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Xeloda (Capecitabine) side effects

21 REPLIES 21
alison100
Member

Re: Xeloda (Capecitabine) side effects

i know what you mean about the eating thing, i was shaking at the thought of having to eat anything. i was lucky if i managed a cracker and the more that people mentioned food and nagged at me the worse i got. in the end i'm on steroids to get me to eat and it works. i know steroids aren't for everyone, but if it means i eat and stop losing weight then that's what i do.
al

JaneRA
Member

Re: Xeloda (Capecitabine) side effects

Hi Molster

So sorry you are having such horrible side effects. Have you talked to your onc. about lowering the dose? I had 9 cycles of xeloda and had two bad bouts of diarrhoea and some nausea...and both times had dose reduced.

best wishes

Jane

JaneRA
Member

Re: Xeloda (Capecitabine) side effects

Hi Molster

So sorry you are having such horrible side effects. Have you talked to your onc. about lowering the dose? I had 9 cycles of xeloda and had two bad bouts of diarrhoea and some nausea...and both times had dose reduced.

best wishes

Jane

JaneRA
Member

Re: Xeloda (Capecitabine) side effects

Hi Molster

So sorry you are having such horrible side effects. Have you talked to your onc. about lowering the dose? I had 9 cycles of xeloda and had two bad bouts of diarrhoea and some nausea...and both times had dose reduced.

best wishes

Jane

Molster
Member

Re: Xeloda (Capecitabine) side effects

I am on my 3rd cycle and feel every sick with no appetite at all. Find it really hard to chew and swallow and get very tearful when its time to eat. Have tried forgetting about 'mealtimes' and eat whenever I can which is sadly seldom. I am on metoclopromide and was given haloperidol for the nighttime with omeprozole to take in the morning. Ondansatron has been prescribed as an extra ant- sickness but was still sick this morning. Have lost 2 stone in 2 months.

Is anyone else having severe problems like this? I am probably on Xeloda for life as I have secondary breast cancer in liver and bones. It worries me. I never had these many problems eating when I was on intravenous chemo (AC and Tx) four years ago. I'm even ill in my week off which is quite depressing. I am being refereed next week to a hypnotherapist. Anyone else got any ideas on how they coped?

Thanks

Molster xxx

Tools29
Member

Re: Xeloda (Capecitabine) side effects

That's reassuring - thanks ladies. I guess they will either increase or decrease the dosage when they see how am getting on. Good to know some have been on Xeloda for ages and how well it works. Fingers crossed it will do so for me!

Allicat
Member

Re: Xeloda (Capecitabine) side effects

I'm on 5,000mg a day.This is my 4th that I'm taking now and it has shrunk all my tumours down(liver,lung,spine,lymph,breast).

belinda
Member

Re: Xeloda (Capecitabine) side effects

Wow congrats pinkdove..fingers crossed, I hope Xeloda works that long for me..I'm midway point into my 13th cycle..Take Care...x

ForumMember
Member

Re: Xeloda (Capecitabine) side effects

I'm on 3,300mg a day (1,650 morning and night) and this was increased from the first time I had it as I was on a very low dose mainly because my liver, at that time, was in such poor shape that my oncologist didn't think it would cope with a high dose.

On my 36th cycle!

belinda
Member

Re: Xeloda (Capecitabine) side effects

Hi Tools..don't worry your dose is much lower than mine..often people will say what dose they're on without mentioning it's their single dose and not their combined daily dose. But as we are all different heights and sizes it can vary widely and sometimes a dose is lowered due to severe side effects.
I'm on the max dose for my weight and height, 2,300mgs each dose...so 4,600mgs a day...feeling ok.

Tools29
Member

Re: Xeloda (Capecitabine) side effects

Hi all

I started taking Xeloda on Sunday so early days. No real effects so far, guess too early. Have tingling sensation in fingertips but I had that by the end of my Tax anyway.

I am wondering what sort of doses you are on - I am taking 3 x 500mg twice a day (3000 daily) but all the info I have read talks about a daily dose of 2500 mg. The leaflet on Xeloda gives a complicated formula of weight and height and body area which is completely beyond me!

