Side Effects

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Good Afternoon All

Mum had her first Chemotherapy session on Monday lunchtime. It finished with an "episode" where she was struggling to breathe, talk and couldn't use her left arm (the arm which didn't have the IV in). It passed with the help of Oxygen and she waltzed out of the unit as if nothing had happened! Typical of my Mum!

Anyway...... today she is still lethargic, yukky and has random short lived pains all over. I'm struggling to make her see this is normal and that duvet days are absolutely OK. I think she thinks that she should be up and about by now.

I need to make her understand that this is harsh on the body and she needs to accept that she won't be fighting fit for a while.

Help?

  • Hi Diane,

    Which chemo is your Mum on? I found that the days after I stop steroids/dexamethasone I feel worse as these give you a bit of a kick (day 3-4 post chemo). Don't hesitate to ring the hotline though if she is worried about pain, that's what they are here for.

    Take care,

    Cecile

  • Hi Cecile

    I think its called Capox. The steroids probably are the issue but she has to take them 3 days out of a 7 day week. So by the time she's over the comedown, she's back on them

  • Hi  Yes duvet days are absolutely acceptable and now is the time for your mum to listen to her body. Capox is oxaliplatin and capecitabine - both are forms of chemotherapy where the oxaliplatin is given by iv and the capecitabine in tablet form so your mum is still ‘having chemo’ while she’s on the tablets. 
    Is your mum on weekly chemo? It’s usually given over 3 weeks with day 1 iv, then 13 days tablets then a week off? I was given steroids for the first 3 days after the iv but then no more until after the next iv. Obviously everyone’s chemo is personalised to their needs but just wanted to make sure that you’d understood everything correctly?

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Diane. I’m on similar chemo. Had chemo on Tuesday and Wednesday - I’m still tired and stay in bed till 11am easily. I am a morning person - so laying in bed is not normal for me. Buy I honestly can’t be bothered to get up - so stay in bed till almost lunchtime. As per my ‘usual’ chemo routine, I should be ok by Wednesday or Thursday this coming week.  Please tell your mum that she needs the duvet days - hopefully your mum will feel better soon

  • Hi Diana,

    I started CAPOX on 12/1/24, I was okay for the first 3 days but by the Tuesday I felt sick and then Wednesday 17/1/24 I had diarrhoea and was so tired I didn’t move off the sofa all day! Thankfully I’ve been fine since then. I only take steroids and anti sickness for the first 3 days of treatment.

    l hope your mum is feeling a little better too.

    Rachael x