Treatment issues with 1st cycle

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What a first month of treatment. Started on Oxaliplatin and capecitabine at the beginning of June. Infusion was fine. The side effects were worse than I thought.  The neuropathy was something else, the tiredness, diarrhoea, queasy, pain. Used most of the anti sickness and anti diarrhoea tablets. Had a 4 day spell in hospital due to extreme stomach pain, couldn't walk very well. Only took the capecitabine for a week. Told to stop because of the diarrhoea and the antibiotics whilst in hospital. Found to have diverticulitis, never had it before, do not want that pain again. Round 2 starts next Tuesday, no idea how not taking full dose of capecitabine effects treatment overall. Trying to get info from AOS is like getting blood from a stone. Different people tell you different things. I have a phone call with consultant on Monday, hopefully that will be helpful. Not looking forward to round 2, frantically trying to get my head back in the fight game. Tina Tumour has to go. 

  • Hi  and I’m sorry to hear that you’re having such a rough time of it. Hopefully your consultant will suggest a dose reduction in the oxaliplatin - they always start you on the maximum for your weight and height so it’s quite common to have it reduced. Also with the anti sickness meds they will start you on the cheapest so keep asking for another if you’re struggling - I’ve heard that Emend is good?

    Yes it’s tough so listen to your body and rest when you need to and everything crossed that the next session is better x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thank you so much for your reply, yes I speak with consultant on Monday, I will ask about a reduction. Thanks again x 

  • Ask for Emend, it’s the best of the anti sickness drugs.  I am given it as an infusion over 30 minutes, I have a break for 30mins and then start the Oxy.  I found each cycle brings something new and some side effects disappear- weird.  

    l’m also a fan of loperamide.  When I had severe diarrhoea I was told to take up to 8 per day which worked after a couple of days.  Before that I was restricting myself to 1-3 which had no effect. 

    I’m no expert but I think the worst side effects come from Oxy not the tablets.  This is the drug they kept reducing for me and removed completely from my last cycle.  xx

  • Thanks for your reply. I'll ask about Emend, I was given Metoclopramide for nausea and loperamide. I think both of these were insufficient as I was unknown to be fighting the infection with the diverticulitis. 

    1. My side effects from Oxy started as soon as I left the ward with the neuropathy, after a few days I was given amitriptyline but they didn't make much difference, again I think this was because Shrug tone1s fighting the diverticulitis without knowing. I made many calls to AOS in the evening/night. A much better service than the daytime team. They called ahead to the hospital to tell them I was cShrug tone1g. Im just worried about this next round. I think I was ok with the tablets, but who knows Shrug tone1‍ fingers crossed this time will be better sailing Fingers crossed
  • Hi Nora,

    I had a lot of issues with side effects too.i only did 3 out of 4 cycles because of the side effects but consultant was happy and scan were ok.best of luck