ceasing temodal - gbm brain tumour

[tatsoi]

Hi I have some questions about ceasing temodal. My dad was dx gbm july 2012. he had successful resection (100% visible) radiation and temodal for six weeks and has regular rounds of temodal...5/23...(or whatever the standard is) he is also on rindopepimut clinical trial (phase 3) He seems to be doing well. and has a fairly 'normal' life...no driving anymore though and lots of visits to the hospital for treatment. all mri's have been clear...no recurrence. His neuro oncologist has given him an option to cease taking temodal in a couple of months. (by then he would of been on maybe 9mths?) I'm trying to get information to help us make a decision. what would be the advantages of coming off the temodal? I thought the trial he was on was coupled with the temodal...so will need to get clarification around that.(as she said the trial will continue) Anyone long term on temodal? anyone know how long PBS covers cost of temodal for GBM? any thoughts or ideas about further questions to ask the doctor would be welcomed. well wishes to all. xxnicola

[Mango]

Hi Nicola I can't answer most of your questions but can talk about our experience. My husband is very long term on Temodal, apart from some very small breaks since diagnosis in August 2006. The breaks were when there was tumour progression the first time and we tried etoposide for a while, but then went back on it on a daily dose quite soon after. We also had a small break when his blood counts dropped, only for two weeks though. We have never had a scan that the doctors would call clear in all this time. So you are in a different situation with your father. It is definitely possible to come off and go back on so that should not worry you. The length of time on it is also not a worry. Good luck with your decision, in any case it is not a never again decision so going off it is not the end of temodal as an option. Al the best Irene