Hi Nikki, I think I had stable tumour markers at first and then saw a reduction on cycle 3. The chemo is still working well for me as I approach my 2nd year on these tablets. I hope you too see the same quick and long lasting results…x
Hi Belinda, thanks for that. My team don’t do tumour markers (never worked out why some do some don’t) so wont know that, but 2 or 3 cycles seem sensible.
Cheers and long may it work for you!
Nikki
Hi everone, I’ve just started my 5th cycle of Capecitabine and the sore feet have kicked in. Main problem is my big toe nails they have become extremely painfull and 2 nights ago they became leaky. I’m taking Belindas advice of soaking them in a solution of Savlon and warm water and I am also putting a plaster over them with Savlon cream to protect and try and avoid any infection but just wonder if anyone else has had this problem and if so have you any suggestions.
Lesley xxx
Hi, yes I have the same problem with my feet. My toes get very sore at the sides of the nails and pus comes out of them. My toes are red and swollen. The soles of my feet are particularly sore at the moment (I am also on cycle 5) and this cycle the onc put the dose up as he said my toxicity levels are likely to go up if he didn’t increase the dose. (I was on quite a low dose because of previous problems with my feet). I just keep bathing my feet to keep them clean, and put udder cream on them to stop the skin splitting. I am a bit low in spirits lately because my feet are SO sore I can hardly walk and I have had time off work because of it. I don’t know what to do about work, whether to try and carry on or whether to go to my GP and get her to sign me off until I have finished the chemo. The onc says he wants me to have 8 doses. I had a CT scan on Friday and will get the results a week tomorrow, so I guess I’ll just wait and see what that shows up.
Hi Lesley & Claire
So sorry to hear you’re having such a hard time with your feet because of the capecitabine. I’ve been on it for over six years for my liver & bone mets, and my feet are a bit grim at times as well, including infections in the corners of my big toenails, and skin cracks on my heels and my fingers as well. I wonder if you might try to get referred to a podiatrist/chiropodist? I find mine really helps with the vile feet problems. Also, one of the many nice nurses I’ve met since my mets dx suggested a change of creams from time to time, as our skin apparently gets used to each cream after a while. My “favourites” (well OK, I don’t really like any of this) are Udderly Smooth, Eucerin, Bach’s Rescue Cream & Flexitol, but do try others as well. Hope this helps, and hope the capecitabine is working well for you.
Regards, Marilyn x
Hi Marilyn, Just wondered if the Toenails clear up a at all or are they always leaky and infected like mine and Claires are at the moment. Sounds horrible doesn’t it but its a small price to pay if the Capecitabine works but as they are so sore at the moment I wondered if there will be any respite. Funny how it affects the Big toenails.
Lesley xx
Hi Lesley – yes, my toenails are well and happy most of the time, just get these odd infections occasionally. I do see a podiatrist (new name for chiropodist??) every couple of months, but usually find that any infections disappear after a few days, whether I slather them in savlon or not, and whether I see the podiatrist or not. She’s a very keen “soak your feet in salt water” person, so maybe try that when infection starts? And, yes, it’s all a bit gruesome, isn’t it, but worth it for the benefits of the treatment, if it’s working for us.
Regards, Marilyn x
Hi Marilyn, Thanks for your reply it really does help to get someone else’s knowledge on these things. I am on 2000mg twice a day and wondered if your had dose has been reduced during the length of time you have been on Capecitabine.
Thanks Lesley xx
Hi again all and Lesley, we are on the same dose. I only had the one episode of yucky nails…I’ve just passed the 2 year mark on these tablets. Apart from the usual one week off in 3 cycle I’ve not had a chemo break. I had cracked heels, on and off for the first year but my feet have improved considerably since then and I don’t get any problems apart from dryness now. I hope you all notice an improvement too…and have a long, long time with this chemo. Good Luck to everyone. x.x.x
And hi from me again, Lesley (and hi Belinda!)
