I finished my first 10 day course of Cap. last Sat. (1st Nov.), how long do these side effects last for? I’ve had nausea and sickness since I started taking the tabs. and diarrhea?(whatever!) since I stopped. I know I shouldn’t moan but…
Hi Pipkins
So sorry you’ve had problems with your first course of capecitabine. I’ve been on this treatment for almost six years – it’s worked well in reducing my liver mets and helping stablise my bone mets, and I’m on a low dose now (1000mg x twice a day). Usually, those of us on this treatment have it in three-week courses: two weeks on, one week off, so you must be on a slightly different regime. Those of us who have been on this treatment for a while have usually found that our side effects are determined by the dose: higher dose = worse side effects, especially hand/foot syndrome and digestive problems. Certainly, a lot of us have experienced constipation and/or diahorrhea (sp?) on this treatment. There’s a lot of information about capecitabine on these forums (you can search for posts), or you might find it helpful to speak to the BCC helpline (number at the top of the page). And, of course, your oncology team will have plenty of experience in dealing with the effects of this treatment, so you might want to talk to them, or to your Mac nurse.
I do hope you’ll be able to continue to tolerate this treatment, and that it works as well for you as it has for many of us here. And please come back and let us know how you’re getting on.
Marilyn x
Hi there, I’m another capecitabine user…when I was given my first lot of tablets I was also given Imodium and anti nausea tablets and was told to contact my Onc or my Onc’s team if I had any problems.
Luckily I have never needed the tablets but as Marilyn has mentioned your dose could perhaps be lowered and still be very effective…I think most of us are started on a high dose. I hope your next cycle is easier…xx
Hi Pipkins, I am on round 9 of Capecitabine and know exactly how you are feeling on these pills. I have had all of your symptoms and I do not know how some people manage to go throught he whole process without side effects. I have had my pills reduced twice and am now on half the amount I was on 3 years ago. I had them reduced because I had very severe hand and foot syndrome. I am still having bowel problem even now. My reduced amount is 2 large and one small, in the morning, and 2 large and 2 small at night. ( I think your weight has something to do with the amount). But my symptoms are always worse in the evening. But I too have tablets to take for both nausea and loose stools and they certainly do work. Give it time because when I started the chemo the side effects were harder and they became easier as time went on. Hope you follow all this as it is hard to write down and make sense…if you know what I mean…But the good news is that the chemo really works…this is my last cycle for a while and I have been on it since April. Take care…and best wishes, love Val XX Ps the week off tablets I begin to feel normal again!!!
Thanks Marilyn, Belinda and Val. I just find it so strange Im having these probs now but didn’t have any with fec or tax. Anyway I will carry on, maybe things will become slightly easier in time. I see my onc. on Wed. when i will get the results of my the bone scan I had today, I will mention all to him, thanks again. Best wishes
Jan x
Hi
I am on cycle 9 of Capcetabine and can relate to your probelms.
My dose was reduced from 14 days to 12 but I still find when i am on my “week off” my diahorrea is not nice. I take Loperimide but to be honest I sometimes feel I might as well take smarties.
On the positvie side (see my other post) my lastest scan showed things are stable with my bone met and that has to be worth it. When my diahorrea is bad I just go to bed for the day - not easy with a 13 and 10 year old.
Good Luck
MuddyXX
I am also on cycle 9 of Capecitabine and Lapatinib and found that the diarrhoea stopped when I changed to one week on one week off schedule. Maybe it’s worth asking about this for next time.
Best wishes Gemini.
Hi
I am on my 4th cycle of this and in the beginning I suffered from Diarrhea (sp) but the onc reduced the dose I am on 1500mg morning and night and I take them for 2 weeks then a week off.
The worst side effects have been my split fingers and feet which or so sore.
I don’t know yet whether its working for me its early days. I have mets in lung liver and lymph glands.
I am keeping everything crossed
Thanks for your replies, saw onc. today and she has decreased my dose from 2300mg twice a day to 2000mg twice a day so I’m hoping for a little improvement. I start my second course tomorrow for 10 days then 10 days off, hopefully this will deal with my lung ‘nodules’ and any other bits in my bones which they think i have even without my bone scan results. When does the hand/foot nasty usually start?
Hi All
Catching up with some posts.
I am now halfway through my first lot of Xeloda/capecitabine. I am on 8 tablets a day, 4 in morning and 4 in evening (each tab is 500mg each), so I am on 4000mg a day.
As yet, I have not noticed any side effects though, am I in for a shock soon. Got my cotton socks and gloves through today, so gonna start creaming and oiling hands and feet everyday now, although they are in a right state anyway with my rheumatoid arthritis. Feel like an old lady, and not 41 LOL.
Anyway, hope u are all OK, and thanks for all the sound advice for all of you that have had or currently have xeloda.
