Bowel cancer treatment and side effects

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Lizsa

Update - Recommendation is 6 months Capecitabine tablets

Hi all. Thought I would update. I saw oncologist today, who was lovely and really explained everything to us well. As I have blood vessel involvement but not lymph nodes they are recommending 6 months of Capecitabine. They have strongly encouraged me to have it and said it improves 5 year survival rate. I asked for percentages. He said they can't really give accurate percentages but it reduces the chance of it reoccurring by at least 5%. So 5 people out of 100 will benefit and you don't know of that will be you. I will have it as I think anything to reduce the risk of it returning is worth it. And 5% I think is worth it for me.
Just wondering if anyone would be happy to share their experience of Capecitabine as I am really worried about the side effects. Also whether anyone else may may be starting this medication too and want to share experience together :)

Also, I've read that research has shown 3 months capox to be as effective as 6 months. Does anyone know if this is the case for the tablets only? I did ask and they said NICE guidelines are 6 months for Capecitabine.

Thanks :x:

Lirio345

Good morning @Lizsa, I think this is all good stuff because you have a plan now that you are reasonably happy with.

Starting chemo is always daunting, because of the unexpected, but your team will do everything they can to minimise any side effects - sometimes it takes a bit of trial and error but there is nearly always a solution. You’ll be asked to keep a symptoms diary to help them get the medication right for you and you will be given a 24h emergency number to ring if you need advice.

My understanding is that six months is the NICE recommendation for Capecitabine alone. The Scot trial which looked at 3 months v 6 months was in relation to CAPOX (Capecitabine and Oxaliplatin) or FOLFOX (5FU and Oxaliplatin), and I am not aware of any research involving Capecitabine alone, but somebody might have some more up to date experience than me.

You could of course search Capecitabine using the box in the top right hand corner but do bear in mind that human nature as it is means you might read about lots of problems rather than the stories from people who sailed through their treatment!

Take care and obviously please stay in touch, Kim :x::x:

Mark McC

Hi @Lizsa

I had capecitabine tablets as part of a Xelox treatment ( with Oxaliplatin infusion ). I was made aware of all the possible side effects as I’m sure your oncologist has shared, but it doesn’t mean you’ll get them all. Tiredness, lack of appetite & neuropathy in fingers were my main side effects and I occasionally took anti sickness tablets, but had gloves and plastic handled cutlery. After my seventh round I did get the vomiting and nausea. I had 7 rounds in total, 4 before surgery and 3 adjuvant as precautionary mop up ( it should have been 4 adjuvant but my platelet count went right down and I was really fed up ). It was a tough decision on adjuvant for me as I knew what to expect but wanted to give myself the best opportunity and not regret anything later.

Hope that helps and good luck.

Liz Blakelands

@Lizsa
Good morning, glad you had a good meeting at the Oncologist. I had Capecitabine for 6 months 3 years ago. As Kim @Lirio345 says we are all different and the thing is to let your team know of any side effects and they can mitigate for them.

Personally it was not too bad, and the effects were cumulative. So first couple of cycles I just felt a bit tired. Them I started to get a bit of sickness in morning which nibbling on a rich tea biscuit sorted, dry skin, dry eyes and periperal neuropathy and a really unusual one, my finger prints disappeared.

When I look back (I wasn't on this forum then) I think that the important thing is to do a couple of things to stop getting the side effects. Really pay attention to what is happening to your body. Lots of body lotion and foot lotion. Protect your hands from hot and cold, so use oven gloves to go in freezer even if you don't have peripheral neuropathy. Get some good eye drops from an optician and use so you don't get dry eyes.

The 6 months was soon over, and within about 3 months I was side effect free, except for finger prints and dry eyes.

I have never regretted having chemo.

Chemo can be a good excuse to do lots of pampering.

I hope you are someone who sails through with no problems, best of luck
Liz :x::x: