Hi Jo,
Sorry to hear you are suffering so much, and hope the dose reduction lessens the side effects.
You ask if anyone has been on more than 6 months - yes! I’ve been on it for nearly 10 months now, but that is nothing compared to our “Xeloda Queen” who has 8 years under her belt.
Best wishes,
Julie x
Hi girls Tina I know you can get upset tum on this I have it but only for a day norm I take a few tabs they norm help also hot water bottle on tum helps with cramps you might be better on next cycle it’s weird why it’s on the week off mine is but also I drink loads of water so maybe that is why my se are minimal my back hurts now and again this is because of the bone marrow hope it settles soon just mention it to onc if you get luck with cream I’m gona ask enjoy your day tc Laura … Jo sorry your feeling so bad I’ve been on it since jan at the moe I’m fine but I do drink loads of water they did mention to me about a bad mouth make sure u mention it to onc they will give u some stuff for it I hope the reduction can help you also I know plp who are having it for 2 weeks on 2 weeks off and small doses but over the 3 wks so they can do bits hope u can enjoy y day. Hi to everyone else hope you are all doing ok and the next ct are gd lots of hugs Laura xx
Hi all,
I’m another one on Capecitabine and having pretty bad SEs. Very very fatigued, absolutely no appetite and have lost a fair bit of weight since I started cape in December. Now on day 10 of cycle 6 and am now debating whether to stop taking the rest of them until I see onc. CT scan this Wednesday and see onc following Tuesday. Figure if I come off them now it’s not going to make any difference to the scan. I found IV chemo a breeze compared to this. Anybody else stopped taking their pills or any thoughts on this.
Hi oneday - think you should probably ring your onc to let her/him know you feel the need to come off capecitabine tablets a bit early this cycle. You don’t say what dose you’re on, but SEs are usually in direct proportion to the dosage, and it might be possible for your onc to reduce your dose or change the timing of your cycle. I’ve been on a very low dose (1000mg x twice a day, two weeks on & one week off) for over six years (8+ years on for bone & liver mets in total - I AM that Xeloda Queen), but others here are on different regimes, e.g. two weeks on x two weeks off, and some of us (e.g. Julie) are on daily low-ish doses, which have been mentioned by my onc as a possible future option.
Jo - so sorry you’re having all those problems - again, maybe go for a dose reduction or timing change. We all respond so differently to our treatments, but I know some of us just have endless problems with capecitabine, and so need to talk to onc about other options.
I’m coming to the end of a six-week capecitabine-break - pestered my onc for some time off for vile hurty feet, then he gave me more time off when he actually saw them (I think his comment was “ew”). Will probably be back on the peachy pills in a couple of weeks time, as they’ve worked well for me.
Marilyn x
Thanks Marilyn
On 2000mg twice a day. 2 weeks on, 1 week off. Problem is can’t speak to onc or BCN till Tuesday and really cannot face another 4 days of them. Think I need a break. Started on Taxo August last year but stopped working after 6 cycles and been on Cap since…body telling me it needs a break.
Hi All - Im getting a bit worried about starting this chemo as so many of you are having such a hard time! It seems like most of you - if not all - have had a dose reduction. In wondering if i should START on a lower dose and then increase it if im ok. Ive got a really important weekend at the end of my first cycle and HAVE to be ok for it!!! I guess i will just have to talk to my onc - but just wondered your thoughts?
Hugs to all having a tough time and those with difficult decisions to make.
