Anyone on capcitabine with hand/foot syndrome who can offer any good tips for treating this please? My hands are fine but my feet so sore I can hardley walk on them; it feels like severe sunburn on my soles. I’m rubbing in high urea content foot cream twice a day and keeping my feet as cool as possible but it doesnt seem to alleviate the pain/symptoms…any tips would be greatly appreciated ?! I would rather not stop the therapy as its really helping my cancer thanks x
Hi Mandyr, I am on capacitabine just now and was on the same regime 3 years ago when I suffered very badly with foot and hand syndrome. I have picked up a few good tips on the way as I was doing everything wrong the first time round!..I felt like I was walking on glass and it was so so painful so I fully understand how much you are suffering. Firstly, I was rubbing the cream in too much. The more you massage the cream in the the more damage you do. It bursts the cappileries in the blood vessels thus causing the pain you are experiencing. You are correct to keep you feet cool. The Oncologist has reduced the amount of tablets this time and now I am on exactly half the dosage I was 3 years ago. My feet and hands are symtom free now although my feet are very dry and don’t look attractive! When i rub the cream in lightly at bedtime I put on thin cotton socks so that the cream remains on my soles and not on the sheets. I also take a vitamin tablet but you will need to speak to your Oncologist about this as research has not shown that the vitamin actually helps but I was so sore I would try anything and still take it. If I think of anything else I will let you know. LOve Val (Scottishlass). PS I have tumour marker in my bloods and this chemo really works for me. The markers have reduced each time from thousands to just 27…they have reduced slower though on the lower dosage of chemo. The pain reduced too and there was a noticable improvement in my symptoms. I hope it is as successful for you too Mandyr, love from Val
Hi mandy and Val…I’ve been on continuous Capecitabine since April 2008. I started on a very high dose and now still on a fairly high dose but a capecitabine dose can be tweaked if it helps with really rotten side effects whilst still controlling the cancer.
My feet are a bit sore at the mo…sometimes they are fine…I find after the full cycle they get a bit ouchy. I use Udderly Smooth Cream, it was recommended by my friend, fellow poster marilf, who has been on Capecitabine for 5 or 6 years marilf? Udderly Smooth is used by many sportsmen and women for friction burns from sailing, cycling etc. I get my cream from a cycling site, wiggle.co.uk I order it regularly, they must think I ride the equivalent of the Tour de France every weekend.
This is my first chemo, I was diagnosed with bone mets in 2003 and apart from ouchy feet I have found this chemo so doable and like you both I’ve had marvellous results. Let’s hope we all get a long time with the peachy tablets!..xx
Hi Mandyr
I’ve been on capecitabine (Xeloda) for almost six years, and had pretty much “industrial-strength” hand/foot syndrome during my first couple of years, when I was taking 2000mg x twice a day, two weeks on & one week off. After some chemo-breaks and two dose reductions, I’ve been taking 1000mg x twice a day, two weeks on and one week off for over four years. My hands are not too bad, but the soles of my feet are not wonderful. One of the many nurses I’ve met along the way advised me to change creams from time to time, as our bodies seem to get used to each type. Here are some that I’ve used:
- Udderly Smooth udder cream (not a joke!); notjustforcows.co.uk
- Eucerin – but you’re already using a urea cream
- Burt’s Bees foot cream
- L’Occitaine foot cream with shea butter
I’m pleased to see Val’s recommendations to put the cream on very gently, and I also wear socks to keep the cream on my feet instead of my sheets. The vitamin supplement she mentioned is Vit B6, 50mg x three times a day; however, it doesn’t help everyone.
One fairly certain way of reducing these side effects is to ask your onc to prescribe a lower dose, but that’s a very individual decision – maybe have a discussion about this with her/him? My onc is happier for me to have a consistent low-ish dose that keeps my liver & bone mets stable, than a higher dose that has to be stopped from time to time because of the side effects.
Hope this info is helpful, and that the capecitabine continues to work well for you!
Marilyn (the Xeloda Queen) x
p.s. Hi Belinda!!
Well HELLO Marilyn! 
see you next week! xx
Hi Girls. Can we all please keep this thread up for a wee while. I am finding it very helpful and supportive even although I didn’t start the thread. So thanks Mandyr. Belinda I posted a PM to you earlier tonight. Do you girls find that the soles of your feet are also kind of flaky? I am never sure if I should use a pumice stone on them when I am in the bath?? When I last saw my Consultant she too said she preferred if I lowered the dose, than keep on a higher dose, then have to come off it completly. Although my tumour markers are not reducing so rapidly now. After the very first dose 3 years ago my bloods showed an immediate reeductin in the numbers. But she does not go by these markers alone and ALWAYS points out that it is only an indication and that how I feel and my general overall state is very impportant. I just wish I had started this chemo last winter instead of April 6th this year. It may have allowed me to go to visit my daughter in France. We usually go twice a year to see her and take our caravan. I haven’t been this year and I feel I have missed out and am merely “treading water”. I know intelectually that this chemo is keeping me alive, but it also really impinges on life at times. Like toniught I have spent most of the evening on the loo!!! Love to you all, love Val XX
Hi again Val…just sent you a PM.
Yes my feet are very flakey…have to say they do not look very pretty but they are not so very painful these days. I don’t use a pumice stone…a friend also on capecitabine did and she had really painful problems as she was left with raw skin patches.
xx
Hi Everyone,
I have had six cycles of Capecitabine followed by a three month break. I have to say I cant wait to get back on it as I find no medication very scary. I have lung mets and although I had slight progression on Capecitabine my onc is hopefully keeping me on it, I am having a c.t. scan in 10 days time. I had no problems with my hands, I wore rubber gloves a lot and kept them well creamed with udderley cream. My feet were a problem, really painful, but copious amounts of udderley cream plus wearing thick socks and trainer type shoes did the trick. ( I found that its the friction of shoes against your tender feet that makes them worse)
Out of interest has anyone experienced thinning hair? Mine definately came out each morning when I was drying it.
