Looking for other Glioblastoma sufferers in Perth

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Occasional Contributor

Looking for other Glioblastoma sufferers in Perth

Am new to the site, my husband was diagnosed with a grade 4 GBM (glioblastoma) in February '12 after having a tumour removed from his right occipital lobe in January '12. Everything we read about this cancer is very scary. We are hanging onto HOPE (have only positive expectations!) like there is not tomorrow. I would love to communicate with other sufferers or carer's to compare treatments etc. He finished his radiation/chemo at the end of April we are due to go for post radiation MRI next week and our next round with the oncologists. Praying for a positive result.
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Occasional Contributor

Re: Looking for other Glioblastoma sufferers in Perth

Hi, I'm from Sydney, but my grandfather was recently diagnosed with grade 4 GBM, so I've been doing a lot of reading up on the subject...it is very scary stuff! I felt sick to my stomach when I typed it into google and a page came up nicknaming it 'the terminator' :( I'm glad to hear you're hanging on to your HOPE! Its early days for us so we're just trying to take it one hurdle at a time... All my best to you and hubby 🙂
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Re: Looking for other Glioblastoma sufferers in Perth

Thanks for your reply I really appreciate it. When was your grandfather diagnosed, we only got our diagnosis end of January so also are pretty new to it all and its only now that its sinking in as to what lays ahead. We have our post radiation scans next week and appointments with the oncologists etc, its a little nerve racking to say the least. Our motto is one day at a time and sometimes one hour at a time. Your grandfather is in our thoughts and prayers. Am always at this end of the world if you want to ask anything or just chat. Take care of yourself and each other
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Re: Looking for other Glioblastoma sufferers in Perth

Thanks for your reply I really appreciate it. When was your grandfather diagnosed, we only got our diagnosis end of January so also are pretty new to it all and its only now that its sinking in as to what lays ahead. We have our post radiation scans next week and appointments with the oncologists etc, its a little nerve racking to say the least. Our motto is one day at a time and sometimes one hour at a time. Your grandfather is in our thoughts and prayers. Am always at this end of the world if you want to ask anything or just chat. Take care of yourself and each other
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Re: Looking for other Glioblastoma sufferers in Perth

thank you 🙂 i appreciate it. Its all very new for us...he's had noticeable symptom for about 3 weeks, found out he had 'something in his brain' last week, was diagnosed with Glioblastoma on monday, and had surgery on thursday. So its all been very quick! Still hasnt really sunk in... We're at hospital with him now, he's doing ok medically wise, but he's very distressed and agitated, trying to pull things off left right and centre, had to be restrained at one point 😞 I'm not even thinking about the fact that we're going to lose him at the moment, all i can think of is how terrible he must feel :( Let us know how the MRI went 🙂
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Re: Looking for other Glioblastoma sufferers in Perth

My partner was diagnosed and had his tumour resected in Aug'11. Unfortunately, the tumour is back after 4 rounds of TMZ/chemo and now he's doing a clinical trial. Yell out if you need help or more info. Cheers!
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Re: Looking for other Glioblastoma sufferers in Perth

Thanks Peanutz, we have the post radiation mri and see oncologist and radiologist in the next week then we start on our first round of 5/23 tmz so needless to say that we are praying for positive results from the MRI. This is such a scarey roller coaster ride we are all on, I wouldn't wish this on my worst enemy!! What is the trial your partner is going on to? xoxo
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Re: Looking for other Glioblastoma sufferers in Perth

Hi Hammy, check this link for more info. on the trial http://www.cancervic.org.au/trials/brain/trial.asp?ContentID=nct01475006 It's not for everyone in a few ways: - recurrent glioma - EGFRvIII - first in human trial, doesn't guarantee it'll work :-S - available in a couple of sites: Melbourne and US
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Re: Looking for other Glioblastoma sufferers in Perth

Hi there, we live in Hopetoun near esperance 6 hours south of perth. My husband had his operation last July the size of a closed fist, how he even worked has amazed me, but he was never to return back to work, what they cut out was his short turn memerory, his problem solveing, and his abilitie to show emotions, he had the 6 week of radiation treatment & chemo, then an mri in dec, seemed to be ok, then continued on chemo tablets every month triple dose, then another mri in feb showed us 4 tumors, and that was that, no further treatment just sent us home with maybe 4 - 6 months, we are doing ok, went to Qld to see all our family and have a holiday in cairns, nearly made it home, he had a minor stroke which cause a major seizure, they pumped in the steriods and after 4 days we could come home, that was 2 weeks ago, he has bounced back ok, but we have him on a slow release morphine patch, as he says he is not in pain, but his face has relaxed so much, when you look at him you wouldn't know he is sick, but sometimes that is the problem, gives you that false sense of hope, but I have found out by reading these bloggs, that every case is different, and I think it is great that some people have good results, but our doctor said to us that was it, so how can you have hope. Gary had his operation at Sir Charles gardiner Hospital. Stay positive and be strong, and don't worry if people don't come around, and they won't, it is all about the two of you, Hope things are good, take care.
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