Sadie Xx Xx
Hi all,
I’m just coming to the end of my week off at the end of cycle 2 so a relative baby yet and not yet been scanned (end of cycle 3) to see if working…but just to say little in the way of side effects yet. Nothing during or after cycle 1. Dryish hands and a blister between my toes which I’m not sure if is related to capecitabine or tight shoes or both! over the last few days. Prior to starting I saw dental hygienist and had a tooth wash and brush up! Also got my udderly from amazon. I’m taking 2000mg bd but am a large (too large!) lady. Onc said fatigue is usually cumulative as no of cycles increase and I think i may be a little more tired this time. But hopefully all new starters will have as few probs as i have so far…just hope its working! Pamx
Hi sadie I’m on 3800 a day 2 wks on and one wk off compared to others it seems a large dose but my nurse sd it’s low … Ugh no but also you might be lucky like me no se at all can go out do all my chores apart from iffy belly now and then my feet a little red but nothing major I don’t even feel I’m on chemo but like I’ve sd I drink loads of water over a litre each day I’m sure that helps have word with onc but norm they do it other way rd. one question the onc sd as getting on well if next ct ok they will see me every 6 wks so I’ll bring home 2 courses and to ring if and probs never heard of that as anyone else thanks laura tc all y cap buddies xx
Hi all
hope everyone is enjoying the long Easter w/e? Pouring down here today- typical bank hol weather!
Just wanted to reassure sadie re the se’s + dose for 1st cycle. Sadie I’m tall + overweight + am having 4000mg per day! I found the se’s to be pretty much non existant on cycle 1 + u know how poorly I’ve been. In fact I started feeling less breathless etc after just a few days. Whether that can be attributed to the xeloda so soon I don’t know- but the important thing is I haven’t had any of the nasty se’s even though I was so poorly when I started + had just done a hellish course of wbrt + I’m on that high a dose. Try not to panic, we are all different but I’d say defo go for highest dose + it can be amended if u struggle. I’m sure it won’t spoil your big w/e. My tum got a bit delicate right at end of 2nd wk + I’ve had a rough few days if I’m honest during my week off but maybe I’ve picked up a bug or maybe it’s the xeloda. All in all though so far so good. Xx
ladies can I ask about this hand + foot syndrome? My hands are pretty dry already but ok using e45 + udderley. To be fair they are always dry as I must wash them 100 times a day takin my little boy the loo, touching the cat + general OCD about hand hygiene lol. I’m just wondering how quickly the foot probs can come on? Literally overnight or does it build up Very grdually over time? Also at what stage/. cycle did it happen? I only ask as we are planning a no expenses spared trip to eurodisney + are booking to go on 18th of this month. Seeing my onc on tues + will hopefully be starting cycle 2 plus 1st iv bone strengtyeners. Hoping she will be happy for me to go, bloods will be fine etc. I’m just worried that I could book later this week + by the time we go next wk (god willing), I might have foot probs. Not good when walking around theme parks- especially in my case when already contending with severe s.o.b. Any advice would be great. I’ve heard some talk about vit b6? Can anyone recommend this or anythin else??
Thanks ladies
tina xx
Hello all
Can only comment on my experience obviously, I am on cycle 11 and my feet haven’t caused me any problems so far, the nails on my big toes have gone dark and the bottom of my feet look pink sometimes. Have been using Aveeno cream, just hope I am not speaking to soon.
My main s/e is feeling very tired half way through the day and I do fell nauseous quite often and look really washed out which I hate, makeup does’nt even help on thoses days, having one today half way through my cycle.
Jan
Hi All
I am just about to start with Capecitabine and have already started using cocunut oil on my hands and feet just in case. I have been following this thread and see that the side effects are wide and vaired and can change each month! the only thing that worries me is the sickness as I have a phobia about being sick but can only find a few comments about this.
I am going to try and get the uddely from GP and will start drinking a litre of water each day. I will basically try anything to see if it will help. Not been told dose yet but is two weeks on a one week off for 4 cycles before they scan again. Got secondary breast mets now in lungs.
Karen
Dear all
Tina and sadie - I think everyone different on cap but I had severe pain at met sites cycle 1 second week. Second cycle I got the painful feet and was day 9 and I literally woke up and soon as I walked realised my feet were really sore bright red and hot. They got worse and we stopped on day 12. I got the mouth ulcers day 10 and whole mouth throat ulcerated with 1 cm ulcers - is v painful and couldn’t eat.
I was using diff lam but will be using a lot more next cycle in day to try to prevent ulcers.,
I’m on a lower dose but worried not reduced enough as we are away 2nd week of third cycle and I just want a break feeling ok with kids. Last 2 breaks have been spoilt with me feeling Ill.
