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PostPosted: Thu Dec 01, 2011 3:53 pm 
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Joined: Wed Nov 23, 2011 12:16 pm
Posts: 3
Location: Sydney
Craig was diagnosed with GBM grade 4 in Aug 2005 at 34years. He was given the horrific prognosis of 6 mths...2 years max.

I was told it was the beginning of the end, he was told to write a bucket list, quit work and start ticking things off the list! I was 31, and we'd only know each other for a year and neither of us had family close by. His were in the UK. A tough start to a relationship you could say.

Im so proud to say that I am now Craigs wife and we celebrated his 40th birthday this year ( in paris!!) I feel so lucky to have Craig in my life and so proud of what we have been through together. I love him more and more each day and burst with pride when I remember how amazing he was through the whole thing.

To meet Craig now, you wouldnt even know he'd been ill. He's truly a miracle. Craig never gave up work and never wrote that list..although he did buy a motorbike :)

When we were going through our worst we found it hard to talk about it to anyone because no one understood. To this day no-one really understands what we went through. And i hate to think that there are people feeling that way now - which is why I joined this forum.

I just wanted to share a 'happy story' and offer hope to those who are going through this. xo


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PostPosted: Fri Dec 02, 2011 1:30 am 
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Joined: Tue Feb 15, 2011 2:38 am
Posts: 12
Location: Kentucky
WOW! Thanks Tiffany for posting! Awesome! It does my heart so good to read this. My Husband was dx just over 13 months ago now with GBM. The drs here in KY where we live (US) never did give us a prognosis, but they always eluded to "these people with GBM" dont much live beyond 6 months to a year.

I am praying for Kevin (my husband) to beat this and live another 45 more years! He was 46 when dx, and we had been married at the time 21 years. We have 4 kids and we refused to accept this as a death sentence! He had his surgery on 10-28-2010 where they removed "most of it". Did the radiation and he is still on Temodar and is now on Avastin for the necrosis and swelling that has developed. He is doing great! He did go back to work in July and has worked part time since then and we both have a positive outlook on his future, and our future as a family. What a dream it will be when he is one day off all his meds! I feel like some days are so dark, and its true, there isnt anyone we know who really understands all that is going on. A lot of well meaning friends end up putting pressure on us at times to do things when some days all we want to do is stay home, and just be together.

I am so glad your husband has beat this! We need to hear more of these stories and so do the drs. They use old statistics and I believe their bad attitudes about this has caused a lot of hopelessness more so than the disease. When Kevin was told to go home, apply for aide and quit his job he said NO, this is not going to kill me. I know half it is attitude!

Kevin is still here and doing great!

God bless!
Kelly


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PostPosted: Sun Dec 04, 2011 11:08 am 
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Joined: Mon Oct 03, 2011 5:33 pm
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I know I joined this sight a few weeks ago. I just don't remember if I posted anything then or not. So this might just be my first post. I'm almost 6 years post craniotomy, but the battle continues. I was rolling along, everything looking rosey as can be, and I had another seizure, my first in over 3 years. Turns out, the oxycodone I took for a kidney stone was enough to make my brain misfire, and I had taken well under the prescribed dosage. OK, so I guess I just deal with the pain, as anyone knows a seizure is to be avoided. Still, I had to get started on the Dilantin, and as it was a month ago the doc thought I could start weaning, from 300 a day to 200 a day 3 days and then the first morning after taking just 100, I seized. Worst I've ever bit my tongue, too. So there's two seizures in just over 30 days, almost like when I first became aware of the tumor.
Of course we did a quick MRI after the first seizure, but I'm clear again.
I'm curious to know how people are dealing with seizures. I know Keppra is nasty, and Dilantin isn't winning any popularity contests. Anybody like their seizure preventative? And don't say cannabis. It seems alone, that's just a poor man's medicine, and not capable of being dosed, as adequate research is prohibited.


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PostPosted: Sat Dec 10, 2011 2:53 pm 
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Joined: Mon Sep 15, 2008 11:43 am
Posts: 138
Location: Elands NSW
Thats just EXCELLENT news Tiff


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 Post subject: excellent news
PostPosted: Thu Jan 05, 2012 12:07 pm 
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Joined: Tue May 02, 2006 3:33 pm
Posts: 177
Location: elliott heads, QLD
Hi, our daughter was diagnosed in Jan. 2006 with GBM (Grade 4 brain cancer) and was also given the grim prognosis of 3/9 months. Nicole also celebrated her 40th last October and the end of the week she will ( well we all will) celebrate her 6th year of survival.
Very happy your hubby is doing so well as is our daughter.
Have a happy and healthy 2012.


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