All things taken into account though I think Capecitabine is so gentle compared with my previous chemos and the fact that you can travel whilst on it is a real bonus.
Lets pray it continues to work for us all!
Take care ,
Love,
Janx
Wow -many thanks ladies, what a fantastic response ! Your comments and experiences are really appreciated so please keep them coming. I’ve already emailed my consultant regarding the vit B6 supplement and the different creams…Many thanks and keep in touch !! xxxx
Marilf- many thanks for all your great tips! I’ve got onto the Udderly cream cycling website thanks…could you advise which of the creams you have found to be best…the foot cream for example??
I would love to give this a try as others rate the Udderly cream also
Many thanks xx
Hi Mandyr
I have bone mets and had six cycles of cabecitabine (with Taxotere) last year. My hands and feet got very sore and I had the dose reduced twice. I was also prescribed Vit B6. Like others I found udderly cream helped enormously. I bought both the foot cream and the ordinary cream from the cycling website and actually found the ordinary stuff better for my feet. Wearing cotton socks in bed kept my feet more comfortable, as did keeping them warm and not letting them get either too hot or too cold. My hands and feet still tend to be dry and I’ve continued to use the cream on a regular basis. When I’d finished the chemo and my hands and feet were less sore but still very dry and flaky I used Liz Earle Intensive Nourishing Treatment mask which is meant to sooth, nourish and rehydrate your face and found this made the skin feel much softer.
Hope you soon find something to help with the symptoms.
Judith
x
Hmmm . . . which Udderly Smooth cream is best? When I started using it, six years ago, you could only get one sort, with instructions printed on the tube about how to smear it on your cow’s udder . . Now there are several different mixtures available, and I’m not sure which might work best for Xeloda hands/feet. I think it’s useful to try various creams – wonderful McGrath’s Pharmacy in Tamworth that imports the Udderly Smooth range from the States (go to their website) used to have sample sachets – maybe ask them to post you a few samples??
Marilyn x
Hi Mandy I use the Udderly hand cream on both my hands and feet…the large tub.
And for Toronto…Hi my hair has actually got thicker and curlier but know of others who have had hair thin.
xx
Hi Toronto, My hair is definately thinning and my hairbrush prooves this. But have no bald patches just thin at he sides. I have been on Cappacitabine since April and was on it 3 years ago for several months over the winter period. I have really missed my holidays in France this year and feel the lack of good sunshine, nice food and wine and a proper rest. I had been having tummy problems always on the loo but am back to normal again. But return to ward on Thursday to start it all over again. Sunny afternoon here though!. LOve Val X
Hi all
Very helpful thread thanks. I have just had my first week of cabecitabine and so far so good. Only problem is that half and hour after I take my morning dose I can hardly keep my eyes open. I’m fine by afternoon and for some reason evening one doesn’t seem to make me tired although it does not matter so much at that time of day. How long would it take before hand/foot syndrom would start to show up?
Love to all Anne sx
Hi ladies,
well after following all your advise ladies my feet are still red but I can walk and the soreness has now gone-hurrah! My consultant was going to reduce my dose (1800mg twice daily) but I’ve now suggested I have my usual week off chemo this week and then see if its a problem again during my next cycle…id rather put up with red feet than reduce my dosage and give my gremlins a possible chance for regrouping!!
Many thanks for helping everyone and udder cream has been ordered in anticipation !!
Mandy xx
Anne-this hand/foot syndrome has appeared at the end of my second cycle of capecitibine (in combo with taxol for me)but not everyone gets it so please dont be worried that it will definately affect you.
Hi again girls
Jan & Val, I think my hair has thinned in the last six years, but that could be linked to Aromasin (blocks the oestrogen – so glad I haven’t grown a beard . . .) as well as the Xeloda. Or I could just be thinning because I’ll be 60 in February and am turning back into my grandpa (we looked alike when I was born – bald).
Mandy, glad your feet are responding to lashings of nice cream, and hope you like the Udder cream. I know what you mean about being worried that a dose reduction might impact negatively on your mets, but you might find just a small reduction would help with the hand/foot stuff but still be effective.
Anne, I think I had two or three Xeloda cycles before having any side effects – I was on 2000mg x twice a day at the time. You might not get anything – fingers crossed!
Marilyn (Xeloda Queen) xx
Hi Marif, I too will be 60 in February…22nd!! I too have been on Aromasin but off it just now while having Cappacitabine. I oo have been on Bondronate but changed when started chemno tablets onto Zolindronate but not on it just now as had tooth extraction recently.I was diagnosed though in 1989 then mets in 1999. Are we on a similar parrallel on this earth do you think? (only joking). LoveVal XX
Thanks girls
So pleased your feet are better Mandy I know exactly what to do if I start to get problems later on.
Xeoloda Queen - know where to come to for advice it helps to know you have been on it all this time and it’s still doing the trick.
So sorry you missed your holiday to France this year Val I do hope you are planning extra special trip for next year.
I do hope you have good result from your c.t. scan Jan - I have one tomorrow (I have to get something nuclear injected 3 hours before hand so should be glowing tomorrow night without the red wine).
Belinda, hope mine hair is like yours and gets thicker - just enjoying having some again.
Lots of love to all Anne
Val – you’re a day older (and probably wiser) than me!
Marilyn x