My brother has GBM IV-looking for advice & support

ksplat

I have been reading this forum on and off for a couple of mths now. I have been both saddened and inspired by your stories of loss & courage. My brother - Mark 45yrs young - was diagnosed with GBM IV the week after Valentine's Day 2007. It's an inoperable tumour (on his brain stem) and he's been given 12 mths. I am so afraid and sad for him. He's never been sick a day in his life and is now undergoing radiotherapy 5 days/wk & was taking Temadol for 3 wks until he had his 1st Grand Mal seizure last Thu. He spent a few days in hospital and the Dr suggested the tumour was sensitive to the Temadol and has taken Mark off chemo until after the radiotherapy. The Dr also prescribed an extra anti seizure drug called Epilem (I think). Anyway tonight Thur (a week later) he's had another seizure (not grand mal) and is in hospital again as I post this message! His tumour was 10mm x .5mm in Feb at the time of his biopsy. After his 6 wks of radiotherapy the Dr will do another scan and check out if the radiotherapy has helped or not! Mark is married with 3 grown up children and 2 grandchildren (babies). The Dr inferred the grand mal may have been a result of the wrong chemo being taken or alternatively it was the electricity in the tumour escaping and travelling across his whole brain. We pray this doesn't mean the tumour is increasing in size whilst receiving treatment for it. We won't know until he has his next scan. We want him around for a lot longer. We are praying for more time for my darling brother. I am trying to remain positive (like Mark & his wife) but I'm having alot of trouble staying strong & fearless. In the early days we talked to him about getting a 2nd opinion but he & his wife didn't want to offend the neurosurgeon. We wanted him to travel to Sydney & see Dr Charlie Teo who is a "maverick" in this field of medicine and operates on inoperable tumours. Dr Teo doesn't promise a cure but he does give his patients more time! He has been mentioned in this forum previously. Any advice & information would be greatly appreciated. Hooroo, Ksplat.
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Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brunette

Hi ksplat, Im sorry to hear about your brother.

I lost my mum last month to grade 4 gbm, she was diagnosed in August 2006.

Please feel free to email me if you want to, I understand totally how you feel right now.

I wish I could say that there will be a happy ending for you, your brother and family. But it would take a miracle. Im so sorry.

Best wishes, Jen

brainman

Hi ksplat,

I lost my mother due to GBM 8 years ago. She only lived two month after diagnosis. I am so sorry about your brother’s experience with GBM. Just one question: 10mmX.5mm is a very small cancer. Is it inoperable because of its location? I will be praying and thinking about you and your family. Keep us posted.

If I may, let me respectfully disagree with Jen… Jen is an example of the best. She has not let the death of her mother destroy her. Jen is an active member of this forum and has poured out her soul to help others facing GBM. I think that is the only way for us to survive… by turning our grief into something beautiful like reaching out to others. It does not take away the pain. However, it does help each of us to live despite the pain of loss we feel. I encourage you, ksplat, to also find some positive outlet for your grief. In this way there can be a happy ending for all of us... including your brother.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Derek

Hi ksplat,
I would seriously think about persuading your brother to go to Sydney and see Dr Charles Teo, what has he got to lose?
My wife too was told by a neurosurgeon in Newcastle that her tumour was inoperable, and sent her home with a "watch it and see" approach.
I have read the literature, and having a scientific and surgical back-groud myself, it makes sense to always try surgery.
As you said yourself, there is no guarantee of a cure, but Dr Teo regards every week or month that someone gets beyond what they expected as a bonus.
Obviously surgery here is not curative , so a good oncologist will also be needed as well.
Best wishes, Derek

ksplat · Posted: Tue May 01, 2007 5:34 am Post subject: Thanks for comfort & support

Dear Jen & Jim, Thanks for your kind replies to my 1st posting. Thankyou for your thoughts, prayers and support of my brothers' illness. He has since been taken off radiotherapy as after a catscan yesterday they found the tumour had grown & the tumour is not responding to treatment. His doc has told him they can only treat the seizures now. Apparently, today talking about a neurosurgeon debulking the tumour to relieve the pressure on his brain and maybe a different type of chemo drug. My brother is even talking about going interstate to see a renowned neurosurgeon in Sydney. I hope he hasn't left it too late for the 2nd opinion. We are praying for a miracle every day. I am planning to get all of the family organised to have a week away together at a little beachside holiday spot for some quality time.. Take care all & many thanks. Hooroo, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

lifeonthefarm · New User Joined: 01 May 2007 Posts: 1 Location: WA

I am so sorry about your brother. My brothers tumor was huge and they didn't find it till the late stage. Saying he would be living up to 3 months. that was last year in April. He had surgery removing the huge mass, and had months of radiation and his chemo was stopped a couple months ago. he was paralyzed on one side, and learned to walk again, then last month he had a seizure or stroke, and is paralyzed again, and learning to walk again, he is not as positive this time and weaker, But I am thankful he is still here and I know of two others who are on their 3rd year, some having surgery more than once. My brother can't have surgery again, it is in a bad area, but it has stopped growing the last few months. So I feel there is hope for your brother to be here longer than what they may tell you? You just never know? When I first found out about his tumor I was hurting so bad and I still do hurt I am just trying to keep strong, but I am keeping hope and hoping this time he will again walk, he doesn't have the fight in him like before, we are praying, I will pray for your brother too. You can write to me anytime.
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I have a brother 52 yrs old with a brain tumor

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