Hello. I start my second series of chemo at the end of April (deferred by my choice from last week). This will be 3 months of Irinotecan with Capecitabine (+ Atropine). On a 9 day cycle.
Reading the list of side effects is, frankly, scaring me. In 2018 I had emergency surgery for a perforated bowel tumour, ended up with a stoma / colostomy, then sailed through the first 12 week treatment with Oxalyplatin, no worse than nausea (well managed), fatigue (I snoozed quite happily) plus some tingly fingers, cold face and a couple of nosebleeds. I was able to work a little during the 2 week cycles.
After getting an All Clear back in September, cancer markers appeared in my January blood test. Scans show 3 small tumours in my liver.
So I'm on my own facing: diarrhoea (dehydration risk and just horrible with a colostomy)... DVT... nosebleeds... mouth ulcers... Reading other group comments only looks worse! Hair will fall out, which didn't happen before (that's the least of my worries). And then there's Covid19 for which I'll have to go into shielding.
QUESTION: Does anyone have experience of keeping the side effects under control? My oncology team was excellent in 2018 but goodness knows what state they're in now. I would like to know what to ask for. I don't feel confident about being able to manage.
Hi and a very warm welcome to the online community
I'm sorry to hear about the possible side effects that you could be facing whilst taking Irinotecan and Capecitabine. I don't have any experience with these drugs so input their names into the search bar in this group. Unfortunately, the only posts I found were several years old. You could still have a read of them but the posters may no longer be on this forum for you to ask them further questions.
I have found this information from Macmillan about Irinotecan and this on Capecitabine. In both cases it tells you about the side effects and how to manage them.
Of course you may only get some of the side effects or none at all as everyone reacts differently. I'll be keeping my fingers crossed that you get none!
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hello Court,
Thanks for getting in touch. Had my first irinotecan infusion on Thursday and started taking capecitabine at home. (Isn't it fun how every medic says capecitabine differently?!) The effects have knocked me flat: I'm confused, woozy, exhausted and lost co-ordination. As a normally eloquent person, I can barely type let alone speak.
Having previously viewed some of the Bowel Cancer community pages, I have decided to avoid the lot. The accounts of terrible things happening terrified me.
I will get advice from my Oncology team, and a couple of people I know with experience as cancer nurses and as patients.
It's good of you to reach out. But for now, I'm staying in my bubble 
Warm regards to your mum, and to yourself for health and wellbeing.
Chloë.
