Has anyone continued temozolomide past 6 cycles

I’m on cycle 11 (of 12) and after the first cycle, it has been fairly bearable. I quickly learnt that you should take it in the evening just before you go to sleep. This is what I do:

An hour after your evening meal take a tablet of ondansetron (8mg), which is fantastic for the nausea (although take plenty of laxatives as it is very constipating),

An hour after that (I.e. two hours after eating), you can take the temozolomide with plenty of water, although I always do this when I’m just about to hit the pillow.

You sleep through the worst of the nausea, and I use cyclizine 50mg to take the edge off any nausea through the day). Do some exercise every day - try 10 minutes in the morning and 10 minutes in the evening. I have my bicycle on an indoor smart trainer, so I can jump on it easily to get the heart pumping. I find that if you can do something then it really helps beat off the fatigue and take the edge off the nausea (providing you don’t overdo it).

Hope that helps - let me know how you get on!

Hi realstuf, thank you for replying. Its good news that you don't feel too bad after 11 cycles of TMZ, I hope its working well for you. Is 12 tge maximum amount your team will give? My husband takes his tablets in the morning as this is what he was told to do at the beginning. He usually gets up early to take them then he goes back to sleep for a couple of hours. He does take ondensetron with them and doesn't really have nausea.  The fatigue is the worst thing for him. He does try to get out for a walk and then do something like mow the law  so he's trying to keep moving.  Due for lot 9 in a week or so  we'll see how that goes.take care x

I did 12 cycles and had no ill effects except some nausea, there is just one good med for it that eliminates nausea. I asked and got it from the GP. I also had some fatigue, sometimes spent days 3-5 in bed watching TV. Other cycles I was almost perfect. What temodar does is brings bloods down and so much so that they have to discontinue it (or lower the dose). Luckily my bloods were always good. If you can get up in the middle of the night and go to the toilet unassisted then you are doing very well in my book, let alone cutting the grass or getting on the exercise bike. What I am trying to say is that some nausea and fatigue from the temodar is nothing compared to whatever else the glioma can do to you. I took the temodar in the mornings on a completely empty stomach. I think it was the kytril first, then the viagra, then 30 mins wait, then 4 (or 5?) temodar capsules, and nothing to eat for a few hours after. From memory day 3, 4, 5 and 6 were the "bad" days, in one occasion I stayed in bed for 2 days. Other times I was absolutely fine. I remember my white bloods never dropped below 4000 (I cannot even remember what this 4000 is anymore).

I would definitely recommend at least trying it at night time. My first cycle (which I took it in the morning) was grim and I was left on the sofa for most of the week). When I made the switch, it was like night and day - so much more manageable. Several of the oncology nurses at the Royal Marsden (Sutton) where I get treated also recommend it.

I was supposed to stay on it forever but felt awful so only did the initial 6 months of it. I was diagnosed with a GBM4 5 and a half years ago I don't believe the TMZ has much benefit at all for me. just made me feel terrible so I said no.

Hi, it's not good that the TMZ left you feeling so awful but great that you're doing ok 5 and a half years on from your diagnosis. I'm sure they haven't been easy years but you're still here 

Best wishes 

Hi, I stumbled onto BBC Radio5 live a few days ago, and I forgot to mention chemo!! I’ve been on 180mg TMZ since Dec 2019, I was diagnosed 10/9/17 with grade4. I am taking it normally at the moment and feel ok, get the odd sickness moment, but I’m lucky. I wish my wife, Director level at pharmaceutical company, offered me something, not ZERO support, apart from driving a car....... I’m not religious, but I pray everyone is doing ok, to a degree, gets good support, and won’t accept the very very tight NHS, I wish the NHS and large Pharmaceutical companies were different in some respects. I wish the NHS was a little more flexible, and big companies less profit dominated. 

I am a very lucky guy, coming to 3 year survival........ wow! I am happy to sit with anyone in person and talk about life. This GBM4 is tough. Yes it’s an illness, the challenge we all face might be different depending on everything in life, age, family, behaviour, food, support etc etc...... BUT GBM4 patients need the right SUPPORT, in my mind.

I wish everyone my best wishes........ Keep fighting, keep smiling, I’m off to Spain in a few weeks...... LIFE.....

Chris