Brain Tumour Survivor

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 Post subject: GBM4 Sydney Dx 31/7/09
PostPosted: Mon Aug 17, 2009 1:48 pm 
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Location: Sydney, Australia
Hi everyone,

First, thank you to everyone for sharing your stories - your stories have really helped me come to grips with being diagnosed with GBM IV.

I'm 37, married to a wonderful woman, and I have two gorgeous daughters (1 and 3).

My story started on July 10 of this year when I had a weird attack - a muscle spasm in my stomach area - it felt like a heart pumping, but I got over it and went about my day. The happened again the next day, so I went to the doctor, who thought it was heart related, and sent me to get an ECG.

I also noticed that I had spatial issues - for example, when reaching for the gear changer, I would miss it by about 20 cm (but it was OK if was looking at it).

I called the doctor on Monday, but she said the tests had come back and I was fine.

I still had the same symptoms on Wednesday, so I went back to the Doctor, who sent me to get a CAT scan. She rang me that afternoon and told me the scan did not look good, and I need to go to Emergency ASAP.

My wife came home from work, and she took me up to the local public hospital (one of the big Sydney hospitals) - at that stage I wasn't sure what it all meant. Did I have 1 hour to live? Did I have a week?

After speaking to the neurologist (who was great), we decided to move over to the private system, and I had my surgery on July 27.

Surgery went really well, and I was walking around the next day.

I got my GBM IV diagnosis on July 21.

I'm due to start my radiotheraphy on August 24.

I've decided to participate in a trial where will be trying Avastin with temozolomide and radiotherapy.

I look at each day as an extra day that I would not otherwise have, and I will do everything in my power to stay around as long as possible.


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PostPosted: Mon Aug 17, 2009 10:33 pm 
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Location: Australia
Welcome to the site. Sorry to hear about your diagnosis. I'm pleased the treatment is going well so far :).

With the radiation, be sure that you are involved in the planning. Just because you are in a trial doesn't mean that you have no say. Ross, who set up this site, sadly had the radiotherapy go wrong for his wife and they did irreparable damage to her pons. Radiation is an appropriate treatment for most high grades, but it needs to be used with care.

Glad that you are being treated in a large city. Unfortunately, due to our disease being rare (fortunate for most) usually they only have the expertise of treating enough cases in big cities.

I'm glad that you are finding the site useful. I believe we have a good balance between survivors like us and family/ carers/ friends. We are all on a similar emotional rollercoaster sharing the good times and the bad. Like you, I have a young child and am determined to give myself the best chance of seeing her grow up :).


Last edited by kenobewan on Wed Aug 19, 2009 11:12 pm, edited 1 time in total.

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PostPosted: Tue Aug 18, 2009 9:44 pm 
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Location: North Qld
Hi Morpheus,

What a rollercoaster ride, and it all happens so quick. I am the caregiver for my 38 year old husband (he was 36 when diagnosed). Let us know how the trial goes, I am interested in hearing about the Avastin as I have asked our oncologist about it, but haven't looked in to it any further.

Take care and know that we are always here to listen if you need to vent :)


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PostPosted: Wed Aug 19, 2009 8:59 am 
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Location: Sydney, Australia
Thanks for your comments kenobewan and montaldi.

The neurosurgeon who performed the operation was quite specific about the radiotherapist and oncologist I see, and I've since met a fellow patient with a GBMIV who came up from Tasmania for treatment by the same team. I've been very impressed by both of them, so I'm happy with the advice I've gotten so far. Having said that, I am doing my own research, so I have an understanding of what's going on. I'm within walking distance of the hospital, so I guess, proximity to treatment is a blessing (and makes things much easier for my family).

Obviously, I'm a newbie to all of this, and like everyone else, I'm doing my best to beat the statistics, but here are a few things I've been doing:

1. I've found meditation very useful for alleviating stress, and for maintaining a positive outlook.
2. We're eating more fruit and vegetables - just to have a more balanced diet.
3. I've started going for walks, and hopefully I'll be able to start jogging again soon.
4. I'm trying to reduce stress as much as possible, though I am still trying to do as many normal things as possible, I'm a great believer in "life is living"

montaldi - I'll keep you up to date with my treatment. I'm in a double blind trial, so there's a 1 in 2 chance that I'll get Avastin - but still I'll keep you up to date.


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PostPosted: Wed Aug 19, 2009 11:27 pm 
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Don't be shy about naming the team if you feel you are receiving good treatment. I haven't met a shy neurosurgen yet ;).

You are doing well to relive and manage stress, not easy in our situation. I focus more on veges, the fructose in fruit is still a type of sugar. I find eating less fruit better for the waist line, especially when I'm competing.

