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Sue, many of the Stats seem to be based on the trial where it was given concurrently with radiation and then followed by six cycles using a 5/23 protocol. They then stopped giving it to people and waited to see what happened next. Not surprisingly most eventually died, although the people who had it WITH radiotherapy tended to live longer than those who had TMZ AFTER radiotherapy.
However, I am not sure that either the 5/23 protocol is the best or whether there is enough info out there where people continue taking it beyond the 6 cycles. The latest US thinking is that you should keep taking it.
I believe that either a 7/7 protocol or a 14/14 protocol is better and there are studies which show this. If you email me direct at belgari68@... I will send them to you.
The sad reality is however, is that it does not work for some people at all, but that should become clear if the tumour keeps growing. Then my latest understanding is that CPT11 combined with Avastin is the way to go.
There is also growing interest in Ruta 6 and Calphosphate 3.
After a full resection of a GBM IV I was given as little as 2 months to live. However, I had TMZ with radiotherapy followed by 5 cycles on the 5/23 protocol. I then switched to a 14/14 protocol and am now on my third cycle on 14/14 (day 10). I am, not surprisingly, a big fan of TMZ ( I am one of the lucky ones where it works, as well as lucky to be in Australia where access is now subsidised) and hope to stay on it for the rest of the year.
Mike
----- Original Message -----From: Sue NairnTo: btSent: Sunday, February 05, 2006 8:02 PMSubject: [nzbraintumour] temozolomideHello everyoneWell we're finally got our Oncologist appointment for Weds 8th. Dr Simpson at Wgtn. Does anyone have any feedback on him?Also, I have been reading a lot of information about "that drug". Very heavy going with the trial statistics etc...My question is... if this drug is an option for us should we go for it? How much better is the outcome than other chemo drugs?I understand it is very expensive, but money is not a consideration if it does the business.Look forward to any feedbackGood nightSue Nairn
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