QUESTIONS - TRANSFERRED FROM FRONT PAGE, 13 DECEMBER 2000

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WE HAVE SOME QUESTIONS TO ASK AND MAYBE YOU CAN HELP US

Introduction: There is no brain tumour support group in our city and most local medical expertise appears to be concentrated on the treatment of cancer, not brain tumours. Some of the visitors to this website are travelling this same journey. Just as we have, they will be asking themselves many of the same questions. Perhaps you can help.

These are the questions which are on our mind. If you have any information based on personal experience or research which might assist us we would be pleased to hear from you at string@hotkey.net.au Thank you. Some answers are starting to come through and the information has been added to the end of each question.

Qn 1. We are aware that generally you should wait for two months after radiation treatment to obtain a useful MRI of the status of the tumour area. What would be the usefulness of waiting for three months? Could a wait of three months reduce treatment options should there be evidence of regrowth? (Thomas K from Germany has advised that three months is standard practice also in Germany but it appears that two months or even earlier is standard in the USA. From an update about a woman in Norway I note that their practice appears to be to wait for three months.)

Qn 2. We have read of good results being obtained through the use of temozolomide (Temodar, Temodol). Is it standard practice with gbms to use temozolomide immediately after radiation has been completed, or to wait and see what the two-month MRI reveals? Does a delay in utilising temozolomide reduce its effectiveness? Are there any restrictions on its use in Australia? (A US reader has written: "Many places are giving Temodar out of the gate now without waiting for another chemo to fail first. At the larger centers, it seems to be used in combination (two at once) or in cycles (switching off, one chemo for a while, then another)." We have heard second-hand that Temodar might not yet be available through Canberra Hospital. Dennis A has advised that as of Friday 8 December 2000 it is now regarded by the authorities in Australia as a first line drug.

Qn 3. Is thalidomide equally as effective as temozolomide? Is it used separately or jointly with temozolomide? (Dennis A has canvassed some aspects of these questions on his website. Also, this comment has been received from a US reader: "Thalidomide can be used with Temodar because they act in different ways---thalidomide starves the tumor by reducing its ability to generate new blood vessels for itself to consume, so it is more preventive or pre-emptive; Temodar is cytotoxic and can work to reduce the size of an existing tumor or kill cells too small to detect just yet, postponing the time of regrowth.")

Qn 4. Is it safe to reduce dexamethosone directly from 4mg to 2 mg per day in one reduction, or should it be a staged reduction? If so, in what manner? (This appears to vary with the individual. One woman from Sydney twice ended up in hospital following her attempts to reduce the Dex at this level. A US woman wrote: "When you think about it, dropping from 8 mg to 6 mg is just a 25% reduction, but later dropping from 4 mg to 2 mg is 50%, which could be more important than thinking of it as just 2 mg, which sounds so innocent." Some comments about Dex reduction now appear on the main webpage.)

Qn 5. In the absence of any other deficits (apart from occasional short-term memory), during and after radiation therapy, might the continued use of dexamethosone be responsible for an unsteady gait?

Qn 6. What is the role and effectiveness of a second surgery for debulking in the management of gbms? (There has been some recent debate on the brain-temozolomide e-mail list about this subject, one mother regretfully stating that it had been a mistake in the case of her 13 year old daughter who is now blind and has severe deficits. Others say that it has been useful.)

We are not conducting a "public opinion poll" to determine what might be the best treatment for Marg's gbm. Those decisions will be made by Marg in consultation with those closest to her. However, we want to be in possession of the best possible information based on clinical experience and the practical experiences of fellow brain tumour patients and their caregivers. We would appreciate any help you can give us string@hotkey.net.au

Thank you.