I started out on 2000mg x twice a day, two weeks on and one week off, when I first had capecitabine in Dec. 2003. Had a couple of chemo-breaks the following year to go on “trips of a lifetime”, and a couple of dose-reductions as well, to help my poorly digestive system, lack of energy and hurty hands & feet. I’ve been on my current dose – 1000mg x twice a day, two weeks on and one week off – for well over 4½ years now, and thankfully this dose (a) doesn’t give me too terrible side effects, and (b) seems to still be effective in helping to keep my liver & bone mets stable.
My onc has always been very keen to find a combo of treatments that would enable me to have a good quality of life, and keep my mets stable – I think we’ve found it, so I’ve stopped belly-aching at him about wanting chemo-breaks. In addition to capecitabine, I have exemestane (Aromasin, an aromatase inhibitor to deal with my ER++ BC) and ibandronic acid tablets (Bondronat, a bisphosphonate to prevent/heal bone mets & strengthen my bones).
I do hope everyone taking capecitabine finds it as effective as Belinda & I have done, without suffering too much – cream and cream again!!
Regards, Marilyn x
Hi All
I have just got my 7th cycle of Capecitabine, and have found it tolerable, with just one split on my heal, but it doesnt hurt me really. My only problem is my joints, as I suffer from a bit of rheumatoid arthritis, my joints have played up significantly on capecitabine. But the chemo hnurse said yesterday i need to get referred back to my specialist and see what he says. I have also had a couple of bad mouth ulcers but got stuff for that too now from the hospital yesterday.
To date, I dont know how well or if it is working for me. See my onc on 7th April then will have scan after that - seems wrong way round to me, but hey ho!!.
I am 4000mg - 2000mg in morning and 2000mg in evening.
Anyway, hopefully will get good results like all you other ladies.
Take care
Dawn
xxx
Hi Dawn,
I am right in thinking you started on Capecitabine in November? and will this be your first scan since starting this chemo? I started early December and am not having a scan until April (after 6 cycles) and it seems like a long time but my Onc doesn’t believe in doing scans too often and as my bloods keep coming back ok I am hoping the chemo is doing its stuff. Apart from the sore toes and my joint pain, which has improved now my GP has changed the anti inflammatory I take this is a very doable chemo.
Hoping for good results for myself and everyone.
Love Lesley xx
Hi Lesley
Yeah I did start Capecitabine in November, and had my 7th cycle on Tuesday.
What anti inflammatory are you taking. I am on sulphasalazine for my joints anyway, but also taken few diclofenic. I went to docs this morning and receptionist asking doc to see if can just refer me again without having to see them. Then hopefully he will talk to my onc too and decide best way forward. Dont want them to reduce my dosage really, but cant continue with the pain as so bad - mainly at night, suppose when body not moving much.
Yeah lets hope we get good results as I wanna be around so much longer for my babies as only 3 and 6.
Lots of love to you all. Kay hope u are doing ok. Big hugs.
Dawn
xxx
Hi Dawn,
The new anti inflammatory I am taking is Indometacin 75mg modified release tablets twice a day and as I started taking them on my week off I really noticed a difference but I am 6 days in to this cycle and am beginning to feel some pain in my knees and back so I think the chemo has something to do with the increase in pain (it does say on the leaflet that comes with the Xeloda that 1 to 10 people in 100 can suffer joint pain) so I think the drug finds a persons weak spots. I also take Amtriptoline at night and that really helps as I think it is a nerve block and really helps me get some sleep.
You didn’t say if you have had a scan since you started on the Xeloda and I also don’t want to have my dose reduced if its working and hope a scan will show some shrinkage or stability.
Its a c…p disease and thankfully my children have grown up but I feel for those Ladies like yourself with small children its so unfair but I don’t feel ready to go yet as I now have 4 grandchildren and want to see them grow.
