I feel down. Time seems to slow down the last couple of weeks. I am sick of waiting. I am impatient. It feels like a life time since I have known GBM but it has only been 11 months. I occassionally hope that it was just a nightmare when I wake up in the morning. I sometimes wish it is over soon.... No surprise, my partner seems to suffer the wait more than me. Two more sleeps. Fingers crossed. Remember it is not a miracle drug. Whinge Grump Cry Deal with it!! ... View more

We've decided to go with Avastin; unfortunately, there is no clinical trial which use this drug that my partner can participate. Roche doesn't want to sacrifice their profits from $6.2 billion in annual sales of Avastin last year either. We will have to find $20K to pay for it. OUCH!! Initial news from the doctor was the drug had to be administered at a private hospital so there will be $300 per visit on top. Seriously!? Luckily, he got back to us and said the rules had changed and we could get it at a public hospital. I'm not sure whether it's because of public system or what, my partner still has to wait for over 2 weeks to get it - we saw the doctor on 13 June. The last scan (5 June) shows new tumour has markedly increase the size from previous scan (7 May), from 7mm x 6mm to 20mm x 16mm. By the time he gets Avastin (we were told it was likely to be 29 June ... only tentative date - HUH!?), it will be 3.5 weeks from the last scan, I hope it doesn't get too big! Seeing it's not free and we shouldn't keep paying if it doesn't work, the doctor suggested my partner getting a scan after 2 doses. Can he see the real differences when the previous scan that he compares is 3.5 weeks old? Logic says there should be a scan right before he gets Avastin and not 3.5 weeks old, I believe. There is a possibility that the tumour could grow to 50mm x 50mm by 28 June before Avastin is given and reduce to 30mm x 30mm after 2 doses of Avastin. It means the drug works but without a scan between now and next week, how could they know it? They would then interpret it as the tumour continues to grow, wouldn't they? We don't have any appointment with the doctor and I don't know when we will see him next. I talked to the nurse and she assured me that the doctor knows what he's doing and my partner shouldn't get the scan too often due to the dye injection too frequent is not good. Oh well, I guess I just have to wait and see. ... View more

I'd like to see what the experience people here have on using Avastin for GBM. I think we have to make a decision on the next chemo that my partner should try after the new drug he tried doesn't work. All my research seems to point towards Avastin. It's a lot of money and my partner doesn't think a few months that he might get from Avastin worth the $. The doctor said we start off by paying for one dose and see whether it works for him. If it does, then we continue on and once we hit a certain amount $20-30K, not sure, then Roche will chip in the rest providing that the drug proves working. In a way it's like gambling but if you don't try, you will never know whether it can help extending his life. I don't want to live with regret in the future, thinking what if.... ... View more

I don't think there is anything positive about GBM. Having to be positive I try to focus on the good side of it. Let's see how many I can come up with. - Getting stronger after being knocked over again and again and having to rise and ready for the next day. - Good exercise for my brain, having to do research and reading about the new area that I didn't go to the uni. for. - My partner spends more time with his family. - I don't put on weight even I eat and drink well quite often. ... View more