Interested to hear of what sort of doses anyone is on as worried mine might be too high.

adejude
Member

Re: Xeloda (Capecitabine) side effects

Flo 62.
I was just like you - with the pains and runs and fainting, but only on the first cycle of Xeloda.

I have felt sick most of the time during the day and had flu achy pains (buttocks and back of legs), even during the rest weeks.
Onc rec. drinking tonic water and eating bananas for the aches, as I feel I take enough tablets for everything else.

Hand foot syndrome started on 3rd cycle, only my finger and thumb ends affected and was given tablets for this and I use Neutrogena hand cream 4 times a day.
Only discovered this week that there are extra anti-sickness tablets for those who still feel sick after the usual ones they give out, so goit these today along with my Xeloda.

If I feel really sick, I eat a green apple and never leave the house without a bottle of apple Lucozade - this reduces the nausea for me.

I have found that even though I don't like plain water, having at least a pint with the Xeloda does helps me.

Flo62
Member

Re: Xeloda (Capecitabine) side effects

Hi all, thanks for your posts.
I ended up seeing onc today and my chemo has been deferred a week because of my hands. He's giving me a week to 'recover' and then see how things are. Will reduce dose if clears up -if not ??? dunno!

Ripley - tum better and no more faint spells. Had D a few days in the morning accompanied with gripes but it settled down by the weekend.

Going to bed to try and sleep.

Hope you are all coping and things get better if you are having grim time.
Fiona

lizziemum
Member

Re: Xeloda (Capecitabine) side effects

Hi Ripley
No I'm not taking B6 for my feet only just started playing up this weekend. Hopefully will get something on 3rd when see on c next
Take care

Liz

ripley
Member

Re: Xeloda (Capecitabine) side effects

Hi Elaine

It's like a waiting game, isn't it? At least with infusions you know you'll get most side effects up front. I'm dreading an attack of the runs but so far, nada (probably famous last words!). I've not been constipated as such (one of my speciality subjects) but I have noticed a sluggishness. I was wondering whether it's related to the fact that I feel quite thirsty on this chemo and dehydration causes constipation. You're right to minimise anti-nausea tablets as they don't help with constipation - try cutting them in half. So far no chemo farts (yay!) and I've only had nausea once so far but I think that was due to a couple of miles of speedbumps shortly after breakfast and tablets. I don't seem to have an appetite anymore (legacy from Tax) and can go hours without eating as stomach doesn't growl to remind me. My taste buds seem to have been affected already with this one.

To be honest I feel a little paranoid about side effects full stop. I haven't had chest pain although yesterday my left arm hurt and I wondered if that was heart related. I seem to have had intermittent & brief headaches this week (brain mets, dehydration, alcohol or too much time in front of PC?). I take my last dose tomorrow morning and am wondering what my week off will be like...

I really don't think that severity of side effects bears any relation to the success of treatment - many people get good results and tolerate all sort sof chemo really well. I take comfort from Pinkdove and others here who've reported good tolerance and shrinkage from it and hope we get a similar result! Do you have a staging scan round Christmas time?

Fiona, how's your tum? Hope your week-off improved.

Liz are you taking B6 for your feet?
xxx

lizziemum
Member

Re: Xeloda (Capecitabine) side effects

Hi
I am on day 12 of 2nd cycle. Ist cycle had runs day 2 to 5 but have been ok this time. My onc did tell me that I could expect to get them wk 3 though but I was ok.
Am also suffering with feet this this last two days have been very uncomfortable.
I always have half by breakfast before take tablets with water then have other half and haven't felt sick at all. ( prescribed metaclopromide) Also on omeprazole for hesrtburn and indidestion ( onc says advisable to take it all through chemo)
Hope this helps.
Liz

ElaineD
Member

Re: Xeloda (Capecitabine) side effects

I agree pinkdove-we will all respond differently, depending in part I guess, as to our physical makeup, and strengths and weaknesses in our body in general. I wonder too, if there's any correspondence between the severity of side effects and how well the chemo is working. For example, my first chemo was taxotere, which I got through with very few problems (and very limited success).Hoping it'll be different this time!

ForumMember
Member

Re: Xeloda (Capecitabine) side effects

I've been on it for the past 2 years and have been very lucky that I haven't had any symptoms except my feet can get a bit dry.

