GBM4 - starting Temozolomide

Morning,

TMZ dose is worked out on body mass, height/weight, first dose was 300mg then think went to 380mg. Anti sickness is usually 30/60 mins before eating. Graham didn't have any issues on TMZ, didn't take anti sickness after first month as didn't need. Graham only has couple cycles of TMZ because of covid, since found out unmethylated, he is now on PCV and really well, no deficits other than short term memory issues.

Good luck and take care,

Love Lisa x

Hi Lisa,

Many thanks for your reply. It explains a lot. Patrick is quite a bit older than your husband. He was a reasonably fit 71 year old when he was diagnosed last year. He’s still reasonably fit but he’s had to give up his beloved bike rides. He used to go out on his road bike up to three times a week. Giving this up has been worse than giving up his driving licence.

We were led to believe it would be better to start TMZ now rather then later when fitness might not be the same. 

Like you said in one of your posts in a different thread, it’s all a bit of a rollercoaster with good and not so good days. One day at the time is the trick.

Take care

Gina

Hi Gina

Sorry to hear about Patrick

My husband was diagnosed in Dec 2019.  Problems his speech. He had surgery with good removal and then 6 weeks of radiotherapy and chemo .  Now on our 5th round of Chemo on its own

The dose is dependent on total body surface area.  Similar but more accurate than BMI.

During Radiotherapy Eamonn was taking a dose of 160mg. Then 1st round of just Chemo was 330mg. They increase it again in 2nd round and he is now on 440mg.  It does depend on the patient weight and height,

It is very much a rollercoaster. Eamonn has been tired but never sick. He takes the anti sickness 30 minutes before chemo and only needs anti sickness on the chemo days

Hope this helps and the very best of luck

Hi,

Many thanks for this. Patrick's main issues were/are also with language. It's just some word 'choices' and switching he/she around etc. His writing (ability to construct proper sentences) is not too good but he can play online scrabble quite well. 

Good to know the TMZ doses initially depend on body surface area. This was never explained to us.

So tomorrow will be day1 of cycle1. Not really looking forward to it but keeping my fingers crossed that Patrick will cope with the treatment without too many side effects. 

Best wishes

G

Hi, I've just finished 6 months of TMZ, dosage as others have said is weight and height dependent. 1st cycle is also generally prescribed at a 75% dose so you should expect it to actually go up for the 2nd cycle assuming the blood work comes back fine. My first round was also 300mg and went up to 400mg for the other 5 cycles. (Also unmethylated diagnosis)

Never had any issues with nausea or sickness, generally took one anti sickness before dinner in the evening, then another half before taking the TMZ before going to bed. (Was advised to take the TMZ before going to bed in the evening, as you then sleep through most of it) ended up feeling like I had a mild hangover when I got up in the morning but generally was fine and got through the 6 months only needing the odd nap in the afternoon.

Hi Xpio,

Thank you for responding as it  certainly helps to find out how others get/got on. We started today and P decided to brave it without an anti-sickness tablet. Not a good idea it seems as 3 hours after taking chemo he didn't feel too well. Resting now.

Interesting that you were advised about taking it in the evening. I might suggest this to him. Is this something one has to check with the medical team first ? Also we were only provided with one anti-sickness (Ondansetron) tablet per day so for us 1.5 tablets is not on at the moment.

Best wishes

HI 

Just to let you know my husband has only been given ondansetron .  He takes it 30 mins before the chemo.  We normally do the chemo at 9pm so he takes it at 8.30pm.  We are in out 5th round and this has worked well for us

I don't think not taking it is a good idea!

Good luck and fingers crossed

Take care of yourself too . It is very important to mind yourself so that you can mind him

I was given domperidone as well as ondansetron. Could take the domperidone up to 3 times a day.

Hi,

Graham was originally taking TMZ in the morning but as doctors know he exercises they said ok to take in the evening so had more energy during day. He was fine in the morning.

Take care,

Lisa x

Hi ginato 

Really sorry that you and Patrick are going through all this too. I read your posts and was wondering how he got on with his first cycle of TMZ? My husband was diagnosed in August last year and has  just finished his 8th cycle of TMZ. He takes 340mg and he takes it in the morning.  I was interested to read that some people take it in the evening and that helps with fatigue in the day. My husband was told to take the first dose in the morning and thats what he's done ever since.  Tiredness is a big problem for him and they are trying a 5 week cycle instead of 4 now to see if s slightly longer break with help with tiredness. Not sure if anyone else does this? 

Word finding is also a problem for mg husband but other than that and being tired he's doing well and his last scan was good. 

I really hope Patrick coping well with his treatment and you both stay safe and well x