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, 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 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.
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!
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 Everyone, just wanted to say thanks for this thread and all your helpful posts. Just started on this one after 14 months of Tax / Gem, have been extremely lucky so far re side effects, ie none other than more tired than usual, can only hope it continues!!
I am only 7 days in, but haven't seen or felt any difference thus far, as both supraclavicular and mediastinal nodes are affected, I can see and feel any change. I know I know, I am being over hopeful, but did anyone get a result quickly or did it take a few cycles?
Hi Claire, You too had 10 years between your original diagnosis and secondaries. My original diagnosis was Feb 1998 I had lumpectomy with 6 months chemo and 5 weeks radiotheraphy. I had 10 years with no problems and then in 2008 my secondary diagnosis which was a huge shock. I too have a bone infusion every 3 months. I have found these forums a lifeline and I hope someone comes along soon to advise with your blood count worries.
Thanks for your quick reply. I have multiple widespread tumours in the bones (spine and ribs) and in lymph system. Haven't had scan as yet. I take Bondronat for the bones. I was first diagnosed with primary in 1996, then in lymph system in 2006, and secs in bones 2008.
I have just finished my 3rd cycle and as yet have not had any problems with my blood count. My problems are excessive joint pain, indigestion, which I have now got under control and tender hands and feet. Sorry I can't be of any help but hopefully someone else will come along with some advice. Have you had a scan yet to see if the treatment is working. I haven't and my secs are in Liver, Lungs and Lymph with a small amount in bones.
Hi, I am now on my fourth dose of Capecitabine and am feeling low. I had a blood transfusion before starting the first dose, and needed another after the second dose. I am now feeling very dizzy again and know this is the sign that my red blood cells are probably low again. I feel very frustrated as there is nothing I can do about the blood issue, although I can treat the other symptoms, ie hands and feet, diarrhoea, constipation, and acid indigestion that I get. I'm on a lower dose, 1300mg twice a day, and my onc said he wants to increase it to 1500 so that the toxicity levels don't increase. I'm worried that he'll take me off this chemo and I don't know what other treatment options there are, since all the other chemos I have had in past years have all been much harsher and difficult to cope with. Have any of you had problems with your red blood cells on this drug?
Thanks for your help, Claire
Hi, I have arthritis of knees and hips and find when I am taking the tablets 2000mg twice a day I am absolutley crippled by the 10th day of the cycle but it improves greatly after I have finished the cycle (back to the pain I have normally) does anyone else experience this?
Hi Jackie, Thanks for that. I am sure you are right. I have an appointment next Friday so will ask then. I feel absolutely kn.....ed at the moment having just finished this 2nd cycle so am looking forward to a rise in my energy levels this week.
Love Lesley xx
Hi Lesley, I presume the timing of the scans varies for each case. In my case I have a ct scan every 4 months.I'm sure if you ask next time they'll be able to tell you.
Hi, Just an update on the heartburn/indigestion problem. I spoke to the Sister at the Oncology unit yesterday with regards to getting the Omaprazole but when I mentioned I had some Lanzoprazole that I take when taking anti inflammatory tablets she said to take 30mg aday of those and having taken them for just 2 days there is such a difference. I shall ask for the Omaprazole when I see the Onc on the 22nd but feel much better now.
I haven't been told yet when to expect a scan to see if the Capecitabine is working, how many cycles is it usually?
Thanks Lesley xx
I noticed you were asking about working whilst on capecitabine. I was on it for nearly a year (worked very well initially but then unfortunately my liver tumours started to grow back). I did find the capecitabine very do-able and indeed continued to work throughout (for the NHS in a fairly busy clinical role with preschool children). Got tired at times but nothing I couldn't cope with. So like Jackie has said, I was able to lead a pretty normal life.
All the best Kay
Hi Mel and Maddie,It does seem to be a drug that you either tolerate brilliantly or you can't take it at all.I'm one of the many lucky ones. After my original diagnosis in 2001 a small tumour was found in my liver in the summer of 2006. I had Taxotere (yuk!)and then in March 2007 I was put on Capecitabine.Around that time I made the decision to leave work as I didn't have much hope for the future, we could afford it, and I wanted to be able to spend more time with my husband. He repaid me by going off with another woman a year later, but that's another story.
I started on 4000 mg a day but my onc said I could reduce it to 3600 a few months ago to help with the hand/foot problem. It hasn't stopped it being effective, as my tumour remains stable.I do get sore feet, especially by day 14, but then I have 2 weeks off (that's another thing, I'm now on a 4-week cycle)and they heal up. The Pyridoxine (3 tablets a day) really help. My hands are often sore but I'm just so grateful to be alive I can live with that. They're certainly very bad at the moment, but they've been like that since we had this terrible cold weather.My hair is generally in the best condition it's been for years, apart from going limp and lifeless since the weather got so cold. Normal winters don't affect my hands and hair at all, but this one is exception !
I do hope Capecitabine treats you as well as it has me and many others.
You say you have been on this drug for 3 years. I am just starting my 5th Cycle 1500 mg twice daily. Apart from my sore fingers I feel really good and have got my life back again. I had many lymph nodes affected and now have secondaries in my muscles around my shoulder and chest wall. The fluid on my chest has almost gone completely. I am frightened that if I stop this drug that the tumours will grow again. Can I just ask if you ever have a break from taking Capecitabine and if you do how long break do you have. What strength are you taking? I originally started on 1800 mg twice daily but it has been reduced twice since then due to my hands and splitting finger tips.Do you notice that your hair is thinning at all? Mine just seems to have stopped growing!! Sorry to ask so many questions but would really appreciate your comments. I am due to have a scan after the 6th cycle then my oncologist will review the situation. It scares me a little that my whole quality of life is based on me taking this drug, It really is a wonder drug as far as I am concerned. I have had FEC and Taxatol in the past but Capecitabine has been the most efective for me. Love Maddie x
I've been on Capecitabine for nearly 3 years now and the oncologist recommended Omeprazol for the heartburn. I agree, it's a perfect remedy and I never have heartburn unless I forget to take the tablet. My oncologist also prescribes me Pyridoxine for the hand/foot problem and it really helps.
I'm one of the lucky ones who is able to live almost a normal life with Capecitabine.Good luck to anyone just embarking on it.
I take Omeprazole everyday too for heartburn. Just one in the morning. The come in different mg. Ask your Gp to prescribe some for you. it shouldn't be a problem. Good luck with your ongoing treatment. Love Val
Just wondered if anyone has suffered from Heartburn whilst taking this chemo and if so have you taken anything to help. For the first week i've been ok but now I'm on day 10 of 2nd cycle and the heartburn comes on early evening and gets worse after i've taken the 2nd lot of tablets. I did experience it with the 1st cycle but really only on the last 2 days. Apart from feeling a little tired thats my only side effect at the moment so things aren't too bad but would appreciate any suggestions.
Hi Lesley you may be absolutely fine..I feel really well on this chemo..it really doesn't feel like I'm on any treatment at all..some of us find this chemo really kind..xx.
Hi Dawn and Val, Thanks for you help I've just taken the first 4 tablets and hope I don't begin to feel sick. I've had Oatibix for breakfast Val and wonder if I will feel the same about it when I've finished the treatment as you do about Weetabix. I've never been a breakfast person so I think the morning dose is going to be the hardest to get down.
Thanks for the tips about the hands and feet. I have already bought the cotton socks and gloves and will start creaming today.
I feel very apprehensive about all this but I know I'll be fine its just something new going into my system and not being sure how my body will react.
Love Lesley xx
Hi Lesley, I have been on Capacitabing twice. The first time was about 3 years ago. The second time was from April this year for 8 months.
The first time I had really sore feet and hands. So bad that I couldn't walk around the house without pain (It felt like walking on broken glass), so my dose was reduced and this helped. I found out more as time went on and only wish I had known more when I first started this chemo. I was rubbing in the cream into my feet far too much. It bursts the blood vessels on your hands and feet......yes you do need to moisturise them, but don't massage the cream in too much. Put on the cream, rub it in lightly, then put on soft socks to allow the cream to absorb and it also stops spoiling your bedlinen.
When I first started the tablets I was on 4 large and 2 small I think, twice a day. This year it was 2 large and 1 small, in the morning.....then 2 large and 2 small at night. This time my feet were not sore but the skin was really dry so I looked after them more carefully to avoid the agony I had first time around. I think the number of tablets you take is determined by your weight when you first start them.
