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peanutz
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November 2016
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May 2012
Yesterday my partner was doing well. He even helped me cleaning up in the kitchen for the first time in the past few months. Today he has been feeling tired and in the afternoon he told me he felt really weird and all a bit shaky while in bed under doona. I hold him and played with his head for a bit and he felt a bit better. We thought it might be the new chemo he's on. I let him sleep and around 6 p.m. I went to check whether he wanted something to eat. He couldn't say anything apart from yes, no, probably, well, not yet, don't know. I want to get him to a hospital but as usual he disagrees. He could still walk. I'm worried it could be stroke but he had an episode like this before from brain swelling but not to this extent from my memory. It could be seizure as well, right? He doesn't take any anti-seizure drug at all, just dex and some blood pressure pill. Fingers crossed. If he's not better by tomorrow, I'm taking him to the hospital.
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May 2012
Hi Cathy,
Sorry to see you in this situation. You are young so you have a better chance to fight this. I'm surprised you had 2 surgeries in the past 12 months. How many months after the 1st surgery when you had the 2nd one? My partner has GBM. After 7 months and 4 cycles of TMZ, we discovered that it grew back in early March. We were told that 2nd surgery is not recommended within this short period (7 mths after surgery). Anyway, it's a bit better at this stage, thanks to the trial drug that he's on. Still there are some concerns. I guess we just have to be strong and never give up.
Cheers!
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May 2012
Hi John,
Sorry to hear this. Is there any clinical trial that your wife can participate? How about second opinion? I know only a bit about brain cancer as my partner has it. We were told 3 months ago that standard treatment didn't work and he hadn't had much chance - 2-3 months if we do nothing. However, there are a few chemo he can try. We've decided to go with a clinical trial after we seek a second opinion. In the worst case scenario, we can still try other chemo if the trial drug doesn't work but it doesn't work the other way around.
Wish you and your wife all the best.
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May 2012
Big Hug for you Storm!! I think we need it. Life with GBM is terrible. I really hate it that the chemo will work for some time and then stop working. It's the fear for the worst every so often for the scan result or how our partners feel ... and perhaps it's the fear of losing someone we love.
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May 2012
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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May 2012
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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May 2012
I sometimes think all things happen for good reasons. I know it seems naive to think like that. I wondered why I had to see my dad having stroke when I was 13 y/o. Why did I have to experience all that? I guess in some ways it helped me to spot when my partner had stroke like symptoms and forced him to see a GP and then found out he has GBM instead. It's not a good finding but we did find it when my partner thought he had some virus and it would clear up with a few days rest.
Some good things of cancer that I can come up are to advance the medical science and to make us appreciate our lives and people around us more.
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May 2012
Hi Rarsie,
It's odd that the doctor didn't even know Temodar. Perhaps, he's a radiologist rather than an oncologist. Let's focus on the good scan that your son has for now :)
Cheers!
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May 2012
I think GBM teaches me to live my life a bit more, cherish people around me and everyday that I have.
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May 2012
Hi Rarsie,
The scan result looks kind of promising. The main tumour area is better and the swelling has improved as well. However, there is a spot of 7mm appears on the scan. It wasn't there 5 weeks ago. We'll have to wait and see what it's like in the next scan in 4 weeks time. More fingers crossed!! How's your son doing?
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