't know. I really don't. I'm just spinning my brain in circles right now.

Thanks again for the interest, and I wish you and yours the best!

modestocliff

Mosey,

I wish you and your brother well. I am finding out just how hard this is. I came here for some answers to my wife's anger/agitation which is increasing off the charts. She had 80% removal of Oglioastrocytoma 2 weeks ago. Ended up very weak on the right side, is currently challenging the professionals in the rehabilitation hospital and has not even started radiation/chemo yet. I am tired and depressed but will not give up. I found some potentially hepful info here. Thank you and God bless everyone.

Cliff
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Cliff

mosey · Regular Joined: 10 Dec 2006 Posts: 15

my brother was told weeks ago that the surgeon had decided he was one of the 20% of GBM patients who are "lucky" enough to have growth in an area that would permit another surgery. This was said months after we were told that the regrowth was in an area that would be inoperable.

He had the second surgery last Thursday, and it went unbelievably well. He drove home from the hospital (a three hour drive) on Saturday. Incredible.

He is still exceedingly irritable, but his memory is at least temporarily seemingly improved.

I am having a difficult time now believing anyone's forecasts regarding time left, or likely symptoms, or even likely side effects of medications. As has been written many times here, each case is different.

All we can hope for is the best, and that is what I hope for all dealing with this.

Peace

ksplat

Dear Mosey, Sorry to hear about your brother's brain tumour. Such an awful diagnosis for anyone, especially when your brother is also suffering with neurological problems stemming from the tumour. My brother is 45 yrs young & was diagnosed in Feb with GBM IV. The past 6 weeks he has gone downhill real quick. Terrible seizures & tremors on his left side & a Grand Mal seizure needing hospital. Tumour is inoperable as it's on his brain stem. After biopsy in Feb treated with Temodal & radiotherapy. He was told 2 weeks ago they would have to stop all cancer treatments & were only able to treat the seizures. He has been referred back to his neurosurgeon who has debulked the tumour this week, Mark is yet to regain sensation on his left side. We are hoping he will get the use of his left leg again. He just wants a little more quality time to have a holiday with his wife. I am interested in this drug you & others have mentioned "Avastin and CPT-11", they seem to have had good results for others on this journey. I wonder what they're calling it in Aust? Once again prayers & a hand of friendship to you & yours. Cheers, Angie.[/b]
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
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