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Unusual behavior GBM

deamama
Posts: 1
Joined: Sep 2004

My father was diagnosed with glioblastoma multiforme and underwent surgery 4 weeks after I joined his business. I am suddenly responsible for 3 different locations and apparently have a HUGE mess to clean up. I had noticed that he walked funny, slurred his speech and had temper outbursts months prior to his diagnosis, and was aware of his forgetfulness. I am now discovering that there are a multitude of delinquent accounts, some that could include potential lawsuits. I need to find evidence of similar experiences with the brain tumor. If you have any stories of uncharacteristic or bizarre behaviors, particularly regarding money management, this could help in my discussions with lawyers. I have repeatedly read how the tumor can effect the personality, but this is an extremely vague statement, and I could use some examples. It is apparently not enough to watch a seemingly healthy and active 65 year old man left completely immobile virtually overnight, but I have had my financial advisor taken from me as well.
Dea

nanc721's picture
nanc721
Posts: 29
Joined: Oct 2003

My husband was diagnosed with GBM on Mother's Day of 2003. He did not show any bizarre symptoms until a year later, when the cancer came back and caused brain swelling. Then he had a stroke. But yes, now he is doing strange things, like forgetting conversations from 5 minutes ago, agreeing to sign for a motorcycle for our 19 year old (which he NEVER would have done if he was in his right mind), and forgetting how to get places. When the swelling is down, these symptoms are not as bad, and the symptoms are certainly dependent on where the tumor and swelling are, but I too, have heard that people do weird things with this cancer. Good luck to you.

NancySpecht
Posts: 1
Joined: Feb 2005

I can understand your questions. We dealt with the same situation with my father. He was diagnosed with a golf ball sized tumor (glioblastoma multiforme) in Feb of 2003. We actually thought he had had a stroke, he had been complaining of lots of different things for a year prior to his diagnosis but when he no longer could use a calculator or read a paper and started forgetting words, we INSISTED on a mri and other tests. We got the news the day of the tests when they admitted him to the hospital and scheduled him for brain surgery. It wasn't apparent until we started doing taxes and such for the business that my father ran with my brother that he had been having problems for quite a while. His accounts were past due, some were paid in advance, we are still to this day trying to figure out the taxes and such. We never associated the episodes of what we thought was heat exhaustion, alergic reactions to something or any of the other things he was going through with a brain tumor. It wasn't until he could no longer read and or add or call us by name that we thought he had somewhere along the line had a stroke. When they gave us the diagnosis we were all in shock! I wish it had only been a stroke. My father went through chemo, radiation and prior to that he had part of the tumor removed and a plastic disc with chemo drugs in it directly placed next to the tumor. He did well for a while. I wish I could say he beat the tumor, but that is not the case. We lost the battle on July 22, 2004, my son's 13th birthday. The only thing I can say is that he wasn't in a lot of pain, he was able to enjoy his family up until the last two weeks at which point he became bed bound. He passed away early in the morning at home with my mother and my oldest daughter, his son and his best friends there with him. I suggest you contact the american cancer society, they have so much information and help available. I know that my father experienced a lot of the same things as your father.

guarddog
Posts: 1
Joined: Jul 2011

My wife suffered a seizure on June 14, this year. She was diagnosed with a left frontal lobe GBM grade 4. They resected it on June 16, removing 80%. Prior to this, her behavior became odd back in April. She was attending a business function in Arizona. Upon her return, she became distant and apathetic. She stopped going to work. I questioned her actions and she just blew me off. On several occasions, she railed at me over minor things. She became thoroughly enraged. She stopped paying her credit cards, car payment and the mortgage. She was placed on unpaid leave from work. She stopped bathing. She sat fpr hours at her laptop at home, unable to login. She would sleep for hours on end, as much as sixteen in one day. I couldn't get through to her that her behavior would cause her to lose her job. She thought they wouldn't dare fire her and blamed everything on her supervisor. I was actually working towards divorcing her, then the seizure happened. That was almost a month ago. Tomorrow, I'm taking her to Huntsman Cancer Hospital for her first radiation treatment.

