Bowel cancer treatment and side effects


Effectiveness of Irinotecan post 5FU

I have stage 4 bowel cancer with secondaries on the liver (the primary doesn't show on any scan). I've just completed x12 weeks of 5FU treatment but a scan shows that the liver tumors have continued to grow significantly and multiply. The only other option my oncologist has proposed is to try Irinotecan although it carries a high risk of diarrhea (I'm a T8 Paraplegic wheelchair user so severe diarrhea would be a real problem). Does anyone have experience of Irinotecan working when 5FU hasn't and/or the side affects of Irinotecan. thanks in advance.


Hi @chris28 and welcome.

Yes, I think Irinotecan can work in combination with or independently of 5-FU though they are most commonly prescribed together, as part of a treatment called Folfiri.

I've not had Irinotecan yet myself though many on here have. Yes, diarrhea is a common side effect, but can often be controlled with medications such as Loperamide. Unfortunately it would be difficult to predict how you would get on until you have it. I hope you would have additional support from your nursing team as a wheelchair user? This might be one worth talking through with @Charlotte Nurse Advisor when she's back in the office.


Hi @chris28 and a warm welcome from me too!

I’ve had irinotecan (as part of Folfiri and Cetuximab regimen) since Feb 2016 with a 6 month break for surgeries. I notice a bit of tummy cramping during the infusion but for me, I’m not sure it causes much in the way of diarrhoea.

I do however have diarrhoea frequently and use loperamide with good effect. Some of the episodes are with a bit of urgency but I haven’t had an accident yet fortunately! I expect this would potentially cause you a bit of difficulty in getting to the loo on time. I believe my diarrhoea is caused by having two chunks of my large bowel removed so it’s effectively much shorter and not able to absorb as much water as it would normally do. My treatment has been effective so far and I’m still showing a good response.

I guess the only way to know is to try it? Do you know if you can have Cetuximab or not?



Hi @chris28 I had irin, works well and I didn’t have any diarrhoea :x::x:


I get it now though on maintenance lol :x:

Alan C

@chris28 I've been on Irinotecan several months. Apart from stomach cramps and sweating during infusion never really suffered with diarrhoea. In fact I find I can get constipated for a few days after treatment, so I eat plenty of fresh fruit.

Good luck hope everything works out for you. :)

Polly 1

Hi @chris28 my husband has had 11 treatments with Folfiri/cetuximab which includes Irinotecan.

Mainly he had trouble with constipation but he did have one bad episode of diarrhoea and he had an overnight stay in hospital

Charlotte Nurse Advisor

Dear @chris28,

As others have said it is difficult to predict exactly what side effects you may have with Irinotecan and how severe these would be. As others have said diarrhoea isn't always a problem and when it has occurred it has been satisfactorily managed with medication.

I would discuss this again with your oncologist and depending on what nursing support you currently receive may be look at increasing this (if necessary) initially until you see how things go.

With kindest regards,


Jacey Connell 74

@chris28 I had upset stomach but was easily managed with the medication hospital gave me. :x::x:


@chris28 I had no major side effect with folfiri, apart from fatigue on day 5 and 6 and very dry skin.


HI @chris28, I HAVE LIVER TUMOURS and have had treatment with folfiri, which waS SUCCESSFUL IN SHRINKING THEM. HOWEVER, after a chemo break the tumours began to grow again, so my onc put me on irinotecan and cetuximab without 5fu and i was told on friday that my cancer waS STABLE AND THAT THEY WERE HAPPY WITH THIS DEVELOPMENT. Unfortunately,however ,i do suffer from severe diarrhoea about a week into the cycle and this can be very unpleasant.Indeed, at this very moment i am suffering quite severely from diahhroea and have spent a lot of time today in the toilet. After treatment my cycle usually begins with a few days constipation ,followed by diarrhoea.I am expecting that by tomorrow things will have improved considerably. Ihope this information is of use to you.Remember everybody is different and you may not have problems with irinotecan. Best of luck.BICHON.


Hi @chris28 . I've been on Folfiri (Irinotecan plus 5FU) since October 2016. I'm now on my 34th dose (in my case it is palliative chemotherapy - so I'm doing very well on it). Like you, I have a primary in my sigmoid colon which never shows up on scans - they just assume it's still there and tell me I'll be the first to know if my colon becomes blocked! I also have multiple bi-lobular tumours in my liver and tiny bits in my lungs. Under the folfiri my liver tumours have shrunk and are now deemed stable (the liver mets are the ones that are most likely to get me). I've not had any surgery.

Side effects for me have been minimal. Slight stomach cramps whilst it's being infused and profuse sweating around the head on the first evening (invested in a cool gel pillow from Live Better with Cancer website). No sickness or diarrhoea but they give you anti-sickness and anti-diarrhoea pre-meds before infusion. I do get a little constipated so I take a sachet of Laxido (laxative) for the first two nights of chemo and find that does the trick - any more than two nights then that gives me diarrhoea. I have a VERY sore mouth and mucousitis, which I believe is a side effect of the 5FU and very dry skin on my hands and brittle finger nails (ask them for double-base gel if you get dry skin). Oh and the obvious one... not a hair on my body! Although my hair (head) comes and goes and is a bit patchy. Currently I look like a mad professor!

Hope this is helpful. Best wishes to you and keep us posted.

Gill :x::x: