I’ve just started on this chemo after taxol didn’t work for me. I am finding some of the side effects difficult to deal with and was wondering if maybe I have been down with a bug as well as on the chemo as some people seem to have been on this for years? The main side effects are sickness and tiredness. I spent most of the other day in bed. I have two young children who I am getting lots of help with but was wondering what other people’s experiences were with this treatment.
I’ve just started on capicitabine (with Lapitinib also) and I’ve hardly had any sickness at all, I’m on my 2nd week and have only needed to take anti sickness about 4 times altogether. Tiredness I have but I have a 4 year old and 2 year old and am still ok to do things with them every day. Sometimes have a nap in pm, have early nights but that’s it. Not as bad as when I was on Taxol at all.
So, maybe speak to nurse/doc as I think they can adjust dose quite easily. I was told not to put up with any symptoms but to phone immediately and they’ll put dose down a bit. I’m on 4000mg day - 2000 in am and 2000 in pm - what are you on?
Also, it’s really important to take within 30 minutes of eating a substantial meal and to try to keep 2 doses 12 hours apart as much as you can. Don’t ever take on empty stomach.
Anyway, please let me know how you get on. I don’t think you should be putting up with these symptoms.
Hi Kirsty, for me, this has been a very doable chemo. Your dose could perhaps be altered, lowered? My dose was lowered slightly and my tumour markers actually went down after this. Have you been given anything for the nausea? I was given some tablets from the chemo suite when I collected my first tablets. I haven’t needed to take them but Hannah is so right about taking the tablets with food. A couple of times I’ve done other little jobs before eating and have felt ill because of this. Also agree with the 12 hours in between each dose. Hannah I am on the same dose as yourself.
How quickly have your bloods recovered after each cycle Kirsty?
(There are an awful lot of bugs around too. )
I hope you (and Hannah) can have lots of time with this chemo and it’s really effective too. I’ve been on Xeloda since April 2008 so hoping your side effects will be able to be taken care of so you find you have more energy…much needed with 2 little ones. Take Care…x.x.x
I am having capecitabine and lapatinib and have had the dose lowered several times to help with side effects. I was told to take anti sickness tablets before capecitabine and as others have said take with food. I am having one week on and one week off and find that I need to sleep most days for an hour or two in the week on. I hope your dose can be adjusted to help with the problems, Gemini.
I am thinking that I had a bug over these last two weeks. My three year old has had two in the same period and one was a sickness bug so I am thinking that is why I have been so extraordinarily low. Made me feel awful especially after the taxol failed to make a dent in my cancer. Felt like giving up. Hearing your stories is a real boost and if you guys can do it then so can I. Made it to tesco’s today and got some stocking fillers for the kids, and I am on day 10 of the chemo so that makes sense seeing as I spent day 7 in bed feeling as rough as. Going to have a rest now so I don’t overdo it (one of my weak points in pacing myself). Its tough, four months ago I was doing a triathlon yet I think I expended more energy doing a quick shop today. Good to hear from you guys tho’
I am on my 2nd cycle of xeloda now, just finished this morning, start round 3 next week. So far, touch wood, have not had any side effects. I am always tired, but have a 6 year old and 3 year old, so they keep me busy permanently, and dont have time to rest much. But have felt tired really since first lot of chemo back in Aug 07, and then had herceptin for 2 years, so think all related to that.
I have not had any of the anti sickness drugs, although this week feel like my mouth might be starting to become a bit sensitive. I am also on 4000mg a day, 2000 in morning and 2000 at night. I normally take morning about 8.15 ish, if time before morning school run, and then evening one is about 7.30 when kids gone bed and have dinner.
I am on xeloda for 14 days then week off before my herceptin and then next lot of xeloda.
I hope that things improve for you soon. It is hard when we have the kids to contend with, but think they also help to stop us thinking too much about wot we are suffering.
Hi
I am on my 4th lot of xeloda and I havn’t found the sickness thing too bad. When I first started taking it I had diarhea(sp) after the first week but when I mentioned this to the onc they reduced my dose. I have found that I have been getting more tired as the cycles go on though. I think it is because I feel I can do things and tend to do too much.
the worst side effects I have are the split finger tips which are soo sore. I am typing this with electrical tape stuck to my finger tips. Its the only thing that will stay on for any length of time
the electrical tape stuff just scared living daylights out of me.
i’m so desparate to lead a normal life and there’s no way i can do that tape thing with 2 little boys. i’m putting lots of cream on my hands every day and keeping my nails short, that helped when i had taxol before. i was changing my babies nappies in middle of night with the most painful nails but i did it and he will never know.
i’ve been experimenting - and elizabeth arden 8 hour cream, which i always have in my handbag for my lips - seems to be marvelous for the capacitabine rash on my nose and ching and forehead and any sore hands too - i’m going to order a job lot before you lot get in there too!!!
i went from teenage rash on sat to going out in public (school run) with no make up today -got the spots down!
I am one of those people who have been on it for years. 3 years now and round 53.
I have little symptoms now, as my body has got used to it but I had severe hand and foot syndrome and could not walk and had to have my dose altered to 1650 from 2000 and it is working away. Diahorrea was like clock work on the Saturday after I started my week off, although this also stopped after 18 months. Get the odd bought of tiredness still but again this is a lot less. It messed my nails up completely and open toed shoes is no longer an option!!
Report all your symptoms to the oncologist, as they will alter the dose if necessary.
My mam started on capicitabine (prescribed 2000 mg morning and 2000 mg on a night)on boxing day, although she only took the 1000 mg on a morning and 1000 mg on a night as she was concerned about the side effects, she has had problems with the burning feet and had one night of diahorrea. She rang the hospital and they told her to stop taking them. She is seeing the onc next week, but im worried that because she was taking such a low dose that they wont continue with them and what else can she be offered ? Has anyone else had similar experiences or any advice on side effects?
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