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.
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.
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??
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
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 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
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 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.
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 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
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.
Seems so variable how we all respond to xeloda. I'm hAving with avastin and had 2 cycles but finding very tough, much worse than taxol or carboplatin. First cycle I had loads pain at met sites and couldn't control pain.
Second cycle was stopped on day 12 due to side effects. I developed hand foot syndrome and couldn't walk with burning red swollen soles of feet. My whole mouth, gums, roof and throat ulcerated and is so painful.
I am now day 19 and still can't eat except yogurt and soup . Ive. Never suffered with mouth on chemo b4.
My onc is reducing dose by 150 to 1500 2 x day so hope enough as don't want another mouth ulcer experience as they haven't healed yet.
Has anyone been on more than 6 months ?
great thread liking all the tips. Didn't realise you could get urea cream on prescription, especially udderley smooth! Have bought 2 pots but it goes nowhere and at £8 a pop, it certainly should be available to us on prescription, after all it's to deal with chemo se's! Will ask at my onc appt on tues.
As for teeth... I posted yestrday as mine have become sooo sensitive. The last chemo I had (eribulin) really stained + wore away my teeth. Thankfully I ha ent suffered from mouth sores etc on any chemo as yet.
I'm half way thru my 'week off' and I'm feeling awful. Whether it's xeloda related or I've got a bit of a bug I don't know. Tum is really upset, cramps + seveal dashes thru night + this morn. Back is aching (got spine mets) feel Weak+ shaky, legs like lead etc.Must be rough as can't even look at an Easter egg! Been at our caravan + forgot my thermometer so I'm hoping it's not serious. Decided to head home rather than staying til tmoro as planned.
Have found the 1st cycle easy until the week off, have definately felt sig better in terms of my wheezing + breathlessness so I'm hoping that's s good sign it's helping.
Good luck to everyone + happy Easter all 🙂
Totally agree with having free dental treatment. I'm on Cape at the moment and struggling with it. My mouth is absolutely awful, I cant taste anyting properly, cant eat things I used to like.
I am forever cleaning my mouth, because food just sticks to my teeth. I go to the dentist regularly as I'm scared to death of ending up with false teeth and it costs me a fortune, as I've been going to the hygienist as well, just to make sure my teeth are at their best.
As well as people in prison, the armed forces get free dental treatment as well.
I think our free prescription card should cover dental and optician free care.
Thank you Ladies for my welcome. I will ask my team before ordering creams. You might've saved me some money!!! I like that!!
I agree about the dental treatment - people in prison and those who have just come out get free treatment for two years!!!! So, we certainly should!!
Hugs to all,
Sadie Xx Xx
I have found Aveeno cream to be very good, on my 11th cycle and not too many problems with hands and feet.
I think we should get free dental treatment, the various cancer treatments I have had over the years have caused me real problems in that department.
My Cap regime is 2 weeks on and 2 weeks off, I did 2 on and 1 off for 4 cycles but struggled a bit. Awaiting an appointment for another scan so fingers crossed its still working.
Hi all I've got a few creams my gp won't give me uddley sd they can't do it on prescription I might ask hos
From what I can gather, if you have feet problems as a result of Capecitabine, then you can get chiropody on the NHS.
Also you can get Udderly on prescription.
Before you order creams its worth asking if you can get them on prescription - I get Flexitol and Cavilon from my GP and Udderly Smooth from the hospital.
Welcome sadie I've had my feet looked at but was referred by gp but that was got I've a toenail inf I don't think they will deal with everyday feet probs hopefully someone will have the answers gd luck for 16th Laura
Hi Ladies - pls can i jump aboad??!! Ive just had a chemo break, but bone and lung mets having a party - so, trying X / Cap. Im starting on 16th so a few days to do my research. The various threads have been of great help. Just wanted to introduce myself and say Hi!! Im trip neg, like Laura. Right.........off to order the creams from Amazon!! One questions, do you get NHS choropody or pay for it?
Sadie Xx Xx
I sorry to hear your leaving and cap isn't working.
I hope your surgery goes well and that the next chemo works well for you and the se are kind to you.
Enjoy your break and do all th lovely things you want to before your treatment starts again.
Sorry to hear about your progression and that you're also leaving the Xeloda Club. I really hope your surgery goes well and that the next chemo and bone strengthener will be gentle on you, but get those mets under control quickly and for a looooooooong time.
Take care, Angelfalls xx
Can't leave the Xeloda club without saying a proper goodbye:-(
Unfortunately, we discovered extensive bone mets progression from the last scan and my onc has taken me off both Xeloda and IV Zometa. I'm currently on a chemo break awaiting a spinal surgery to help strengthen my partially collapsed C7. Then I'll be switching to another chemo and bone strengthener.
After 10 cycles - nearly 8 months in the Xeloda club! I really enjoyed your company and may Xeloda continue to work for you.
Thanks for the message! I'm doing ok after Wednesday's Taxol - no nasties to speak of yet, very mild SEs so far. Let's hope it stays that way!
A month's break from chemo sounds like great news, not just because you get a break from the peachy pills, but also because your onc must be feeling confident that you can take this break. In fact, there was some research reported on an American site recently which found that taking treatment breaks can help as it means your body doesn't become so resistant to the drugs... Or something like that! Anyway, have a wonderful time on holidays!!!
And best of luck to all Xeloda princesses and queens, new and long-term (can't say "old", can I?!!!), current and former. Enjoy the weekend sunshine!
Take care, Angelfalls xx
Angelafalls how did your cheno go on Wednesday? If you're going to have any adverse effects then you should know by noe. Really hoping this tax is good to you on the se front.
Welcome Lesley -There are loads of great tips on this site and I think I'm one of the unlucky one with regards to the side effects my hand/feet have been a real pain and I had to have a dose reduction after cycle 2 - it's bearable now but I can tell you every month has brought different se affects my oncologist thinks I unusual too!!!!
I seen oncologist yesterday and I'm having a month's break from chemo as I had a holiday booked and she thinks as it accumaltive I could do with the break anyway.
She quite concerned that the chemo has beaten me about - you never know I was on chemo and everyone tells me how well I look oh even they even knew. Anyway she ask me if I wanted to stop and put me on another inhibitor. I said that I'd rather carry on as I'm coping with the se and as long as its working. She want to do another 3 cycle scan me and then put me on the inhibitor. I asked about a manintainence dose and she was not very keen. I get the impression that she doesn't like her patients to always been on chemo. So I will have to see how things pan out.
The inhibitor she mentioned was Faslodex has anyone gone down this path and what have been the effects. Changing treatment are always scary when you don't know the outcomes.
Thanks for reading and I hope all the Xeloda Queen and Princess are doing well.
Take care everyone.
Hi, please can I join the Xeloda gang? Only finished Docetaxel in January, (liver and bone mets) was 'happily' trundling along on Letrozole, but was called into clinic this week as my markers had gone sky high (don't even want to mention the figure on here as it's really scary!) However, onc said not to focus too much on the actual number, it's just giving an indication that the letrozole wasn't working. Still terrifying though.
So, started on Cape/Xeloda on Tuesday and it just has to work!!Have already been rubbing Udderly Smooth cream into hands and feet, have had a tip from a friend that coconut oil is also really good so will be investing in some of that as well. Had a hideous time on Docetaxel so hoping this is much kinder to me.
Hi af gd luck for wed I hate I've chemo makes me so sick isn't it funny I've had taxote and taxol but no mention of any reaction I did have it with carboplatin though maybe that's why it worked for me but as sn as stopped grew within 5 months hope it works well for u Laura
I hope you're doing ok and they've got your pain under control. I'm having my first Taxol this Wednesday, so managed to fit in a quick holiday before starting! That's why I haven't been posting lately.
It's nearly 3 weeks since my last dose of Cape and I'm feeling back to normal again... Just in time for them to start poisoning me all over again!!! Oh, the joy of chemo! I don't know why, but I'm feeling quite nervous about this one. Maybe because I've already done Taxotere and the onc has warned me I'm at higher risk of an allergic reaction as a result... Still, just have to suck it and see!
Good luck to all of us! xx
Wow what great news I'm do pleased that you have shrinkage a lovely word isn't it?
Angelfalls how you doing? Do you have a treatment plan in place for the Taxol yet? Sorry if its on a nother thread just a bit out of it as I've had to have my pain relief upped and suffering the se from that.
Take care lovely ladies and I hope your all doing well on Capecitabine.
Excellent news, Laura! I'm so glad to hear this and hope it continues to do the trick for a looooooong time! I'm just catching up as I've been away for a week before starting Taxol this coming Wednesday... Hope that this'll be my magic bullet! Take care xx
Hi all well just got back from hos my ct shows xeloda is working and mets are shrinking so pleased its been a hard few days gd luck to all new plp and gd luck Laura
I'm so sorry that you had some progression capectibine. There are a few threads on taxol that might helped you.
Wishing you well with the new treatment and let me know how you get on.
M1yu - I've had 5 cycles of cap now and every cycle I've had I'vffe had different se. I've had all the cramps and the dreaded hand/foot dry mouth, fatigue strange rashes and it goes on. This month it seems to be nausea. I think as long as it keeps working I can cope - I've had a lot of pain in the pleura which is were I had secs. I've been to the pain climic and had my pain meds upped twice in the past two weeks had a good night's sleep and the pain is a lot better today.
