Temozolomide chemo -any experiences?

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Hi all 

I was diagnosed as having a primary brain tumour back in November  and after my biopsy, it was confirmed my tumour was a grade 2 Astro diffused glioma.  Therefore it could not be removed. 

I have had 40 sessions of proton beam radiotherapy at the Rutherford Center in Reading, which finished on the 14th April. Overall it went really well and for the first 3 weeks I could still get out for runs and was feeling pretty great unfortunately I then caught Covid!!! Luckily I was still able to have my treatment but the two combined knocked me for 6 and I am only really getting my energy levels back now. I have recently started exercise again which I find helps me just as much mentally as physically.

But now for the next stage which is 12 cycles of temozolomide chemo 5 days on 21 off.

Does anyone have any experience of how this chemo is tolerated? Everything I read varies from its fine to its worst thing ever Weary I know we are all different but any advice/ real experiences would be appreciated 

Thanks

Kerry

  • Temozolomide is easy in general, nothing like other regimes (eg lomustine), but I have heard some people do not find it so easy, some even have to reduce or stop. Matter of luck I suppose (the bloods as well). Causes nausea, upset stomach (very, very bad reflux), constipation (especially the anti-emetics), and of course fatigue. Constipation is no joke, it really hurts. I think for the days "on" and a bit more, if you can eat, eat small portions and maybe more fruit than solid food (to ease the constipation). Maalox by the bedside. Lactulose too if constipation gets too bad. I have had bad cycles and real easy cycles in terms of all the symptoms. I took it in the morning but most people take it at night. As my sleep already is touch and go, I did not want to cause more issues and stay awake all night, however if you can sleep OK, then maybe evening is the best time.

    One question, how did you arrange to have proton beam, it is not routinely (or at all) given to gliomas, unless in the brain stem and for children, typically. I am very interested to find out as I am nearing the time I will need radiation.

  • HI KT44

    a warm welcome to the group.

    My husband was given 6 weeks of TMZ along side radiotherapy after his craniotomy for a stage 4 primary tumour. He tolerated it really well. The CNS prescribed a strong anti-sickness drug for the first few days as a precaution but he was never sick with it. Throughout the 6 weeks of  treatment he was fine. Fatigue set in around week 4 but that may have been more to do with the radiotherapy then the chemo.

    They offered him a further 6 months but he decided at that point to decline all further offers of treatment.

    You could also call the Macmillan Support Services on 0808 808 00 00  for some guidance- most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear. 

    hope this has help,

    love n hugs

    Wee me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hey 

    Thank you so much for this all really helpful to know, I suffer with reflux anyway and take omeprazole daily so hopefully that will keep it under control.

    I stop struggle with sleeping too, I haven’t had a proper night since November. So as it has to be taken on an empty stomach I was going for the morning anyway but again good to know.

    RE Proton Beam my NHS consultant recommended it but it advised it wasn’t  available through them. Luckily I have BUPA cover through work and they approved and covered it for me. The Rutherford said I was the first brain patient they had received approval from BUPA for this treatment so think iv been really really lucky.

    Thanks again for replying and good luck with the next stage 

  • Hi again, just to say I took TMZ twice, in 2014-2015 (12 cycles) and in 2020-2021 (6 cycles with lomustine). On the first instance (2014-2015) I took it with a cocktail of other drugs, from memory omeprazole, viagra and chloroquine. On the second cycle we added lomustine, or more accurately we added TMZ to lomustine, and I also took chloroquine, viagra and hefty doses of verapamil (read Ben Williams).

    On another note I would definitely like to have the name of your consultant! Please message me if you can.

  • Thank you again 

    I believe I’m just having TMZ so will see how it goes but you’ve helped put my mind at ease 

    My NHS consultant was DR Elhadad at QA Hospital Portsmouth but as he wasn’t BUPA approved I was transferred to DR Waqueer Saleem who oversaw my proton beam 

    take care 

  • Hi 

    I am currently on round 12 of temozolomide for an in operable brain tumour after 6 weeks of radiotherapy last year.

    i have actually tolerated it well

    no hair loss or sickness 

    I do find myself more tired on day 5 of each cycle, but this is always the end of the week too and I work full time from home.

    What I have actually found worse than the temzolomide is the ondansetron I have to take with it - it’s supposed to be an antisickness but it makes me constipated and I don’t poop the whole time I’m on it and it takes over a week to get back to normal after. This usually makes me feel worse so if you can convince your oncologist to minimise the dose on this it might help

  • Good morning 

    im on temozolomide and radiotherapy for Glioblastoma wild type 

    I’m sure like yourself chemo tabs everyday and radiotherapy mon to Fri 

    I start week 3 on Monday 5th June and was told I’d start loosing my hair from week 3/4 

    Reading your article has given me hope I may hang onto some if not all my hair. 
    thanks for the hood and positivity 

    out of interest did you have your tumour removed as mine in inoperable 

    kind regards 

  • Hi 

    i finished 12 cycles in April and tolerated it well also. I didn’t lose my hair through chemo though I did through proton beam but it had grown back well and came back almost as soon as the radio stopped 

    mine is also inoperable they said at the beginning if the final scan is the same as the first then that’s a win and I’m having that on the 22nd June so just keeping everything crossed 

    good luck with it all and best advice I have is keep smiling and stay positive 

  • My fingers are tightly crossed for you they really are. 
    so you didn’t lose the whole head of hair. I am coping marvellous however the hair loss is a big thing for me. I know it shouldn’t be. But it is. 
    Thank you for your quick reply xx

  • No I only lost the area where I had proton beam but made the decision to shave it all off 

    I felt this made it easier to grow it back. In all honesty I thought I was totally prepared for loosing it as if had it short most of my life but truthfully nothing can prepare you for it 

    below are some pics of this time last year and now just remember it’s not forever and I found I preferred hate to wigs 

    good luck xxx