I loved running, I know most people don't. Now that I can't run I had to find an alternative in weights. I like the variety - the sets, reps and different exercises - infinite possible programs. Once again many people find weight training boring - its really about what works for you :).

I am also keen to hear how you get on with the trial. Remember that placebo group can still get a positive result, but I hope that you get the real thing. Ask if they can tell whether there is a fluid build up around your tumour. This water build up predicts a 70% chance of avastin working in a recent study.


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PostPosted: Thu Aug 20, 2009 6:20 am 
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Location: Sydney, Australia
The radio therapist is Dr Michael Back, who again really impressed me - he really gave me hope during the first consultation. He told me exactly what I needed to hear. And the oncologist is Helen Wheeler, who is also very impressive, and very passionate about her work.


Last edited by Morpheus on Sun Jun 13, 2010 5:06 pm, edited 1 time in total.

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PostPosted: Fri Aug 21, 2009 6:39 am 
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At risk of boring people (though I personally love to get as many details as possible from people's personal stories), I did my first yoga class yesterday, and I found it very helpful from the point of view of getting my left side feeling normal. I've been lucky that I have full control over my left side (and right side!), but I do still get some "neglect" in the left side, which just manifests itself as my left arm not knowing what to do when I'm not consciously controlling it.
Also, I'm on 4mg of Dexmethsone each day, which has been making it difficult to sleep. Last night I had the best sleep so far since this whole thing started - was it the Yoga? Who knows, but I suspect it helped


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PostPosted: Sun Aug 23, 2009 6:29 am 
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I was called to the hospital on Friday to do a "mini mental" - a short neurological test required by the trial - ofcourse I was nervous, but I passed it easily, one more step forward,


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PostPosted: Sun Aug 23, 2009 11:03 pm 
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Good result, glad you passed with flying colours.

Hope they get you off the Dex soon, that stuff knocks you around. I was on it until this year.


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PostPosted: Mon Aug 24, 2009 8:53 pm 
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Location: North Qld
Glad you enjoyed the yoga. I started with a Bodybalance class, which is a mixture of yoga, pilates, tai chi etc, but put to music. Only problem was the music was so emotional, I was getting teary in the class! Letting out too many emotions, which was a nice release but a bit embarrassing.


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PostPosted: Tue Aug 25, 2009 8:32 am 
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Had my first day of radio therapy yesterday as well as my first infusion of Avastin (or placebo).

Yesterday I happened to have a terrible headache, which I now realise was my wife's flu - not anything related to the tumour. I was quite worried as I haven't had any tumour-related headaches, not even after the surgery. But I happened to bump into my radio therapy doctor, who confirmed my post op MRI was fine - he shrugged away my concerns with "but we knew the surgery went well"

I was speaking to the nurse running the trial about long-term survivors, and trying to be "scientific" I said I realise that these people were statistical glitches. He said to me: "there's no reason why you can't be a long-term survivor - each of these people would have faced the same prognosis at the outset, and they went on and survived.
Sometimes just a few words can make all the difference.

I woke up today feeling clear headed and hopeful.


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 Post subject:
PostPosted: Fri Aug 28, 2009 8:12 am 
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Location: elliott heads, QLD
Morpheus wrote:
statistical glitches. He said to me: "there's no reason why you can't be a long-term survivor - each of these people would have faced the same prognosis at the outset, and they went on and survived.
Sometimes just a few words can make all the difference.
I woke up today feeling clear headed and hopeful.


wow, wow, read your story and the last comments are so, so true, so always keep those words close to your heart and in your head.
Take care.


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PostPosted: Thu Sep 03, 2009 5:56 am 
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Weird thing happened - my eyesight has returned to where it was about a year ago - it had been getting progressively worse for the 12 months before surgery. I had assumed the lasik surgery from ten years ago needed to be redone (or that I needed glasses). It seems that this SOB brain tumour had been the cause of the problem. I know it's a small step forward in the great scheme of thing, but it's nice being able to see the world again clearly. Fingers crossed that my vision stays sharp (third consecutive day of clear vision today. Doctor yesterday put me down to 2mg of Dexmethsone. Today is week 2, day 4 of radiation treatment/chemo.


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 Post subject: eyesight
PostPosted: Thu Sep 03, 2009 9:03 am 
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Hi,
Glad to hear things are going well for you, our daughter has actually needed glasses in the past few weeks. It was simply her eyesight and had nothing to do with her GBM, so was pleased to hear that, I suppose wearing glasses is part of growing older for some, and hey, thats great to us.
Take care


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 Post subject: Avastin
PostPosted: Thu Sep 03, 2009 11:06 am 
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Location: Perth
I was told by my husbands radiation oncologist that if we take avastin that he cannot be operated on again. Does anyone know if this is true or not....


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