I think it is DEFINITELY the capecitabine. And you are right, you are often left to deal with side effects yourself. That is why sites like these are very useful. I am not on Capecitabine anymore, but when I was my feet were in a terrible state and I did lose my big toenails. It was eventually sorted out with a combination of things - lower dosage, lashings of footcream. special non-abrasive runners socks and comfortable shoes. Avoiding contact with hot water.
Do you have a good GP? They can be of help too.
Hope you manage to sort your feet out and that the capecitabine works. It did for me for 2 years
JOY
Hi All,
Thanks for all your comments I will definitely see my GP on Monday with a view to getting an app to see a Podiatrist. Thanks for the recommendation for the silver plasters (just bought some) and may have to try the Crocs but hate the sight of them as my other half wears them all year round whatever the weather.
I am on my 6th cycle and am having a scan on the 14th April so will see if its working. I can put up with almost anything if it is but did not like the way I was dismissed by my Onc about the toes. I am going to see if there is any info on the Xeloda website about this.
Lesley xx
Hi All
Well saw my rheumatoid specialist on Thursday and he took it all seriously. Onc said nothing to do with xeloda and keeping me on my dose. Had steroid injection in my bum, and it has worked wonders. My hands and fingers back to normal, no pain, or bent fingers no more. Go back 7 weeks time to see how things are, unless flares up again between now and then, then have to ring up again.
See onc on 7th April and then get ct scan organised to see how reacting to xeloda
Feeling pretty good really on the whole, only one split on my heel, which can hurt a little but creaming it on reg basis.
Hope everyone is ok and enjoying the weather and feeling OK.
Take care all
Dawn
xxxx
Thats brilliant news Dawn, to be pain free especially at night is excellent and the fact it has nothing to Xeloda is good so you can keep on the same dose. Hope the scan goes well, mine is the 14th so fingers crossed. Toes still very sore but no splits or cracks on feet or hands.
Hope everyone else on xeloda is doing ok and others on treatment too Lesley x
Great news you are feeling so much better Dawn…x
Hi all
Has anyone else had sore eyes from Xeloda, mine feel as if I have got shampoo in them most of the time and are very sensitive to bright lights etc. My eyesight is fine they just water a lot.
Hope you are all doing OK and xeloda is working well for you.
by the way I have lost both big toe nails since starting on this drug in January, though they hadn’t fully recovered from the taxotere which I finished in October last year!
Fiona
Hi, I’ve had watery eyes too, they are ok again now. Also my sense of smell is affected…I don’t have a problem with perfume, toiletries but certain foods can now smell bleachy, have a chemical smell…whilst cooking…especially any meat.
x
Hi, I’m on my 2nd cycle of Capecitabine and was fine all way through 1st. Started 2nd cycle last week and my toes (middle toe on both feet) have become really sore despite plastering udder cream on morning and night. They look like huge chillblains but more raised, socks irritate them and its a bit chilly to get the flip flop sandals out just yet, but my doggies still need long walks a few times a day. Can anyone suggest what to put on them to ease? Savlon hasnt worked and I sat all through Jonathan Creek with them dunked in warm salt water. Also when taking this drug longer term, did anyone notice tumours shrinking/going or is it a case that they stay there but just dont get any larger? Thanks Debs
Hi Debs,
I am on my 6th cycle of Capecitabine and having a scan on the 14th April and hoping for some shrinkage. I think a lot of the Ladies on this site have had shrinkage but if they were stablised that would be something.
As for the toes if you read my earlier posts you would see I have had trouble with my big toes for 5 weeks now which began just after starting my 5th cycle and they are just beginning to improve, so I hope that yours will get better soon. I went to see the nurse at my GPs and she gave me some cream and dressings and that has certainly made an improvemnt. Roll on the better weather when we can wear sandals, or ‘crocs’ as these have been recommended by one of the other Ladies.
Lesley xx
Hi
I’ve been on capecitabine for over six years, and it’s been very effective with my liver mets – started out with many, at least one more than 2.5 cm. Very early on – in the first few months – my liver mets shrank, and some disappeared altogether. Over the years, it’s continued to control & reduce my liver mets, and for the last 18 months or so, I’ve been NED (no evidence of disease) in my liver. I’m hoping to get more time relatively disease-free in my liver – and also hoping that this drug works as well for you all.
Marilyn x
I was on Capecitabane for over two years and suffered greatly with the sore feet. What worked for me was a reduction in the dose and also increasing the interval between doses (ie I had two weeks off rather than one and this gave my feet a chance to heal up). I was also continuially using the udderley smooth foot cream, wearing athletes socks (thick with no seams) and good walking shoes. I still had very dry red feet, but no blisters or open sores which i had suffered from before. The capecitabine still worked for me in keeping my liver mets stable, but a few months ago stopped working and I am now on Vinorelbine. I don’t know if the reduction in dose had anything to do with how effective the capecitabine was, only that i couldn’t have continued with it at the full dose as my feet really were in a painful terrible state and I couldn’t walkwithout pain, so for me it was a good solution. I was on the reduced dose for about a year and a half.
