GBM4 - starting Temozolomide

Hi LC 50,

I am pleased and relieved to report that Patrick coped really well with his first cycle of TMZ. No sickness after the first day. Tiredness hasn't been too much of an issue either yet but he has on occasion had to have a nap during the afternoon. I am assuming though that this was a standard  'introductory' dose (300 mg) of TMZ which they will most likely increase next time around. We will have to see in a few weeks how we get on. Cognitively (language/words) Patrick is doing fairly well and I did notice some improvement since April/May. He was put on 8mg/d of Dex during June which was then gradually reduced to 4mg with luckily no decline. We will have to stay on 4mg for the time being but P wonders whether he should ask for it to be reduced to 2mg? Is Dex standard during oral TMZ treatment?

I also hope that you and your family are able to stay safe and well. Are you shielding?

G

Great news that he got through it well, generally the first round is at 75% so assuming that his next bloods come back OK then expect it to go up, probably up to 400mg based on the dosage you've stated. 

Generally dex is prescribed to control swelling around the tumour and shouldn't have any tie in with the chemotherapy. The dosage level should be at the amount needed to control this, it will be alot higher following surgery / radiotherapy as these treatments cause alot of swelling. Just need to keep in mind that steroids can also give an energy kick, I've found each time my dosage has dropped it's like I haven't slept for a week (especially on the smaller amounts and changes). Moving from 3mg to 1mg was pretty rough even dropping it in 0.5mg doses.

Probably worth also keeping the dex stable leading up to, during and few days after each round of chemo. If there's any side effects its easier to work out if its the chemo or the change in steroid dosage that is causing it! 

Xp

Xp,

Thanks for your helpful comments. They all make sense. I think P was put  back on Dex this past June because he'd suffered a very short blackout  (looked like a faint for about 20 sec) and also because of what the subsequent MRI showed, i.e. more activity/contrast uptake in the area of where the tumour was (or where the left-over tumour is). So probably a good thing not to tinker with dex doses at the moment.

G

Hi G, 

That's really good that Patrick coped well with his first cycle of TMZ. 

I don't think my husbands dose was increased after the first lot, it stayed the same. He was on 4mg of DeX for a long time, it's been taken down to 2.5 recently and he's ok with the drop so far. Hes very tired but it's a combination of TMZ and steroid decrease I think. 

Yes we've been shielding, we're not feeling too confident about going anywhere crowded for a whoke yet but we've started seeing family in the garden which has been good. 

Are you still shielding? 

Lisa x

Hi Lisa,

We were never really told to shield but we had been keeping ourselves to ourselves as from the end of January, well before it ‘all kicked off’.  We only went out for medical appointments and a supermarket visit once every two weeks. We live in a fairly rural area so in the beginning we also went out for the occasional walk. Like you, we’ve met with family in their garden just once. A very strange year it has been so far.

G

Hi G, 

I definitely has been a very strange year. We're trying to work out what is acceptable risk once shielding ends. We need to start going to see people and having family stay with us as we've missed this but busy restaurants and pubs will have to wait I think. We do go for a walk on the days he can manage it just to keep moving and a little bit active.

Take care

Lisa x