Mental Deterioration

Oak · Regular Joined: 30 Mar 2009 Posts: 17

My father had a Grade IV GBM, he had surgery to remove what they could (And this is when we got the diagnosis). He's just finished up radiation and chemo, but instead of getting better he is getting worse. The tumor is on the right frontal lobe and his left side is very weak sometimes to the point of not being able to walk.

But the most troubling for me is how is mental capacity is diminishing. This is a part of it I never really considered. I knew when the tumor regrew (As they assure us it will, and probably soon) there would be degredation in his mental abilities.

I don't suppose anyone here has any helpful advice on how to deal with this in a grown man who may or may not realize his diminished capacities?

For those who saw my earlier post, after genetic testing of the tumor it was found he did not qualify for the CDX-110 study. So we are sticking with conventional treatment for now.

The hardest part is we thought there would be an uptick in his abilities post chem/radiation treatment before they restart the chemo. But so far it seems down hill with new seizures and all. He is on anti-seizure meds. But they were going to tapper some of those off and after a few rather bad days of serious seizure problems reupped the meds.

Pasavat · New User Joined: 06 Feb 2008 Posts: 5 Location: Illinois

I'm so sorry to hear of your Dad's diminishing mental capacity. My sister Mary had GBM IV and we witnessed the same thing in her. She would light candles and forget about them, leave things cooking on the stove, and try to drive. We dealt with that by hiding her car keys and by always making sure she had a "visitor" with her. The good thing was that she wasn't able to argue with us because her short-term memory had been so compromised that within minutes she would forget she ever had the idea of driving or cooking in the first place. Her tumor was also in the right frontal lobe. She suffered from left-sided weakness as well. We would do crazy things such as lie on our backs in the living room and do leg exercises as if we were riding a bicycle. She thought that was hilarious. Humor was a big help.

We had to become resourceful in diverting her attention. One thing that worked effectively was having her watch television. She especially enjoyed Sesame Street (she was 50 years old!) because the scenes changed so rapidly and it took no concentration whatsoever. I also read children's books to her. The wording was simple and the pictures are often interesting to look at. Mary enjoyed looking through family photo albums as well. Her long-term memory was still sharp. She couldn't remember what she'd done that morning, but she was able to tell stories about pictures from the 1980s when she looked at them.

Seizure meds cause fatigue which, from my experience, can add to the problem of mental alertness. Just try to keep a peaceful, calm environment. Loud noises and abrupt changes in surroundings can be disturbing.

Hugs to you, friend --- I know how hard this is for your family!
Pam

brainman · Posted: Thu May 21, 2009 7:04 am Post subject: Re: Mental Deterioration

Oak, I am very sorry that your father's condition is deterioration faster than expected. My mother's mental status also deteriorated very rapidly but she did not have any treatments. I think that I have lost some of the metal edge I once had. It is hard to remember things. I can't learn as quickly. It is almost impossible to read and keep track where I left off from one time to the next.
I am not sure what you or anyone else can do about it. Just help your father as much as you can to have the best quality of life possible.

You and your father are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
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Twitter: @JimHawkins54

Oak · Regular Joined: 30 Mar 2009 Posts: 17

Update:

Things continue to decline, fairly rapidly. A series of seizures have resulted in renewed Todd's (spelling?) Paralysis on the left side. The tumor is on the right frontal lobe. Instead of any improvement post radiation/chemo ending all we've had is setback after setback. It is rather disheartening.

There's no great wisdom to help with this I think, it's just something that has to be coped with. I say cope because I've sort of come to understand there is no way to truly understand this kind of decay and decline. As someone who's grandfather had a slowly declining mental state (Disagreement about if it was alzhiemers or not) I thought this would be more like that, but instead it is so rapid. Things that could be done yesterday are no longer doable.

The question I get the most is 'how long does he have'. The problem is there is no answer to this that I can see. Days, weeks, perhaps at most months but that seems very very unlikely with his rate of decline.

There is an MRI scheduled for Friday but it is too soon after the end of the Radiation I fear to get good results from that. I was told they should wait 6 weeks after radiation for the first MRI but due to his declining status they are doing it several weeks early. I don't know what to expect from that test.

brainman · Posted: Wed Jun 03, 2009 3:28 am Post subject: Re: Mental Deterioration

Oak, unfortunately, what your father is experiencing is typical for a lot of people with a GBMIV. In a way, my mother was fortunate. Her mind remained sharp and alert until the last few days. Then she just started to sleep more and more.

I agree with you; it is likely that your father only has weeks or a few more months. Of course, no one knows for sure. Try to help him have a good rest of his life... however long that life is.

You and your father continue in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Oak · Regular Joined: 30 Mar 2009 Posts: 17

Update: The friday MRI showed no sign of the tumor regrowing at all.

This is a mixed blessing it seems.

