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.
This makes me so mad, how can the Govt stand by while people need these drugs.... makes my blood boil, I wish you & hubby so much luck with everything. Sending (((HUGS))) Alison
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Super Contributor
I see what you mean about the scans.Why can't the doctor? Although his nurse defended him ,hopefully she passed on your concerns. Our system is full of inequities regarding costs . You must be feeling stressed.
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New Contributor
Dear Peanutz.. I am soon to be in that same position. I have no health insurance and we have begged, borrowed and stole our way since April 17th when I had my gallbladder removed and was diagnosed with gallbladder cancer. Next Tuesday I am having part of my liver removed and we have a payment plan of $500 a month to the surgeon. The Heart Doc who had to run tests to okay me for surgery is allowing us to pay $50 a month. My first surgery is paid off but not my PET scan, my anethesiologist (I know that can't be spelt right and the radiologist. I will now be starting a whole new set of staggering bills with this coming surgery. Also after this I will start on the chemo path with no money. What you are saying makes perfect sense regarding the size of the tumor when the test is done. Why can't they see that and address your worries? Cancer is bad enough without you having to worry about how they treat it the most effective way. Have you tried checking on line for similiar situations and results? I wish you good luck and much love. Jan
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Occasional Contributor
Hi All, I am surprised you have to pay, we have had everything bulk billed, operation, radiation chemo, all scans, and were going to be accepted on the free trial, the only thing we have paid for are our scripts. The system is strange, you should have come on a boat and the gov would have given you everything, sounds nasty but hey, you pay taxes all your life and when you need the gov to come through, they are too busy being arse holes to each other. My husband is slowly dying mentally, he is forgetting simple things, not knowing who he is talking to or what they are saying, the last two weeks have been painfull watching him start to slowly go, you think you have all this time to get prepared but you don't, it doesn't make sense that I don't think he even knows what is happening, I suppose the 4 tumors are slowing growing and blocking things, I wish I could make it faster, for him, he looks so confused, and blank, but that is the real cruel thing about this, the waiting, sorry just having a bad week, stay strong, and hope for the best.
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Frequent Contributor
Hi Jan, Initially, I didn't understand why you had to pay for surgery and many other things. Just had a look at your blog and I now know why. In a way, Australian public system seems to be better than the States. We pay for some drugs (Dex, Somac, Temodar) at subsidised price. The surgery and everything else (radiotherapy, MRI, appointments with radiologist and oncologist) seem to be covered by Medicare as we are in public system. We pay the gap for second opinion with a specialist. However, with Avastin, as it is not in the PBS for GBM we have to pay full price. I think it is listed in PBS for different cancer types though. The government doesn't think it is worth the money for people with GBM. That's probably why they don't want to get him MRI scan too often to save cost perhaps. Take care. HUGS!
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Frequent Contributor
Hi Rain76, Sorry to hear about your husband but thanks for sharing. I sort of want to know things that could happen in the future so I can look out for all the signs and be prepared. I can't imagine how hard it must be for you but I hope you still have some good times together. In a way, it's good for him that he doesn't really know what's happening. It was quite hard for my partner when he couldn't speak for nearly two weeks. That time he knew and was aware of everything. He understood things people said to him but he couldn't speak nor write. What came out didn't make sense and sometimes sounded like he didn't know how to speak. The notes that he wrote are all cryptic. He was locked inside his own body and was very depressed. I know it's nothing compare to what you and your husband are experiencing at the moment and I have no idea how to cheer you up. I hope this journey is not too hard on both of you. Big hug for you Rain.
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