The only cumulative effect that I have is fatigue (which I suppose isn't surprising after two years).

I have always taken my tablets with food and only water.

I do wonder though, because we are all different, that we all respond to chemos in different ways.

ElaineD
Member

Re: Xeloda (Capecitabine) side effects

I'm at exactly the same stage as you, although I finished my first 2 weeks on Thursday, so a few days later than you(but the same as Ripley!!). Haven't had the dreaded diahorrea, but have instead been constipated. In some respects, wish I had the "other", as I also have diverticular disease, and constipation is something I really must avoid. I agree with the nausea, and find it quite hard, in that it comes almost in waves, so I've been trying to keep the anti-nausea meds to a minimum. Like you, I had the clammy, faint feeling on Thursday....but did end up being sick a few times, so guess that may account for that.

I find my appetite is very depressed, although I force myself to eat, and to be honest, once I've had a few mouthfuls, can usually manage a reasonable portion.

Have either of you had pains in the chest (or am I just going for all the unusual side effects, lol?)

Flo62
Member

Re: Xeloda (Capecitabine) side effects

Thanks Ripley for your reply. I will certainly look at the xeloda website - Didn't think to google it.

Re the BCC goblin. I now copy everything on the comments box regularly as I'm typing so if I do do something odd I can at least paste it again. I had loads of probs earlier on. I've found out that if you are 'idle' for about 15-20 mins you are logged out and won't be able to post even though the screen says you are stilll logged on.
Also if you go back on the thread to look at any of the posts whilst you are in the middle of the comment - you lose it - hence while I copy it.

Hope that helps and thanks again for the info.

Fiona x

Love the bit about not acting! Ha made me laugh.

ripley
Member

Re: Xeloda (Capecitabine) side effects

Hi Fiona

My post has been swallowed up by the BCC goblin, so I hope I remember wha tI typed...

I'm afraid I haven't got any advice for you as I've also just started taking Xeloda - I am four days behind you. However, I'm sorry that you've had a rough couple of days, especially in your week off. It must've been quite frightening to almost pass out!

My onc said that people tend to experience symptoms in second cycle once the dose has built up. He also said that this chemo is primarily tough on the digestive tract, which may explain the gripey pain etc. I wonder if you're feeling this now as the dose has accumulated, or possibly in reaction to NOT taking the tablets. If it doesn't clear up soon it may be worth giving your BCN a call - also a food diary might identify any patterns in aggravating food types. There's a treatment diary you can dowload from the Xeloda website and track side effects. It may be worth a try.

In the meantime, I do appreciate how frustrating it is not knowing how or when it's going to strike. I guess it will take a couple of cycles before we discover how we react to this and can take steps to manage the side effects. Let's just hope they're minimal!

Hope you feel better soon.

xxx

I hope your tummy settles down soon

I can't act

Flo62
Member

Xeloda (Capecitabine) side effects

Hello everyone,

I know that there is a lot of info about the side effects on this drug in the forum and I have 'read' most, however can you help in advising when you got the effects.

I've just finished my first 2 weekly taking of tablets and am on the 'rest' week. I have had the worst gripes and tummy aches over the past 48 hours. Diarrhoea or the start of it commenced on Monday (last day for pills) and have had 2 episodes a day but last night I woke up with really bad tum ache and went to loo and 'all hell broke loose'. I also felt as if I was about to throw up and I went very clammy and nearly passed out. I was like this for about half an hour., My OH even got up to see if I was alright (and that's pretty rare) !

I had been generally okay, especially the first week. The second week had a 'yuk' tummy feeling and mild nausea which the anti-sickness pills took care of,but I thought this week I would be so much better as not taking anything.

I started the hand/foot syndrome last week of Epi and nearly didn't start the Xeloda as my hands were so red and sore. I couldn't believe my luck - I hadn't had one tab of Xeloda but the registrar onc knew that this would be a prob for me, so opted to carry on and be given B6.

To those who have been before etc., do the effects get worse at the end of each cycle? Does the cummulative effect make things get worse?

It's just so annoying that this chemo seems to be the one that most of you say is most tolerable and with least side effects.

Help..any answers would be gratefully appreciated.

Thanks Fiona x