The brain damage (And mental deterioration) is likely from the radiation, they say now. And more over they expect it to get worse for the next two weeks or so and /then/ level out. They say it is permanent brain damage from the radiation treatment most likely. Add to that his strokes and partial paralysis and it is a bit of a nightmare.

It is heart wrenching to see someone reduced to his mental state. No idea of his life expectancy now. If the tumor was regrowing they'd have a better idea. At this rate I think his liver will go from the drugs before the tumor kills him.

brainman · Posted: Wed Jun 10, 2009 7:18 pm Post subject: Re: Mental Deterioration

Oak, it does sound like a mixed blessing. I to have had some major deficits due to surgery and radiation therapy. My mental status is off; my speech is impaired; my right had is weak; I have a increasing difficulty reading and making sense of what I read... I know the feeling of a mixed blessing. It is not easy to keep on keeping on will so many losses. After each of my MRIs, I have the relief of knowing that it has not grown back with (how can I say it???) a sense of disappointment maybe?? that the tumor has not returned.

On the other hand, as long as we are living we have the opportunity to enjoy life... to what ever extent possible. Your father may not be able to enjoy everything that he once could. I think that it falls to you to help him by being his "dream factory". Find out what he would like to do with whatever time he has left and then try to help him do those things.

Oaks, you continue to be in my prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Oak · Regular Joined: 30 Mar 2009 Posts: 17

Thank you for the words, Brainman.

Unfortunately the seizures have gotten so bad that my father is now in a neural ICU as they try to figure out what to do next. Even though the tumor hasn't regrown at all, the seizures have left him paralyzed and incoherent (And perhaps a bit irrational, hard to tell). They basically maxed out the anti-seizure meds, but... no luck. Still lots of seizures. (and by lots we're talking over a dozen a day, and these are full blown seizures)

So... not really sure what is going to happen next. I honestly don't know what the long term effects of so many and prolonged seizures is on a person. I don't know what damage the seizures themselves might be doing. And if we can't manage them, I don't know what other options there are at this point. Lots to take in and little information at the moment. I studied up on Brain cancer, but never really thought we'd be facing seizures as the number one issue in his treatment.

I just hope they (the doctors) can figure out a way to at least reduce the number or severity of the seizures, I would very much like to have at least a little more time with my dad when he could talk to me again, and make sense.

brainman · Posted: Sat Jun 13, 2009 7:37 pm Post subject: Re: Mental Deterioration

They still have not gotten control of his seizures?? Sad

I am so sorry to hear this. I know you wrote that a few days ago so things may be different now. Keep us updated.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Oak · Regular Joined: 30 Mar 2009 Posts: 17

Seizures have gotten yet worse again.

They have put him on Phenobarbitol (Along with several other drugs who's names elude me at the moment but two different anti-seizure meds, one starts with a D and the other I think is a V?)

After his second dose he's now had to be intibated (Put on a ventilator)

And yet the seizures seem to /still/ be going on.

The horror of this is the tumor hasn't re-grown at all, but the doctors are theorizing this is a result of the radiation treatment (Which basically causes brain damage after all). There is no sign of swelling causing this so they are not entirely sure how to stop it if seizures are breaking through even this level of medication.

He's in an ICU and on a ventilator, and there is still no sign of tumor regrowth. I never imagined this would be where we would be at this point.

He obvoiusly can't talk right now with being on a ventilator and usually he can't even open his eyes, but sometimes he has some ability to react by squeezing his right hand. (His left side is totaly paralyzed now by the seizures).

Oak · Regular Joined: 30 Mar 2009 Posts: 17

Tuesday Morning Update:

Still seizing, meds have been upped. Not really sure where we go from here. The doctors talk about wanting to reach a blood level of '25' for the phenobarbitol before making the next decision. But so far he's seizing more than when he was first taken to the ER Friday, even with all the meds.

Additionally he's having problems maintaining his blood pressure with all of the medications, so they have to give him something for /that/ which in turn is making his heart beat irregularly.

Finally, his urine output has started to decrease. This worries me because it could be the drugs but it is also one of the signs of 'very bad things' starting.

At this point I think it would be a miracle if we could ever stop the seizures, and no one at the hospital is willing to talk to me about what we do if after all of this he is /still/ having the seizures. They say 'just wait and see if we can stop them'. No one wants to answer the 'then what?' question. I had to out right corner one of the neural guys and try to force an answer from him because they were all evading the question. I take it that this means there aren't a whole lot of options left but no one wants to tell me that outright at this point.

Finally no one can tell me what quality of life he might have left even if we could magically stop the seizures at this point.

It is a hard time. We thought we were doing the right thing by having the radiation and chemo treatments, because we were told it would lengthen his life statistically. And I suppose if we had the same choice to make over again, we would. You have to play the odds, but it is so painful to know that the tumor has not shown any signs of regrowth but the radiation treatment has caused these seizures.

Can't live on hindsight I suppose.

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