Beckymarie
Posts: 358
Joined: Aug 2009

It is ver frightening when a spouses behavior so drastically changes and you have no idea why. My husband was diagnosed in March 2009 with a GBMIV, inoperable. Before the tumor was diagnosed he double paid all the bills leaving a zero balance in the account. He was a CFO so this was so out of character for him, would leave the water running in the sink, shave half his face, left the car running out in the driveway all night. I was so frustrated and angry with him. It breaks my heart now....I had no idea.

connsteele
Posts: 232
Joined: May 2011

Unusual behavior is what alerted us to something going on with our son (dx AA3 on 4-18-11, inoperable). He lived in Virginia and we live in Ohio. We couldn't reach him by phone all weekend, which always worried me as he is a Type 1 diabetic who lived alone. On Monday night I finally reached him and he started talking weird, about seeing bugs all over the place, at work and at home. When I asked him how big they were, he said the size of lizards. Whoa! Then the next day, he talked more about seeing bugs everywhere, that long with slurred speech got us thinking that we better leave in the morning to see him. Later that night, we talked to him again and said that he had been at the billiard hall and had to be driven home. I asked why, and he couldn't really say. So, we packed up the car and dog in 15 minutes at 11:30 pm and drove all night to get to DC. We arrived at his apartment at about 8 am and what we saw was awful. He had a black eye, bruise on his forehead, and a big gash in the back of his head, which he still insists was caused by a spider bite. His apartment was a compete mess, unlike him. Stuff strewn everywhere. When we asked why, he said he was trying to get to the bugs to kill them. Then in the bathroom, there was blood on the side of the tub and and floor, plus a bloody Tshirt in the sink. We think what happened was he had a seizure in the tub, fell, and hit his head. He said he didn't remember Saturday: went to bed Friday and woke up on Sunday. Of course, we took him to the ER, and that's when a cat scan started this whole nightmare. In talking with one of his coworkers, she said that on the Friday before he talked about seeing bugs. And that he had a spider bite. She thought it was weird too. And the most bizarre behavior was on Monday night, he rented a $350 room at the Crowne Plaza in DC in order to get away from the bugs in his apartment. He also threw away a book bag (with who knows what was in it) because it had bugs. For the two nights before we arrived, he apparently didn't sleep, stayed awake all night because of the bugs. He even drove at 3 am to the 24-hour IHOP to get away from them. So, you can see that this disease is so unlike any other cancer. We are just grateful that we got there in time before anything more terrible happened to him.

johngiustino
Posts: 26
Joined: Apr 2011

I was determined to have a brain tumor on October 2, 2010 and had surgery just days later to remove an egg-sized tumor that was diagnosed as GBM. My neurosurgeon guessed it had been growing for at least a half a year, which was consistent with the timeframe of my strange behaviour and various medical issues before October. Back in March 2010, I went to my primary care physician to complain about frequent headaches. He concluded it was probably just sinus headaches and prescribed a nosespray. I went back in April and told him that I was really, really tired all the time, even taking naps during my lunch hour at work in my car. I told him I could not sleep well at night either. He asked if I felt depressed and I told him no, which was true at the time. My doctor had me take a sleep apnea test in June/July which came back negative. I figured that maybe that the stress I was feeling at work was getting to me and tried not to think much of it. However in August/September my feelings of stress at work started to increase. I could come home from work in the afternoon and tell my wife that I hated my job (previously, I had loved it for 9 years straight) and that I was thinking about quitting. I was also getting these strange thoughts at work just sitting in front of my computer. The best I could describe them as were static-filled, mixed up feelings of anger and euphoria that would make me blank out for a few seconds. Also at work, I would get really sullen or angry in meeting (I was typically very mellow). I was getting ready to go back to my doctor to tell him that I was feeling depressed.

Physically, I was also getting some strange symptoms:

1. When I would brush up against something with my left arm, I would get a strange sensation of pins and needles, instead of pressure. (my tumor was found on the right side of my brain)

2. In late September, I would get very painful headaches that would wake me up at night. For months I was popping vast quantities of Alleve to stop the pain night and day.

3. My left eye started to droop in late September

4. I kept missing, despite efforts not to, certain keys on my keyboard with my left hand. For example, I kept messing up on my login/password which had always been automatic before.