JOY
Thanks ladies for the info, I will have a chat with Onc when I go again in 2 weeks. My dose is high 5000mg a day so maybe thats a bit too high for my poor old toes! Went to a support meeting last night and one lady suggested…marmite. She said if I smother the affected areas in the stuff then it will cure it. Strangely I used to love marmite but since starting this whole chemo business a year ago I cant stand the stuff and theres no way I could put it on my feet, the dogs wouldnt leave them alone for one thing, imagine the mess! No I will stick with standard remedies and see what Onc can suggest. My bumps are still huge and I feel them daily, but as Im always being told I want too much too soon so will just have to be patient. Best wishes to all. Debs x
Hi
Just for info for those suffering with capcitabane…its worth it 
Ive been on capcitabane for almost a year (in early june) and although I have recently reduced my work days to 3 days a week, i feel great and live life normally. Im having 3700mg a day.
Ive had shrinkage and another scan yesterday showed all the small deposits (i had quite a few in lungs n liver) have now disappeared leaving just 6 tumours no bigger than 16mm (originally biggest in liver was 35mm) so, dr says the chemo has worked/workin fantastically still on chemo but its so good to hear its working and doin great things
Just to second Zippy’s positive comments.
In January this year I had a tumour in my liver which was at least 8 centimetres, the onc measured it with calipers as you could feel it under my ribcage, my liver function was to pot and my CA153 was 12900.
After 3 cycles my liver function is back to normal, you can’t feel the tumour and my CA153 is 1500.
All in all it has had a significant impact for me, so hope the rest of you get good shrinkage from it too.
Fiona
Zippy & Fiona – so glad to hear that capecitabine is working so well for both of you – long may it continue!!
Marilyn x (the Xeloda Queen)
HI
just been told yesterday that i am to start this drug next week,(bone and liver mets) feeling very anxious but have just read through all your posts and am now feeling a bit better about it, have written down all your tips and hope that this gives me a feeling of more control over the side effects!
not many people seem to mention mouth ulcers? have many of you had probs with this?
I was also a bit worried that i may have taken all the armoatose inhibitor tabs, tamoxifen, arimidex, letrazol and another one i cant remember! has any one else been on anything else or is that it now just chemo to control the cancer?
thanks in advance for any info/advice
xxxx
Caroline
Hi Caroline
Welcome to “Xeloda-World” (but of course, sorry you have to join us here). Side effects are usually in direct proportion to your dose – when I started taking this drug over six years ago, I was on 2000mg x twice a day, two weeks on and one week off. It took a few cycles before the hand/foot and digestive problems kicked in - my onc took a chance and reduced my dose twice, now been on 1000mg x twice a day, two weeks on and one week off for about 4 years, with a manageable level of hand/foot problems and practically no digestive ones – did have occasional mouth ulcers, but don’t get any now. So . . . the higher your dose, the more likely that you’ll get these side effects. BUT . . . some of us (hello Belinda!) have managed to cope with a much higher dose, without these problems.
The main thing is that it worked, and continued to work, really well for me, reducing/disappearing my liver mets and helping to keep my bone mets stable. Unusually, I’m also on Aromasin – most oncs won’t give us an AI and a chemo treatment at the same time, but I’ve been on this combo since my mets dx in 2003, and my onc is of the opinion that “if it ain’t broke, don’t fix it”. I also have Bondronat (tablet bisphosphonate) for my bone mets – this has been a great success for me as well – hope yor onc is offering you a bisphosphonate, either tablet or IV, as this is “standard practice” for those of us with bone mets.
We’re all so different in the way we respond to our BC mets and our treatments, so one person’s experience might not be the same as another person’s. I do hope you find Xeloda an easy treatment, that you have minimal side effects, and that it works as well for you as it has for a lot of us here.
Regards, Marilyn x
Hi Caroline, I hope you have a good response and find Capecitabine as doable as I have. I haven’t had all the hormonals but my very pro-active Onc (I’m glad he is too) has said it’s unlikely I’d be offered anymore hormonal options…this is my first chemo and it’s still working well…just passed the 2 year mark with it. No mouth ulcers at all. I had 15-16 months of Tamoxifen and well over 2 years with Arimidex but Aromasin didn’t work and I was taken off it after a few months. Good Luck…x
Hello Marilyn! x
I have started a new thread re my experiences but have any of you suffered from low platelets? I have done one cycle on only 1000mg x 2 a day and the plan was for it to be increased gradually. But if my platelets drop further, I will have to stay on the lowest dose. I can’t see this having enough impact on the cancer.
Kelley
Hi Kelley…I found some info on platelet infusions, posted on your other thread but will post here too…sent you pm too.
macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Supportivetherapies/Platelettransfusions.aspx