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Husband - GBM PH 4 - Surgery - Radiation - Oral Chemo - Questions

itismeuc
Posts: 9
Joined: Aug 2011

Good Morning Everyone - My husband had surgery on June 3 to remove a GBM Stage 4 tumor on the left side of his brain. The doctors at Shands Hospital in Gainesville Florida said they got it all.

He is now going through radiation and oral chemo. I know I am so lucky to have him with me. He is so tired from the surgery and now the chemo.

Has anyone gone through this where the entire tumor was removed? Can anyone tell me any survival stories?

I don't know what to expect, or what to do. I work part time, have to, and he is left alone for about 6 hours a day, with neighbors checking on him.

His personality has changed, he can't remember how to dress himself, he can't get his own food, snacks etc. I feel so guilty leaving him and I am so exhausted.

Sleep broken up, we have four kids, three local and only one can help me. She is over at least five times a week for her Dad and Me.

Any suggestions from anyone? I am desperate for people to talk to about the horrible tumor. I want to hear your stories.

Thanks!

Robin

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

Had all of hers removed on 18 September 2009 at MD Anderson.
Her entire left frontal lobe was removed.
She had chemo, radiaiton and temodar..
She had no deficits of ANY KIND from the day of the last radiaition (9 January 2010?) until 6 January 2011.
In between those times, she was nearly as normal as the day before her first symptoms.
Driving on her own, shopping, going to auctions etc.
THEN on 6 January 2011, the floor gave way.
Her cognitive floor that is.
As I have chronicled here before, 3 infusions of avastin to fight off the radiaiton necrosis, got her to wear she could sort of dress herself again.
But her cognitive skills have been devastating.
It is heart breaking to everyday watch her walk around the house with a look on her face that reminds me of Otis Campbell on Andy Griffith.
Putting her clothes on backwards, have to buy "depends", a pack of 20 once every week.
She was fine on 5 January 2011, and on 6 Janaury, I had Otis Campbell.
But, what the heck, she had her entire left frontal lobe removed and has been bombarded with radiaition and chemo!
She's in all the therapy I can get her into to help.
Watch for the effects of the radiaition, it is 50 times worse than the cancer.
To watch a loved one walk around like that, that "Otis Campbell, hit in the face with a mallet" look makes a loving caretaker ANGRY.
Make sure you are going to a top place.
If you have any question, you can't go wrong at MD Anderson, Duke, UCLA, Cleveland..just to name a few who deal DIRECTLY with brain tumors and do a bunch of them EVERY DAY.
If your happy where your at..good.
If the Otis Campbell syndrome sets in on your loved one, any work will be a challenge and my wife has already destroyed a good part of our home.
Now, I am planning on relatives to stay with her until i can retire in 50 days.
Then, I get to be with her 24/7. Can't wait to retire.
Hope you can avoid all of this...
I haven't had a conversation with her since January, but I am getting to be an expert at cooking, cleaning and dressing someone..
Insist upon 8 week check ups! 4 months is not enough.
Although now, after 2 years, I may settle for every 3 months..
The dementia has tempered my enthusiasm for any cancer treatments anyway.

Best of luck!

itismeuc
Posts: 9
Joined: Aug 2011

I am sorry to hear about your wife. I wondered what the effects of the radiation were going to be. I was worried and everytime I ask the doctors tell me they are going to do the best they can. I do trust all the doctors and surgeons.

My husbands personality has changed some. He gets angry because he can't do things by himself. He gets angry because he doesn't know what is going on.

He is also going through chemo, radiaiton and temodar, on decadron, anti-seizure meds etc and so on.

I know it is hard. You must be a strong man to take care of your wife.

I can only work about 20 hours a week, I've got to have some money coming in.

I got my husband social security disability. The hospital filed for it and it starts this month.

It seems somtimes my husband can carry on a conversation, then again sometimes he talks in a different language it seems. He has no short term memory, his vision on his right eye is affected, he will never drive again.

I really appreciate you writing to me and letting me know what I need to be aware of.

Sometimes I think he has gotten worse since the radiation started. He has only been on it for almost two weeks, the chemo also.

I know you know it is so hard seeing our loved ones this way. I wanted to spend the rest of my life with my husband. He is onlly 57 and I am 49. I may have to quit work or ask them to lay me off so I can get unemployment. I want to spend each and everyday with him.

My husband can't get dressed by himself either. He has accidents some also. He can not do the therapy because he is so weak from the radiation. My husband has that "Otis Campbell" look.

Our lives our so different now. It's sad on one hand and then on the other I feel I am so lucky to have him.

My husband walks into things, knocks things over. He refuses to use the walker at home and has fallen a couple times. He is much bigger than I am, he is around 300 and I have to call 911 non emergency for them to come pick him up. I feel so bad for him.

Our hearts go out to our spouses. I will do anything he needs me to do. He is my life.

Please keep in touch with me if you can. Maybe we can be of some kind of help to one another.

I will be praying for you and for your wife.

Good luck to you too!