5. It became increasingly difficult to concentrate when talking to people and sometimes my mind would just blank out for a few seconds before returning to the conversation

The day of my diagnosis, I left work because of a painful headache. On the way out, dropped something without knowing why from my left hand. I also went to the bathroom and on the way out could not remember how to buckle my belt, much less sense where I had to place my hand. On the way to the ER in my wife's car I was listening to the radio and the voices turned to a strange static-filled jibberish. A MRI that evening confirmed I had a brain tumor. I will never forget the feeling I got after the ER doctor leaned over my bed and matter-of-factly said "you have a brain tumor". I don't blame him, there is no good way to deliver that news....

EDClarke
Posts: 5
Joined: Aug 2011

How are your treatments going? My husband is 26 and just received a diagnosis of a GMB Multiform Level IV. We are just starting our fight and looking to learn from others...

msomawas
Posts: 22
Joined: Aug 2011

So far David is doing well with his treatments. We are almost 2 1/2 weeks in. He gets his radiation 5 days a week and the chemo pills 7 days a week. He has not been sick from the chemo. He is wiped out tired from the radiation. This is to be expected. He goes for about a week pretty much like normal and then crashes. His white count is good. They do take pictures every other day to be sure the radiation is going in the right place, but they have not told us anything so far.

David's tumor was found as the result of ONE headache. No seizure, no blurred vision. One headache. I was never so shocked in my life. I am sure you were devastated, too. How was your husband's found?

We have been hopeful because his tumor is fairly small, but we really won't know anything for a while I guess.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Have been where you are at. My sister was fine had a little dizzy spell and passed out Feb 22 the day my world came crashing down... MRI= GMB 4. Where is his and how small is it?

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

hits the 2 year mark on August 26th for GBM.
I couldn't tell any great personality change until about a year after the last radiation treatment.
I suddeny noticed that she vegetated in front of the TV ..
Still does
Just lay there with her Charlie Brown security blanket and stare at teh TV..
She used to talk to me all the time, interrupt my news shows, but no more.
I sure wish for those days again for our house is a tomb.
She isn't interested in her housework anymore and I do most of it...sometimes my sisters help.
I do the cooking, cleaning, shopping..everything.
I water her flowers..
At first, I thought she was using all this for an excuse not to do any work anymore around the house..
I just don't think this is the case.
If you really insist, she'll come in the kitchen and make a fruit bowl for dinner or something small.
I haven't had any real convestion with her since January.
But, it all started with noticing that she just stared at the TV and wouldn't start or carry on conversations anymore...

msomawas
Posts: 22
Joined: Aug 2011

David's tumor is in the right frontal lobe. His is inoperable as it is too deep, is very close to the optic nerve and the spinal fluid. It was small - about the size of a nickel. How big is your sister's and where is hers?

One thing that discouraged us was how LONG it took to get into treatment after the biopsy. It was one month to the day of his headache that he got radiation the first time.

He's having short term memory issues - he was locked out of his office twice in the same day and I had to go let him in, locked us out of the house, lost his car keys, locked himself out of the house on Saturday. It is weird how he seems to be doing things all surrounding keys, but I am having a hard time getting him to carry his cell phone too.

He is 2 1/2 weeks into treatment, this probably isn't going to improve, but I hope to get him to exercise with me some to see if it helps. He is also terribly irritable, and exhausted, poor thing.

We remain hopeful, I am holding on. I hope for the best with your sister.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

My sisters cancer is in the right parietal lobe deep in the white matter.It was 1.8 x 2.2 cm. Also on the small side. She had a little dizziness that would come on for a few seconds here and there her doctor didnt do anything about it then on Feb 22 she was on a walk and didnt feel well and sat down and passed out for a few seconds the hole time she was leaving messages on my phone trying to get a hold of me. When I answered a ambulance was pulling up and she was so upset someone call 911. She was totally with it. She wouldnt get in and someone gave her a ride home and I took he to ER. The starting of the worst nightmare ever. About a week in to radiation she started having some weakness and couldnt find keys etc too. The brain was having swelling so she was starting on decadron. The weakness cleared up in a couple of weeks. We caught it right away so it was able to go back to normal. We havnt had a very good time with this. She has been in the hospital 4 times with sepsis now she has something wrong with the head of her femor bone. Its causing her so much pain that she cant walk on it. She has a blood infection and they dont know where its coming from. They are not sure about the bone thing infection vs necrosis vs bone cancer it looks a little like each of the them , but not sure so they are doing a bone scan and sending it off to a expert. Hopefully its fixable.
As far as the brain cancer we dont even know what is up with that, we have had to miss so many treatments because of problems. Dont even know if its grown. Had a scan 3 weeks after radiation ended which was a little to early, the tumor was smaller on one side and bigger on the other. Have not had another scan. We are suppose to have one at the end of the month.
Hoping things go well with David, my prayers are with you.