Lesleyxx
Hi Everyone
I saw my onc today and got the results of my CT scan. I have had 5 doses of capecitabine now and he said the scan showed that it is working. He wants me to carry on, but has lowered the dose back to what it was last cycle as my poor feet and hands have suffered too much. This last cycle I was taking 1500mg twice a day, but now I am back to 1300 twice daily. I was a bit disappointed to have it lowered, some of you seem to be on a much higher dose than me, but at the same time, I am still working 4 days a week and I need to be able to walk! I am amazed at those of you who have been taking this chemo for so long and without breaks! I am glad to hear Marilyn, that you are on a lower dose and everything is kept under control. That gives me hope for the future. I have been feeling really down today since seeing my onc as he said I would need to be on this for a long time, and I had been hoping to just have 8 or so doses and then come off it. But never mind, I just hope the side effects keep to a minimum on the lower dose and I still get good results. Then it will be worth it. I also take Bondronat for the bones, Lansoprazole for the acid indigestion, Pyridoxine for the hands/feet, an anti depressant, and now he has put me on calcium tablets too. I get fed up with the amount of tablets I have to take. It’s hard to take them all at the right times. Especially being at work, but hey ho.
Best regards to all.
Hi Lesley
Thanks for that with the tablets you are taking. I am now into my 2nd week of cycle no.7 and in agony at night with joints. Trying to get appoint with my rheumatoid specialist, as online system saying earliest is 18th May. I cannot wait that long. I am also going to write to my oncologist and rheumtoid doc to get them to talk to each other and see what they come up with. Hopefully will sort things out as I cannot go on like this with the pain. My fingers and hands still swollen and hurting a bit.
Ah well, I spoke to my pharmacist in local chemist today and got some co codomal to try. But I really dont want my xeloda dose reduced to be honest, but will now see what happens.
Clare congratulations on good results. Hoping that when my next scan in april happens, it also shows some reduction again.
What a way we have to live our lives - so horrid and yet everyone thinks cos I look so well, I shouldnt worry or be upset now and again.
Hope everyone on xeloda doing ok and get good results,.
Love
Dawn
xxx
Hi Dawn, I too take co-codamol 30/500 and they do help. I am also taking Amtriptoline and I understand whilst they are an anti- depressant they were given to me as a nerve block to take just at night to help me sleep because of the pain. Its a wonder we don’t rattle with all the tablets we take.
Lesley x
Hi, I have been for my 3 weekly checkup today and showed my Onc my sore big toenails, both still a bit leaky with pus and bloody on outer side of big toes and very very sore. If I put plasters on them to try my shoes I can hardly walk with the pain. He says it is nothing to do with the Chemo never heard of Xeloda causing sore toenails and said perhaps I have ingrowing toenails, have banged them or have an infection all of which I know is not the case and would they both errupt at exactly the same time. I told him there were Ladies on this site with this problem and he just shrugged his shoulders and said he would have a look into this. He has given me Pyridoxine for the pain and redness in my feet but I am left to sort myself out with regard to the nails. He is usually such a nice man but today left me feeling it was something I have done to bring this on. Feeling a bit down so sorry for the rant.
Lesley xx
Rant away Lesley…like you both my big toenails went pretty much simulataneously…if you’re having a problem with toes rubbing against shoes…I know they are not elegant but Cayman Crocs are very roomy and comfortable. And silver plasters really do seem to speed up healing…xx
Hi Lesley
So sorry to hear your onc doesn’t seem to be well-informed about capecitabine side effects. I wonder if your GP might be able to refer you to your local podiatry service? You would get very good foot-care from a podiatrist, whatever might be causing the infections (I think it’s the capecitabine!).
Although it’s still a bit cold for sandals, any shoe that gives you more room in the toe region would be good for you now – and I think you can get “winter” crocs with furry linings.
Hope all gets better for you soon, and that the capecitabine is working well.
Marilyn x