I did suffer from loose stools and nausea but I used the tablets they gave me and both worked well. I did find it hard to eat something at night to take with my Cappacitabine, so sometimes had to force myself to eat something when I didn't want anything at all....Now that I have finished this chemo, I have gone off wheetabix etc completely.... If I can help in anyway regarding this chemo please just ask. LOve Val
That is the same dose as me. I take first 4 tablets in morning about 8.15 and then evening lot about 7.30ish - depending on kids going to bed properly lol.
You have to take within half hour of having or had food. So dont take on empty stomach.
I have some udderly smooth cream which putting on hands and feet, to try to help when they start to go "funny".
I have not taken any antisickness tablets at all, as have not needed them yet. But everyone is different, so you need to see how you react.
Anyway, hope you do ok on xeloda and it works wonders for you.
Hi, I'm starting Capecitabine tomorrow 2 x 2000 and wonder if anyone has any tips on how and when to take it. Also when i've had chemo before (once at my original dx 12 years ago and last year weekly Taxol) I took the anti sickness for the first few days and was never sick and was thinking of doing the same, has anyone any thoughts on this.
Hi Zippy, I too developed really bad hands and feet after 4 or 5 treatments of Capecitabine. As one of my happiest occupations is long distance walking being turned into a cripple hardly able to walk across the lounge has been particularly depressing. But was given a week off to recover a bit and then dose for treatment 10 onwards was reduced by 10% which has made a huge difference, can even manage short walks now. So it seems a small change can make a big difference.
love, Ariadne xx
Side effects didnt really kick in till cycle 5, now on cycle 8. Its ok have good and bad days 🙂 big toes calmed down a lot and doesn hurt as much althou sore to touch.
waiting for scan ap should come thro soon 🙂 decision day hopefully dec 3rd 🙂 all being well, as new oncologist and ive just been pencilled in his appointments schedule as they havent officially got appointments set up! great eh! so wait and see - should get results of scan then 🙂 xx
Glad to hear your feet are improving and hope they continue to do so.
Your hands and feet problem sounds awful, where abouts in the cycles did you first notice it? was it early on in the treatment? Hope you get a scan appt. soon and its good news, best wishes, Jan x
Im on my 8th cycle of cap 4000mg a day 2weeks on one off, have sore hands with splitting behind nails and sore feet and this week my big toe nails are coming loose....but i have solved the flaking feet problem with using 'boots aqueaus cream' its about £4 i think for 500g - bargain! I use it morning and night and during the day if i remember! Much better than anyting else iv tried !
Also, for those with bad feet do you know you are possibly entitled to Disability Mobility payments (on top of DLA - Disablilty Livin Allowance see your Macmillan oncology social worker - mine helped me with my form) which helps for paying for whatever you need to help you and also a blue badge for your car which is so helpful when needing to nip to the shops and you have very sore feet and cant walk far or having a tired day!
Im waitin for an update scan before the new onc decides whether im stayin on cap or coming off for a break - last scan in sept (after 4 cycles showed up to 50% shrinkage!) hoping this next scan show more shrinkage 🙂
Hi Dawn..we are on the same dose..like Kay I notice if I miss moisturising..I use Udderly cream once in the morning and once at night for feet..and every so often in day for hands.
Hi Pipkins, I was on 2,300 mgs twice a day to start with. My heels became a problem, dry and cracked. So went down to 2,000 mgs each dose and I did notice an improvement quite quickly..Good Luck..x.x.x
Hi Caroline, I hope the chemo is found to be working well for you and both your hands and feet improve very soon..xxx
Glad to hear that you haven't had any side effects as yet - and hopefully that will continue! Do think you're being sensible though when you say you are going to start creaming now. I had very mild side effects with the first cycle but then the hands and feet were much worse 2nd cycle (but I hadn't creamed them regularly).
Take care Kay xx
Catching up with some posts.
I am now halfway through my first lot of Xeloda/capecitabine. I am on 8 tablets a day, 4 in morning and 4 in evening (each tab is 500mg each), so I am on 4000mg a day.
As yet, I have not noticed any side effects though, am I in for a shock soon. Got my cotton socks and gloves through today, so gonna start creaming and oiling hands and feet everyday now, although they are in a right state anyway with my rheumatoid arthritis. Feel like an old lady, and not 41 LOL.
