Small trial suggests the scans might help, but experts aren't so sure
by StrangeTimes on Wed Dec 19, 2012 06:30 PM
I have browsed through this forum and, to my relief, seen that many other people are going through the same thing as me and my family.
These questions have all been asked before, but it would give me such relief to hear from other people - because this experience has been hell.
I am in college, early-20's, and my father was diagnosed with GBM on August 13th, 2012. His speech became slurred about three weeks before diagnosis, and that was the impetus for the first MRI. His situation was particularly complicated because he had two tumors - one inoperable tumor at the base of his brain, and another in the upper left side of his head. He underwent debulking surgery, typical temodar/radiation therapy, and we have been giving him a THC tincture as I read it can be beneficial for GBM patients.
Despite all our efforts (My mother and sister are very involved as well) his MRI two months later showed progression, and quickly after his symptoms began to become markedly worse.
Now he can barely speak because his words are so mumbled and slurred, he is basically paralyzed on the right side of his body, so he is confined to a walker - even though he clearly needs a wheelchair at this point because he can barely manage to walk across the kitchen.
Worst of all are the cognitive declines. His speech has been a serious issue since the beginning, but now it is clear he isn't fully "there." He demands unusual things at all hours of the night (eg. "I..W...aannt...appuull pie!! at 2am in the morning), gets angry and yells obscenities more than a dozen times each hour, and shows absolutely no appreciation for the unbelievable effort my family has put in him. Even worse, he ran three family businesses solely by himself, and we all now have to learn quickly how to take over the companies, learn state and federal business taxes, acquire real estate licenses, learn everything about the companies. That, in itself, is a 100 hour a week job for all of us, on top of the fact that my dad requires 24-hour care. He is also awake every night because he has to pee every 45min, and now has to wear a depends diaper because he has accidents every night.
We just started Avastin, which we are very optimistic about, but it appears he may be allergic to it.
I just want to know if a GBM patient can ever recover their cognitive abilities once they are gone. I have accepted that he will die, and am prepared for it, but the worst part is dealing with this shell of a man who is no longer my father.
All I want is one hour, or even one minute of lucidity so I can say goodbye to him properly.
by StanleyT on Wed Dec 19, 2012 07:14 PM
You can't do all this on your own. Were the businesses doing well, and do you have health insurance cover? In which case there should be money enough to either hire a manager to run the businesses, or carers to look after him, or both. Also if he is allergic to Avastin you are probably running out of treatment options (presumably he has had a course of temozolomide) and it may be time to think about putting him in a hospice.
No, you probably won't get him back, but it is no longer the father you knew. With GBMs symptoms do come and go, however - my wife had flashes of confusion and disorientation, but she was perfectly rational before she died.
by siblingof on Wed Dec 19, 2012 07:21 PM
by CarmensWife on Wed Dec 19, 2012 08:27 PM
Im so sorry to hear about your dad.
You sound like my children, when their father was pretty bad. your letter had me tearing up. I found that when he was given large doses of steriod he became alot more " with it"
You sound very very educated, and really well spoken about this disease. Ill pray for your lucid time with dad. I understand. and Im sorry.
by Larisa on Wed Dec 19, 2012 10:06 PM
by siblingof on Thu Dec 20, 2012 02:36 AM
by NINA78 on Thu Dec 20, 2012 02:51 AM
I did get back my mom here and there in the middle of her battle. She would be herself for a while and relate to life and responsed with smart answers. You might get your dad back here and there but talk to him and tell him whatever u wish. Close to end it was Mom again. My mom was alert and herself close to end and concerned about us that we might be scared to lose her and she had a conversation with a friend of hers asking her to be with us when she leaves us. GBM effected my mother mobility and she had headaches and some short memory lose. But she was herself at the end. Two days before she leaves us she said her last words to me in response to my conversation with her. Then she went to sleep. Tell him everything you wish him to know. Tell him you will be all right and everyone in family as well. Tell of your future and your plan. Tell him not to worry. He understands. He might not reply back. A week before the end my mother was correcting our songs. I am very sorry for all of our loved one, and us going through this painful experience in life.
by jon4156 on Thu Dec 20, 2012 03:43 AM
I'm sorry you have to deal with this at a young age. I know it must be heartbreaking to witness your father become a person you have never seen before and I can relate to the "want" of having him back somewhat normal if even for an hour.
It's important to realize that many GBM'ers experience mood changes as their disease progresses and many other caregivers have experienced their loved one showing anger and/or frustration as well. So you are not alone and what you are experiencing is not uncommon.
With GBM, anything is possible. People have described their loved one being essentially helpless for days and then having a great day (eating, talking) shortly before passing a day or two later. So it does happen and I suppose one can always hold out hope.
In terms of your description that he does not appreciate the effort you family has put into him, I would ask that you don't hold that against him and consider that he may not even be able to comprehend the effort your family is providing. Even if he did, consider how frustrating it must be for him to lose his ability to communicate and perform even the most basic of human functions. Keep in mind that this has hit him as fast, and harder, than it has hit anyone else.
Wishing you, your family, and your father the very best in this trying time.
by lsmith on Thu Dec 20, 2012 02:26 PM
As I read your post & the posts that followed I found myself able to relate to your situation in a different way. My husband was diagnosed with a GBM almost 10 years ago, so we have seen a lot over the past nearly decade. He isn't the same as he was when I married him but all considered he is doing well. (That's why I am on here)
Anyway, my father (a wonderfully kind, brilliant, talented, artistic man) had a couple strokes over a course of about 6 years. They changed who he was, how he related and spoke to people & what he cared about. While it was often very hard for me deal with personally I was even more bothered by the way it effected my daughter who was devastated by her beloved Grandfather's change. (She was in high school & college during the time).
Someone mentioned a comment from a hospice worker. I agree. It isn't easy to swallow but in the end I think it somehow made it easier for me. My father was gone long before he actually died. Your father loves you and your family he just isn't there to show you.
On another note I have heard of people becoming lucid shortly before death when they had not been in quite some time.
Prayers to you and yours...
by StrangeTimes on Mon Dec 24, 2012 05:28 PM
Yes, he is on the standard cocktail. Dexamethasone (which makes him angry), cycles of Temodar, Kumiden, Luvinox injections because he had a blood clot, Lorazepam or Diazepam to sleep at night and a few more (I may be misspelling all these medications but I don't feel up to googling them).
He is already on Hospice. They have given us many of the medications, but some have costed us thousands of dollars.
Fortunately, his companies were successful and we live a good lifestyle, but we aren't super rich or anything. He doesn't want hired help, and for some reason my mom has turned it down for now (because she's terrified we will somehow run out of money a few years down the road) but it is becoming clear we will have to because taking care of him is UNBEARABLE.
The biggest difference between my case and most cases I have read about are the speech problems. His speech isn't just slurred like it was in the beginning, it's literally like someone is trying to talk with a whole apple in their mouth ontop of a severe stutter. You can barely make out a single word he says, even after repeated attempts.
Another awful thing about the situation is it seems to have actually distanced me from my friends and partner. Everyone has been supportive, but you can just tell when people feel like they have to give you some big, helpful speech every time they're around you. After awhile, you hear from friends a little bit less, I think because they don't want to "have a downer" mess up their day. I never make my dad the focal point of conversation for fear of depressing people, but still, I feel friends are almost scared to be around me.
Maybe it's all in my head. But I just want this to end. It sounds awful, but I just want my dad to die now so I don't have to deal with this shell-of-a-human-being making demands of me every ten seconds - day and night.
Like someone says, I already lost my dad. He's already gone, he's just not dead yet.
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