Hi all, literally got one dose tonight then that’s the first cycle done, feeling really lethargic today, generally been ok, was a bit flushed in the face yesterday but eager to hear off others who have been or who are on this. I have a total of 8 cycles ahead of me.
Hi DoubleG,
Well done on getting throguh the first cycle! Are you on capacitabine tablets alone? I had 8 cycles of capacitabine with oxaliplatin and I had little to no trouble with the tablets. During my first couple of cycles I had bowel cramps and an increase in bowel movements (but no diarrhoea). The helpline told me to try buscopan but loperamide worked much better. Everything settled down after those first few cycles.
Hi Double G.
Same as Bren for me. Capecitabine with oxy chemo - but after taking the capecitabine tablets for 25 days along with radiotherapy. 6 cycles of the combined chemo with a stronger dose of capecitabine after the radiotherapy, started getting messy around cycle 4, mega issues with diarrhoea and keeping hydrated as even water was coming straight out. Loperamide stopped working for me even in massive doses, but I got prescribed a pretty strong dose of codeine, which not only bunged me up, but thankfully sent me to sleep too.
Keep a diary as it is early days for you and I found the cape had a cummulative effect over the months. It will help you see what works for you and when you need to use loperamide and recognise if it is not working for you. I also had to get some dioralyte to replace all the salts I was losing. That made a big difference too. People/friends think that chemo tablets are an easy option and not as bad as infusions, I would beg to differ having experienced them, they deserve the respect that we are told about when they put us on them.
Hopefully you won't need any of this!
Wishing you all the best, stick with it!
Hi DoubleG,
sorry it’s taken so long to reply, I’ve been having some technical problems this week. I was in tablets only, I managed 7 out if 8 cycles. I found it worse on my chemo free weeks.
The side effects built up for my with each cycle and after cycle 4 they had to lower my dose.
For me the main issue was fatigue and I still feel that most days (12 weeks post chemo).
wishing you good luck
Cerysm
Hi Arse,
I would just like to add on the capecitabine front, that I managed literally 3 doses. It caused capecitabine induced coronary vasospasms in me, which was the equivalent of having a couple of heart attacks. My adjuvant chemo was completely stopped over this as my oncologist pointed out that the cancer treatment isn’t supposed to kill you.
Give me an infusion any day over that!
Thanks, well i have an ileostomy so i get the phantom poo thing so having recently moved onto codeine it’s been a game changer and the loperamide helps with the loose output. And also want to get dioralyte as i get dehydrated with the stoma, always drinking lots, but have to get up in the middle of the night to take a leak and empty my bag. I just hope the next 7 cycles go ok.
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