Chemo pills: My husband started his... - Glioblastoma Support

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Chemo pills

Nylo profile image
Nylo
4 Replies

My husband started his radiation and chemo pills Monday. It is recommended to take the pills before bedtime. After taking the pills he won't go to bed. He's up all night, going outside....it's like a teverse effect. Has anyone ran into this? Any suggestions?

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Nylo profile image
Nylo
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Maddie_TBTC profile image
Maddie_TBTCAdministrator

Hi Nylo, sorry to hear this. Cancer Research has some information about sleeping difficulties due to side effects of treatment which might be helpful for you to have a read through: cancerresearchuk.org/about-... As we are not medically trained, we would suggest speaking to your husband’s medical team as they would be best placed to advise on how to alleviate his symptoms. Warm wishes, Maddie

CK1310 profile image
CK1310

Hey Nylo

I’m currently on TMZ (140 mg) with daily radiation .

I have absolutely found that the tablets impact my sleeping esp if I take late (ie 8 pm) . It’s like I get ‘chemo clean ‘ instead of ‘chemo brain’ where I can’t relax or switch my mind off. My mum even jokes about how it’s helping me become tidier, but everything just irritates me more post-tablet !

So I decided to start taking it earlier in the day instead at 5 pm, so by the time I’ve eaten - (usually around 6/6:30) the food helps ground me. Then I go offline & have a herbal tea or something, but I still have to use magnesium chelate & lavender oil to help sleep. Def would not want to take in am as that knocked me too much.

Anytime I forgot to take the tablet earlier …with TMZ it’s two hours post food , so would have to take around 8:30 or later. Then I would struggle to sleep until the early hours of the morning.

Now I know how it’s affecting me I just monitor it & schedule time to just chill out /avoid people so I can’t say anything blunt etc. Not ideal but it’s how I’ve been able to manage it.

Def sounds like something you should talk to the Encologist about. I mentioned it to mine today but they d never heard of my particular side effect. I have hardly ever had medication (or minimal) my whole life though so I’m super sensitive.

Manty54 profile image
Manty54 in reply to CK1310

Hi CK,

My husband is supposed to start his chem/radiation next week. His oncologist said to take the Zodran first in the morning wait 1 hour and take the tamedor wait 1 hour and take breakfast. He said do this for 4 days and then stop the zifran and see if he gets nausea. Did you get Nausea at all? He told us only 20% get that. I hope he is not among those 🙏🏼

CK1310 profile image
CK1310

Hey Manty

I got nausea in my first two weeks , despite them putting me on the Odensytron (anti - Nausea) - the one I have before the TMZ. It was so intense my first week I honestly didn’t think I was going to get through the six weeks of radiation/chemo combined at all. I was so ready to quit.

BUT luckily for me a patient & nurse noticed how sick I was. So the doctors prescribed me steroids for a short period so it would settle (It’s Dexy something I forget the name) . I was on them for less than a week then I didn’t need to take them any more. It was not ideal but it was a game changer for me - & I stopped being sick immediately . But it seems it was from radiation not the chemo.

I have not been sick once since & actually feel great now. I have two days left of radiation & another 5 days of TMZ then I have a month off to give my body a rest.

So try not to worry, hopefully he won’t be sick at all - but even if he is there’s options.

I had to carry a little sick bag with me the first few days but luckily most of the time I could get to a bathroom so it wasn’t an issue. My parents were /are amazing helping me get through it. They’ve moved in w me temporarily for support - I’m very lucky. I couldn’t cook at all or do anything but once it settled was much better with house stuff etc.

Gentleness & love & care will help him get through ! You got this whatever happens .

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