Tuesday 10 May 2016

TMZ 5/28

Hi everyone,
My brother is 20mths on from GBM diagnosis and doing very well. He has been on TMZ 5/28 for over a year. He tolerates it fairly well but for that week he's pretty much out of action. I'm wondering if he went on to the low dose every day would it be as effective on his tumour and also hopefully not make him as tired. Any thoughts?
Thanks, Lisa

7 comments:

  1. Hi Lisa, I don't know how helpful this will be but... My son, Chance, is being treated at UCSF. Their "gold standard" is surgery, radiation + chemo, followed by six months chemo 5/28. Because he would be sick for days, I once asked about low-dose Temador over a longer period. Our NO said there was no proof the low-dose was strong enough to be effective. For Chance, he had progression two months after stopping the 5/28. So I have mixed feelings about if we stopped too soon, if it ever worked at all, you name it. Sometimes it feels like a crap-shoot and we just make the best decisions we can.

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  2. Hi Jude, thank you. I'll ask our NO when we see him next month.

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  3. Lisa, I believe the 5/28 day cycle is better if your brother can tolerate the one week. Cannot back it up with science but when I was making this decision, I chose the 5/28 day cycle. Is your brother just tried or does he have other symptoms? I take zofran to help the nausea and just take it easy. I start on Thursday so the worst day is Sunday/Monday. So maybe adjust the schedule so his worst days are on on days he can just chill.
    Marc

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  4. Thanks Marc, I think he's mainly tired but he doesn't have to work that week.

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  5. I think it depends on the mgmt methylation status.
    I think people with methylated mgmts to better on the 5/23 cycle however non methylated mgmt patients do not.
    Correct me if I'm wrong but I'm sure I read some where that a continues low dose of temodar is better for non methylated patients

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