I Wish you well for Monday I'll be thinking of you and I'm sending you positive vibes.
Take care lovely ladies.
Thanks, M. I'm ok at the moment, but may well PM you once the questions start to pop into my head... You know what it's like!
Sorry that you're playing the Waiting Game, too. As I said to Laura on the other thread, I reckon by the Law of Averages that if it hasn't worked for me, it must be doing its stuff for you... Sounds like you've had a tough cycle this time, but I hope that's just a blip and that you'll continue to get good results with minimal SEs for a long time to come.
Fingers and everything else crossed for you and all the Xeloda Princesses!
Take care, Angelfalls xx
I had weekly taxol as my first choice. Worked very well for me. I had it on a Wed, SE kicks in on Thur and feels better on Sat. Used cold cap to keep hair. Anything else u'd like to know, feel free to PM me.
Sorry to hear that Xeloda didn't work for you. I might be joining you with some disappointment next Monday when I see my onc. Have been feeling awful, tired, in a lot of pain, felt a swollen lymph node yesterday, but disappeared today, TM has gone up for 2 months in a row now. On top of all that, had what seems like a nasty reaction to Xeloda this cycle - nausea, stomach cramps, headache, high temp (!)- and yes, rang up onc and chemo was stopped for a day just in case I had an infection, but blood test came back negative. Come on, this is cycle 10, I should be used to it by now! Sorry for the little rant.
Feeling much better today, just can't wait for Monday to come now and put me out of this waiting misery.
Laura: good luck with result.
Af next tues so just the waiting game but it's hard to be positive as I know a few plp it not worked on so heres hoping x
Hi a f sorry it wasn't the news u wanted I've had taxol but with another chemo and worked v well for me but it wasn't weekly but I know a few on here who have had gd results so fingers crossed love Laura x
Well, ladies, the results are in and, after a short but sweet flirtation with Capecitabine, I'm switching chemos. There has been a tiny bit of growth in the 2 tumours behind the sternum, so my onc said straight away that the response isn't good enough and we need to look for an alternative. After discussing the options, we've decided to go for weekly Taxol. If anybody has any tips or experiences to share, I'd love to hear them. Although this is obviously disappointing, the good news is that "all the important bits are still clear" (my onc's words!!)... Onwards and upwards!!!
Hope you are all doing well and get a good response for a long time to come.
Hugs, Angelfalls xx
Thanks, Janice and Laura! I'm feeling quite calm about the results at the moment, but know I'll be freaking out by Tuesday :o(
Enjoy the extra week off, Janice. I still haven't done anything about colouring my hair. I thought I'd wait for my results first, then treat myself to a hair appt if I'm staying on Cape... No point spending good money if I have to change to a chemo that's going to leave me bald! But I look like Suzie Quatro at the moment - not a good look!!!
Welcome to the club, Pam! Fingers crossed for all of the benefits and none of the SEs. Keep us posted.
Laura, good luck to you for next week. Do you know when you'll get your results? Here's hoping we'll both be celebrating soon...
Have a great weekend, everyone! Big hugs, Angelfalls xx
Hi a f gd luck mine next wk we need some great news on here Hi to all the new plp joining us I hope the se a minimal mine have been so far xx
Hi can I join the gang as well? I started capecitabine today after loss of control of vertebral mets on exsemestane. I've been lurking on the thread prior to starting and so my udderly cream courtesy of amazon arrived today! Hoping I'm going to be lucky with s/es whilst chemo works well for a long long time as we all do!
good luck to those waiting for scans.....and to those who have recently started capcitabine. Pam
Good luck with your scan results Angelfalls. I went to the hospital yesterday to collect my 10th cycle but because I have a dental appointment tomorrow it has been delayed for a week. I also asked about colouring hair and was told it was probably Ok to use 100% herbal colourants but am still nervous to use them, anyone else tried?
Mind if I pull up a comfy seat? I'm in the Waiting Room here 'til Tues when I should get the results of today's CT scan and find out whether the Capecitabine is working or not...
I've got extra supplies of chocs, biscuits, cupcakes and some ginger beer - completely off wine at the moment, but that's a good thing - all the more for the rest of you! ;0)
Hope you're all doing OK.
Hi a welcome to our gang im on my 3rd cycle and at moe no real se on d on 14 th night other than that nothing my scan is 6th march so hoping its doing it job kp posting gd luck x
Welcome to our gang, Jo and A! Sorry you've had to join us, but fingers and everything else crossed that you'll get all of the benefits with minimum SEs... I'm half-way through my 3rd cycle and the main SEs for me are fatigue, nausea and sore, chemo mouth. I'm creaming my hands and feet twice a day, but no HFS so far... It's a very do-able chemo for most of us. Take care and good luck, Angelfalls xx