Love
Dawn
xx
Hello Dawn
Good luck with it
Caroline
Hi Dawn
Glad to hear that you haven’t had any side effects as yet - and hopefully that will continue! Do think you’re being sensible though when you say you are going to start creaming now. I had very mild side effects with the first cycle but then the hands and feet were much worse 2nd cycle (but I hadn’t creamed them regularly).
Take care Kay xx
Hi Dawn…we are on the same dose…like Kay I notice if I miss moisturising…I use Udderly cream once in the morning and once at night for feet…and every so often in day for hands.
Good Luck…x.x.x
Hi Pipkins, I was on 2,300 mgs twice a day to start with. My heels became a problem, dry and cracked. So went down to 2,000 mgs each dose and I did notice an improvement quite quickly…Good Luck…x.x.x
Hi Caroline, I hope the chemo is found to be working well for you and both your hands and feet improve very soon…xxx
Hi
Im on my 8th cycle of cap 4000mg a day 2weeks on one off, have sore hands with splitting behind nails and sore feet and this week my big toe nails are coming loose…but i have solved the flaking feet problem with using ‘boots aqueaus cream’ its about £4 i think for 500g - bargain! I use it morning and night and during the day if i remember! Much better than anyting else iv tried !
Also, for those with bad feet do you know you are possibly entitled to Disability Mobility payments (on top of DLA - Disablilty Livin Allowance see your Macmillan oncology social worker - mine helped me with my form) which helps for paying for whatever you need to help you and also a blue badge for your car which is so helpful when needing to nip to the shops and you have very sore feet and cant walk far or having a tired day!
Im waitin for an update scan before the new onc decides whether im stayin on cap or coming off for a break - last scan in sept (after 4 cycles showed up to 50% shrinkage!) hoping this next scan show more shrinkage 
Hi Belinda,
Glad to hear your feet are improving and hope they continue to do so.
Hi Zippy,
Your hands and feet problem sounds awful, where abouts in the cycles did you first notice it? was it early on in the treatment? Hope you get a scan appt. soon and its good news, best wishes, Jan x
Hi Jan
Side effects didnt really kick in till cycle 5, now on cycle 8. Its ok have good and bad days big toes calmed down a lot and doesn hurt as much althou sore to touch.
waiting for scan ap should come thro soon decision day hopefully dec 3rd all being well, as new oncologist and ive just been pencilled in his appointments schedule as they havent officially got appointments set up! great eh! so wait and see - should get results of scan then xx
Hi Zippy, I too developed really bad hands and feet after 4 or 5 treatments of Capecitabine. As one of my happiest occupations is long distance walking being turned into a cripple hardly able to walk across the lounge has been particularly depressing. But was given a week off to recover a bit and then dose for treatment 10 onwards was reduced by 10% which has made a huge difference, can even manage short walks now. So it seems a small change can make a big difference.
love, Ariadne xx
Hi, I’m starting Capecitabine tomorrow 2 x 2000 and wonder if anyone has any tips on how and when to take it. Also when i’ve had chemo before (once at my original dx 12 years ago and last year weekly Taxol) I took the anti sickness for the first few days and was never sick and was thinking of doing the same, has anyone any thoughts on this.
Lesley x
Hi Lesley
That is the same dose as me. I take first 4 tablets in morning about 8.15 and then evening lot about 7.30ish - depending on kids going to bed properly lol.
You have to take within half hour of having or had food. So dont take on empty stomach.
I have some udderly smooth cream which putting on hands and feet, to try to help when they start to go “funny”.
I have not taken any antisickness tablets at all, as have not needed them yet. But everyone is different, so you need to see how you react.
Anyway, hope you do ok on xeloda and it works wonders for you.
Love
Dawn
xx
Hi Lesley, I have been on Capacitabing twice. The first time was about 3 years ago. The second time was from April this year for 8 months.
The first time I had really sore feet and hands. So bad that I couldn’t walk around the house without pain (It felt like walking on broken glass), so my dose was reduced and this helped. I found out more as time went on and only wish I had known more when I first started this chemo. I was rubbing in the cream into my feet far too much. It bursts the blood vessels on your hands and feet…yes you do need to moisturise them, but don’t massage the cream in too much. Put on the cream, rub it in lightly, then put on soft socks to allow the cream to absorb and it also stops spoiling your bedlinen.
When I first started the tablets I was on 4 large and 2 small I think, twice a day. This year it was 2 large and 1 small, in the morning…then 2 large and 2 small at night. This time my feet were not sore but the skin was really dry so I looked after them more carefully to avoid the agony I had first time around. I think the number of tablets you take is determined by your weight when you first start them.
I did suffer from loose stools and nausea but I used the tablets they gave me and both worked well. I did find it hard to eat something at night to take with my Cappacitabine, so sometimes had to force myself to eat something when I didn’t want anything at all…Now that I have finished this chemo, I have gone off wheetabix etc completely… If I can help in anyway regarding this chemo please just ask. LOve Val