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 Post subject: Going off Temodal
PostPosted: Sun Sep 25, 2005 3:35 pm 
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Joined: Mon Sep 05, 2005 12:58 pm
Posts: 18
Location: Queensland Australia
I'm just about at my last cycle of Temodal and my onc doesn't think there are any proven benefits with continuing it any further, especially if I have no active tumour growth. BUT, I am worried. The way I think of it is like this: You put cockroach baits down in your house and you don't have any cockies, but as soon as you take them away the cockies come back. What sort of regime have others followed in regard to Temodal? Is there any cost involved with continuing on it as I am a public patient (the hospital funded all of it so far).


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 Post subject:
PostPosted: Sun Sep 25, 2005 9:30 pm 
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Joined: Tue Jul 19, 2005 10:12 pm
Posts: 260
Location: Melbourne
There is no cost in Australia for Temodal, the PBS (Government) actually covers the cost.

In previous times patients had to cover the cost for Temodal in combination with radiotherapy (I had to pay for Jane's Temodal just last year), but that changed earlier this year.

How many rounds have of Temodal you done? There are people here that have been on it for many, many rounds, there are some abroad that have been on it for five years.


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 Post subject:
PostPosted: Mon Sep 26, 2005 7:40 am 
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Joined: Tue Jul 19, 2005 10:12 pm
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Location: Melbourne
It would also be good for you to ask the oncologist how many patients he has taken off Temodal and how successful he has been with doing that (median time to recurrence).


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 Post subject:
PostPosted: Mon Sep 26, 2005 8:09 am 
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Joined: Mon Sep 05, 2005 12:58 pm
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Location: Queensland Australia
The onc has only given the Temodal to one other patient in the past, so he is only going off literature as to benefits, etc. I guess I could ask him this again though as I'm sure he's got contacts he talks to regularly about this kind of thing.
I've done 6 cycles of Temodal (I think?), plus the concurrent with radiation for 6 weeks at the start of the year.
I didn't realise that the PBS was now covering the cost. I thought it was only registered as a treatment for recurrent tumours. Its unlucky that you had to pay for Jane's chemo - it must have cost a fortune!


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 Post subject: Going off temodal
PostPosted: Mon Sep 26, 2005 10:32 pm 
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Joined: Fri Jul 22, 2005 1:58 pm
Posts: 50
Location: Woodford, Queensland
Today our Oncologist (Jen and I share same one) has suggested he wants to take me off temozolomide as well after next cycle and subject to a scan. I kicked up and stuck it to the Registrar, but what Jen and I need is data. So far everything I have heard suggests we should stay on it, perhaps on 14/28 protocol, but we need to be pointed at data/papers etc if anyone can help.

If push comes to shove, what are our rights and how do we get a new Oncologist.
Mike


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 Post subject:
PostPosted: Mon Sep 26, 2005 11:32 pm 
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Joined: Tue Jul 19, 2005 10:12 pm
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Location: Melbourne
In Australia you do have a right to a second opinion. Any GP can refer you to another oncologist, but it would be wise to know the opinion of the oncologist regarding the continuation of Temodal prior to referal.

The burden of proof should be on the oncologist to show why the Temodal should be stopped. It would be interesting to know on what data your oncologist insists that six cycles of Temodal is the "right" number. Did he give a reasonable explanation as to why he wants to stop?


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 Post subject: Temodal long term use.
PostPosted: Tue Sep 27, 2005 7:27 am 
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Joined: Wed Jul 20, 2005 4:13 pm
Posts: 48
Location: Sydney.
Hi Jen,

I have been emailing Mike privately but just to let you know, Don has taken 35 cycles of Temodal.

If you speak with some of the major neuro oncologists in the U.S many like to go to 2 years if the patient is doing well and responding to treatment.

There are a few patients that have been taking it for 4 - 5 years.

Uschi.


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 Post subject: long term TMZ
PostPosted: Wed Sep 28, 2005 7:20 am 
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Joined: Fri Jul 22, 2005 1:58 pm
Posts: 50
Location: Woodford, Queensland
Uschi, I have emailed Don's Oncologist, can you point me to the names of any in US who might be willing to respond to an email please.
Mike


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