msomawas
Posts: 22
Joined: Aug 2011

I am so sorry about your sister. David has been so fortunate so far in that he has had little problems other than fatigue and irritability. He has been doing some strange things such as leaving lights on all over the house, losing keys of every description and locking himself out of the house and his office, but I am sure this is from the fatigue and the steroids. He is taking Decadron twice a day. He has not had any more pain that Tylenol will not handle since 7/3. Our state health plan nurse says this is a good sign, but I don't know how she would know that since she hasn't seen any of the pictures. David asked the radiation tech yesterday what happens to the CT scan pictures and x-rays they take 3 times a week during treatment since no one has told him whether the treatment is doing any good.

I am so sorry your sister has been in the hospital so much. I know you have to be frantic with worry. I will continue to pray for both of you.

Marty

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Thank you for the prayers. Im having a pretty bad day today left in tears from the hospital. I try not to take things personal but its hard. They over drugged my sister yesterday. Im a nurse so I have a hard time not putting my two cents worth. I asked the nurse to talk to the doctor about the amount of morphine they were giving her. The nurse told the doctor I said she was hallucinating. That isnt what I said at all. Now my sister is mad at me. She thinks Im against her. Nothing I can said made a diffrence. My sister is my very best friend she has always been there for everything. We dont ever fight. But she just stopped trusting me.Im so careful about everything I do or say these days.

msomawas
Posts: 22
Joined: Aug 2011

I get having a bad day. I feel like I am going to fall apart about 90% of the time and David is not having the problems your sister is. I cannot imagine being in your spot. I do know that the meds do make them irritable and more likely to get angry. David snapped my head off this weekend over the volume on the radio. That is unlike him. We never fight, he never raises his voice. I do know how you feel, and I understand the nightmare you are living. I go to sleep every night thinking maybe when I wake up everything will be like it was before July 3 when I wake up only to find it isn't when I wake up. Worst experience ever and he and I haven't even really started yet. I pray constantly. I pray the tumor is shrinking, and they haven't told us anything so far. I know he is scared too. Not many places you can go and find anybody you can talk to either. The local brain tumor support group meets in Durham, but it is around David's tratment time - which is coming up. Oh and David cannot take the Avastin - they may use it later but for now - no. Anyway, hang in there. I'll be checking back here to see if you are ok and to get an update on your sister. What is her name?

Marty

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I will send you a e mail.Im kind of careful of what I write on here.

msomawas
Posts: 22
Joined: Aug 2011

How is your sister? I hope she is doing ok. We are 2 1/2 weeks into treatment now. David is exhausted, but ok other than the things I said above.

gbm0106
Posts: 3
Joined: Aug 2011

Sorry for your news. Your best bet is to identify a facility that is recognized as a regional brain tumor center. For me, that was UCSF. I'm not certain I'd still be alive if I'd made the decision to use my local hospital. I'm an extremely lucky survivor, having had my tumor resected from my right temporal lobe in January of 06 and standard care until a 3rd seizure in June 08. That MRI indicated no tumor recurrence, but why the seizure? No way we'll ever know. After I learned the prescribed anti-seizure med; Keppra, has a known side effect of irritability, I've been ingesting THC daily since July of that year. Most of the ingestion is inhalation. Yes, I smoke marijuana now and believe it is primarily responsible for me being alive. There are many who believe cannabis may be the cure for cancer. I'm using it and I'm alive when statistics suggest I've outlived 98% of my peers. Hmmmm?
I've just joined this board, and don't remember what I read that inspired me to join, but having seen your request, I thought I'd respond. Good luck.

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