J1958 - coping with chemo and diarrhoea

How do others cope with chemo and diahorrea, don’t know what to eat and loosing weight , just had first chemo session over a week ago with folforinox treatment

  • Hello. I had 6 months of FOLFIRINOX and yes, I hear you on the diarrhoea. I was prescribed Loperamide to prevent it, which worked. But I decided it worked *too* well and stopped taking it, opting instead for 1-2 days of diarrhoea every cycle, and staying regular for the rest of the time. I had fruit first thing every morning, with black coffee, which I still do, and - as I say - I had 1-2 days of diarrhoea every two weeks (days 4/5, if I remember correctly). Other than that, I stayed as mobile as possible and ate as well as I could (and as much as I wanted, which I was advised), and the diarrhoea only bothered me for a couple of days every cycle. Hope that's helpful - of course, it could be completely different for you.

  • Thank you, I’ve had the fiahorrea on and off since day 5, also with abdominal cramps and lots of wind, it’s only my first time with the chemo I have spoken a few times with nurses on the cancer line who advised me to take immodium but like you don’t like taking pills but on this occasion I think I should have, it’s knocked me out. Food intact poor but have appt with a dr on oncology for the first time see what she advises, I had a whipple op for cancer of pancreas before start it chemo and everything was got and taken away I lymph node was affected and removed but it’s still scary time wondering if you will be ok, anyone facing a whipple op is brutal but recovery wasn’t too bad and only in hospital 7 days, back to normal within 6 weeks , but chemo feels tougher for me

  • I had the Whipple pre-chemo, too. You must be pretty tough if you were in hospital for only seven days! I also had really bad wind during treatment but, again, only for a few days every cycle. What happened with me - and I'm sure they'll be doing the same with you - is that they used the first cycle to adjust small things, to minimise side effects like peripheral neuropathy and bowel issues. It's early days, so don't worry - things will settle and hopefully you'll soon be able to predict roughly what happens and when. The reason I stopped taking Loperamide was simply that I realised that I was either going to have diarrhoea or constipation, and I found the former a bit more manageable: it passes, whereas constipation for me wasn't a good alternative. There are so many different regimens of chemotherapy, and FOLFIRINOX is brutal: my oncologist told me, for example, that she knew of no patient on it who was able to work at the same time. It can be quite a while before strength returns to normal. So allow yourself to be knocked sideways - you're on about three different drugs that are are purposefully trying to prevent things like normal DNA function, and Oxaliplatin is especially harsh. People used to ask me what this treatment was like, and all I could say was that it was like having food poisoning for a few days every two weeks. In my experience, once you're used to that it gets a bit more manageable. My advice is to eat, keep moving and give in to it when you have to. And make sure you take all the Creon you need to. Like I say: if the Whipple only kept you hospital-bound for a week, it sounds to me like you're very strong and that will make all the difference. It's an intense but comparitively short period of time. Sending you all the very best, and please get in touch if I can be helpful.

  • I had really bad diahooea so much so I had to go to A and E, I was given loperamide by the chemo ward which worked to some extent but it ended up that I had gastroentroiris.  I would suggest talking to the chemo ward about how much diarrhea you are having.  For me it got to the point I went about 30 times in one night and that was the A and E job where I needed to be on a drip as the dehydration and it all was affecting my heart rate.  Anyway, after my A and E trip and being given antibiotics, I was eating chicken and vegetable broth (home made), tinned potatoes, natural yoghurt, probiotics (yakult didn't taste too bad), crackers, taking electrolyte drinks (SIPS was my favourite as you put it in water but lucazade do some good sports ones), and crackers.  I avoided spicy stuff and onions, as well as garlic, as well as tried to avoid creamy stuff.  I also tried to drink a good amount of water. I took oregano tablets as well as peppermint as these are said to be good herbal remedies and my GP also ok'd them.  Basically I had probiotics and a BRAT diet for a while, then went onto simple foods e.g non processed meat and veg, I ate in small quantities but as often as I felt needed.

  • Offline in reply to samroz3

    That’s sounded horrible I wasn’t and hope never as bad as that, I did contact the hospital who advised I take loperamide and they worked for me, it was mostly to do with how strong the chemo was they gave folfolinox can’t spell it, and then I seen my oncologist and I gave a short break from chemo as I lost so much weight and felt awful but I start again next Friday still the 3 bags of chemo and a 46 hour pump to come home with bug the strength is being reduced so fingers crossed  it’s not so bad, I also had a whipple operation before starting chemo, it’s been a tough few months, I do hope your feeling much better and things are improving for you, many thanks for the chst