Anyway, hope u are all OK, and thanks for all the sound advice for all of you that have had or currently have xeloda.
Thanks for your replies, saw onc. today and she has decreased my dose from 2300mg twice a day to 2000mg twice a day so I'm hoping for a little improvement. I start my second course tomorrow for 10 days then 10 days off, hopefully this will deal with my lung 'nodules' and any other bits in my bones which they think i have even without my bone scan results. When does the hand/foot nasty usually start?
I am on my 4th cycle of this and in the beginning I suffered from Diarrhea (sp) but the onc reduced the dose I am on 1500mg morning and night and I take them for 2 weeks then a week off.
The worst side effects have been my split fingers and feet which or so sore.
I don't know yet whether its working for me its early days. I have mets in lung liver and lymph glands.
I am keeping everything crossed
I am also on cycle 9 of Capecitabine and Lapatinib and found that the diarrhoea stopped when I changed to one week on one week off schedule. Maybe it's worth asking about this for next time.
Best wishes Gemini.
I am on cycle 9 of Capcetabine and can relate to your probelms.
My dose was reduced from 14 days to 12 but I still find when i am on my "week off" my diahorrea is not nice. I take Loperimide but to be honest I sometimes feel I might as well take smarties.
On the positvie side (see my other post) my lastest scan showed things are stable with my bone met and that has to be worth it. When my diahorrea is bad I just go to bed for the day - not easy with a 13 and 10 year old.
Thanks Marilyn, Belinda and Val. I just find it so strange Im having these probs now but didn't have any with fec or tax. Anyway I will carry on, maybe things will become slightly easier in time. I see my onc. on Wed. when i will get the results of my the bone scan I had today, I will mention all to him, thanks again. Best wishes
Hi Pipkins, I am on round 9 of Capecitabine and know exactly how you are feeling on these pills. I have had all of your symptoms and I do not know how some people manage to go throught he whole process without side effects. I have had my pills reduced twice and am now on half the amount I was on 3 years ago. I had them reduced because I had very severe hand and foot syndrome. I am still having bowel problem even now. My reduced amount is 2 large and one small, in the morning, and 2 large and 2 small at night. ( I think your weight has something to do with the amount). But my symptoms are always worse in the evening. But I too have tablets to take for both nausea and loose stools and they certainly do work. Give it time because when I started the chemo the side effects were harder and they became easier as time went on. Hope you follow all this as it is hard to write down and make sense.....if you know what I mean......But the good news is that the chemo really works.....this is my last cycle for a while and I have been on it since April. Take care....and best wishes, love Val XX Ps the week off tablets I begin to feel normal again!!!
Hi there, I'm another capecitabine user..when I was given my first lot of tablets I was also given Imodium and anti nausea tablets and was told to contact my Onc or my Onc's team if I had any problems.
Luckily I have never needed the tablets but as Marilyn has mentioned your dose could perhaps be lowered and still be very effective..I think most of us are started on a high dose. I hope your next cycle is easier..xx
So sorry you've had problems with your first course of capecitabine. I've been on this treatment for almost six years -- it's worked well in reducing my liver mets and helping stablise my bone mets, and I'm on a low dose now (1000mg x twice a day). Usually, those of us on this treatment have it in three-week courses: two weeks on, one week off, so you must be on a slightly different regime. Those of us who have been on this treatment for a while have usually found that our side effects are determined by the dose: higher dose = worse side effects, especially hand/foot syndrome and digestive problems. Certainly, a lot of us have experienced constipation and/or diahorrhea (sp?) on this treatment. There's a lot of information about capecitabine on these forums (you can search for posts), or you might find it helpful to speak to the BCC helpline (number at the top of the page). And, of course, your oncology team will have plenty of experience in dealing with the effects of this treatment, so you might want to talk to them, or to your Mac nurse.
I do hope you'll be able to continue to tolerate this treatment, and that it works as well for you as it has for many of us here. And please come back and let us know how you're getting on.
I finished my first 10 day course of Cap. last Sat. (1st Nov.), how long do these side effects last for? I've had nausea and sickness since I started taking the tabs. and diarrhea?(whatever!) since I stopped. I know I shouldn't moan but......