My onc has prescribed high dose b6 but wish I’d been given it first then may not have got foot problem. Feet settled in 3 days but mouth still not healed and due more tmrw.
Hope haven’t put you off as most seem to have no problems and I was told I was unlucky to get both and most se are dose limited so they play around to get a dose / regime to suit us.
Amazed to hear you have been on for 6 years and still on and hope and pray the rest of us have such a fan results and thankyou for sharing
Dose seems to vary hugely as I’m only on 1500 2x day now.
Love Jo x
Hi Girls, I haven’t posted on here in a couple of years but am friends with Marilyn and Belinda and have now joined the xeloda gang. I’m only on 1500mg of xeloda bc I’m doing radiation. Then when finished with rads will go to 3000mg. I have lung mets and was on vinorelbine for 5 yrs. My tumors didn’t grow but lymph nodes in chest enlarged and are pushing on my right brohncus and upper lobe of right lung has a partial collapse. They are trying to shrink the nodes in hopes of the lung not collapsing anymore. SOB and hoping that improves some too. Worried but trying not to panic. Will finish my rads on Thurs. I have had mets to lungs since Nov. 2005. Also just to let you know I live across the pond in the USA. Have a great day. Gracie
Hi funny face welcome to our thread 7 yrs with lung mets that’s a very long time I’ve got lung mets was dx a yr ago hope x works as well for you give us all hope tc Laura
Hi Gracie - welcome back to the BCC boards and to the Xeloda princesses thread. 
x:heart:x
Hello all,
A post to offer encouragement:
I went for a check up today, and my oncologist is happy that I am still being kept in remission through the continued use of Xeloda. I’ve been on it since July last year, and I shall now continue on the same dose (1,300mg x2 daily, but every day, no weeks off) until my next check up in June 
I have a couple of areas that give me occasional twinges, and have a slight degree of hand/foot syndrome in my feet, but otherwise am pain free, and my total drug usage now is limited to Xeloda, Zometa, Clexane and Furosemide (the latter two due to a DVT last September).
Best wishes to everyone,
Julie x
Hi Everyone…
Hope the sun is shining wherever you are!!
Geewhizz / Julie - thank you very much for your post. Gives me hope!
Funnyface - Hi - Lung mets since 2005 - wow!! I hope the Cap / Xel works for you very soon and the radiation is going ok.
Hi Hope / Jo - Goodness it sounds hard work! The B6 is interesting…i will ask my Onc for some!! Hugs.
Karen - Sounds v similar to me and maybe we are starting this chemo together. Im due to take my first on 16th - how about you? Lots of water sounds good!!
Jan - Fatigue is really hard! I hope you have had some energy over Easter to enjoy yourself?
Tina - Hi - Message to you on the Trip neg thread!! Hugs and Disney Dreams!!
Laura - 3800 sounds LOADS! But you seem to be coping ok! Hospital everyb 6 weeks would be amazing!
Herbgarden / Pam - thx for sharing yor story. I hope I follow your path!
Hi to everyone else reading and lurking!
Im due to start on 16th Cap / Xeloda - so cramming as much as I can in before! Off to Dartmouth for the weekend. Hugs to all.
Sadie Xx Xx
Hi all Tara I’m ok a few belly cramps tonight but still doing ok kp up with the water I’m sure it helps me I’m surprised the onc sd that as mine told me most of us get on ok weird how they all dif sadie hope u get on ok u never know we cld be the lucky ones se wise not that I want my other ladies to suffer jo hope y feeling ok Tina hope y ok how did eyebrows go did you get anywhere mine have grown but can’t shape them now weird for sum reason hi to eveyone else off to bed with hot water bottle hopefully ease my belly love hugs to u all Laura xx
Soz all wrong thread lol x
Thanks for the welcomes!! Finished radiation today. Onc is going to call me Monday to tell me when to start the full dose of xeloda. Scan in a month to see if the radiation helped me. Glad to be finished with the rads. Gracie