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

First let me say Im sorry from the bottom of my heart that you have had to drive down this road that we are on too. Its a bumpy road with a lot of curves in it, road blocks too.
My sister has GBM4 dx Feb22 2011. Hers is inoperable. We have had so many bumps, and blocks. Sepsis, infected ports fevers, 3 hospital stays...
Decardon it the key word it your post that makes me write you. It decreases the swelling which decreases symtoms. My sister started decardron a week into radiation. She started having left sided month droop followed the folowing day which let hand weakness. She went to the hospital with in a hour of the onset if this. With in a week or two it all went back to normal. But a big time personality change. My sister is my best friend we havent had a fight sence we were in our early teen years. But she said things to me that cut like a knife, I have cried so many tears, griving for her and our relationship.
She stopped taking the decadron a couple of weeks ago and they put her on prednisone, which she took the last pill yesterday. She is pretty much she self as much as she can be dealing with this. I missed my sister so much those months.
She is tired a lot, has missed so much chemo. I have no idea what is happening with that tumor right now and am so afraid to se the MRI.
There are people that do well. I know how hard this is. I still wake up in the morning and for a second life is normal and then I remember.
The words that they got it all is a good thing. We are here for you, a place to vent and ask the questions your afraid to ask. Keep us posted. My prayers are with you.

itismeuc
Posts: 9
Joined: Aug 2011

The doctors told me this tumor was very common, I had never ever heard anything of it. Now, being at this board I see it is.

I am definately going to ask the doctor if he can be switched to Prednisone.

I don't know how much time it will be before the tumor comes back but he is a very kind and loving soul and to see him like this is heart breaking.

In all the posts I have read it is basically the same thing people go through just different levels.

I feel for each and everyone of you. I will pray for each and everyone of you.

Robin

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

My wife was 50 when diagnosed and I am 56.
It may get to the point where your whole relationship will change.
I had read about this before, but never realized the extent..
Of course I am devoted to my wife and love her as much today as I ever did, but it is not the same girl and as such alot of things change.
This sounds cold, but it's not just a wife that I may be losing if I can't handle her.
It would be a wife and everything that I saved for, for 31 years.
We had these plans and sacrificed everything, no vacations, nothing...
So, when it gets to the point where you may lose your loved one and she take everything else with her to the "home" you look at this battle much more desperately.
Your loved one almost becomes an advesary (and you who know....know)
Tehy are "time bombs" who will stay stable and things will be manageable or get worse at which time you have to send them to one of those awful homes and they take all your money.
So, out of dessperation, you exhaust yourself at fighting NOT the cancer but long term dementia.
It's the dementia that can destroy everything you ever worked for.
The cancer is temporary one way OR the "other"
The extent at which you will keep your loved one adequately grounded cognitively so that you don't lose them and they take everything else down to the bottom like the titanic is herculian in terms of effort.
That's why I say the dementia is WORSE, much WORSE than the cancer.
that's what to work on if the need arises.
The more therapy, the better, the more you engage the better..
When I take walks, I constantly ask my wife questions, we go back and forth counting ..I say 1!..she says 2!, I say 3!, she says 4! and we go to 30 and try to get faster and faster...
"what is your patient number?, who drive us to the hospital, what floor is the brain and spine center on?...constant!
But constantly ENGAGE.
If I lose anything..we'll go down fighting..like everyone else I am sure.

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

That right... We'll go down fighting. Going to fight this thing, no giving up! Fighting all the way. We are in a war and Im standing tall and fighting all the way with my sister... as you are with your wife...

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Amen to that, we can never give up, we must fight. we need to bring more awareness to brain cancer. not that other cancers aren't important but there isn't much awareness out there. May was brain cancer awareness month and I went to walmart and there was a table set up outside to raise money for breast cancer. I got offended in a way i guess, so I went up to the table and mentioned that May was brain cancer month. They looked very surprised that I said something. I am not normally one that would do something like that but with a 13yr old with brain cancer, I guess my momma boots came on and I got defensive. Has that happened to anyone else? Got upset about all the breast cancer stuff?

itismeuc
Posts: 9
Joined: Aug 2011

Our relationship has already changed some. I am not only his wife I am also his caregiver. I have to dress him and help him with his meals and tuck him in at night and bathe him. He doesn't remember that he has to do all these things. It breaks my heart, but because I love him more and more everyday I am there for him. I will always be there for him. He is afraid that I am going to leave him. I have a dry erase board that I use daily for him. On it I put the day of the week, the date and the year. I write where I am and when I should return. This seems to help some. Where the tumor was effects his right eye, his math and his speech. I constantly try and have conversations with him, and there are times when he talks making sense.

No it does not sound cold about losing your wife and everything that you have saved for for 31 years. I understand that. Yes, I imagine you would look at the battle different. I have already put my home, my vehicles, and anything else I have in my name. I have already gotten my husband to sign the Power of Attorney, his will, and his living will. Sounds morbid, doesn't it? These are things that I have to do. As much as I love him I have todo these things for me.

I hope I never ever have to send my husband to a "home." I never even thought about that, it is something that I need to think about.

My husband starts therapy in a week. I really don't know how he will do at it because he is so exhausted from the chemo.

I am so exhausted, all the time, like I am sure everyone is. I pray for everyone here on this board.

Thanks for writing me and letting me vent.

Robin

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