Hi, I wonder if anyone can give me some advice. I’m on my second cycle of capecitabine & lipatinib and just struggling with 2 side effects. The first is utter tiredness and lethargy and the other is terrible stomach cramps and violent bowel motions about an hour after I’ve taken the medication. I find it’s worse if I’ve had something sugary and unsubstantial. In the morning I try to take my tablets with a hearty bowl of porridge, which is better, but later in the evenings, I just don’t fancy something like that and find it difficult to eat anything… naughty me I’m rather partial to a biscuit in the evening. Any suggestions of anything else I can try?
I have small children, so being tired is something I’m used to, but I just wondered if anyone else on capecitabine has experienced and overcome something similar.
Thank you! x
Yes Annie81, I have been on Capacitabine but not lipatnib. I felt I had to force myself to eat something and it was an effort to think of something I could actually eat. Banana on toast, cereal like Special K. I really felt I had to force myself to eat something when taking the evening pills. I was very tired too and went off to bed for a couple of hours in the afternoon or around teatime…but that sort of interfered with my reall time in bed. As you have have small children to deal with too it must be very difficult. I had the stomaqch cramps too and the same violent bowel movements. I had imodium to help with that. I always had porridge in the morning ir wheetabis but when I came off the treatment after 8 months I couldn’t face either or any cereal for quite some time. How are your hands and feet? I have some toips for that if you are having problems there. Hope the treatment does the trick. Each time I started Capacitabine my tumour markers went down which encouraged me to keep going. It can be hard. How long have you been on it and do you know if you will be on it for a certain length of time? Love V
Thanks so much for this. Its so nice to know that I’m not going bonkers and these are ligitimate side effects. Could you tell me more about the tumor markers? What is the name of the blood test and what do they test for? It would be interesting to see if mine are at all elevated seen as my mets spread is very very tiny.
xxx
I only found out about “tumour markers” when I was being diagnosed with mets. They weren’t sure at the time what was wrong with me at first as I had a bowel probelms.
I think you would be best to speak to your GP or Breast Care nurse about your tumour markers. I have raised CEA and CA125 markers but am not sure they check them out with everyone it was just that they were looking for what was wrong with me 11 years ago!
But the first time I had Capacitabine my tumour markers halfed…which made me want to go on with the treatment and it helped me mentally if you know what I mean. Now that I am off chemo for the moment my markers are on the rise again but my Oncologist insists that she cannot go by that alone and has to take my general well-being as well. I feel really good at the moment. But my appitite is still not great…I never feel ravenous. Take today for example I am not hungry but made prawn omlettes for dad and my husband. I had some too but before I ate it I just wasn’t hungry…but I ate the lot. I am not thin by any means…a size 14/16 and am not intending to loose weight but my trousers fit round my timmy again…but think it is more running after my Dad who is living with us after having a TIA, visiting Mum in the Nursing home…and My hubby is in crutches as he has ruptured his Achillies Tendon…but I fell really good but a bit tired and trying to make them do more now. Keep in touch anytime. Love Val
Wow Val, you have so much on! I hope you’re ok. At least you have this web site to bounce off. I hope your Dad recovers well and your Hubby is back on his feet again soon.
I really know what you mean about the never feeling hungrey part! I’m exactly the same, I find hardley anything appetising, but find myself nearly always clearing my plate. I’m having my recurrance (on my mx scar) and my mets (on my spine) treated locally by surgery to chest wall and spine radiotherapy. I’ve been told I MAY not have to go back on the Capecitabine after this - which I would love, but I don’t want to be unsafe or a risk. I guess regular tumor marker tests could be a good reassurance for me.
Thank you so much for all your help and support.
xxxxxx
Hi annie
hope you are well + don’t mind me gatecrashing- was just after some advice on the capcetabine. hope you are coping well with it + it is effective for you.I have just been diagnosed with local recurrence- skin mets just weeks after finishing chemo for primary 
I’ve just had a big op to remove all the affected skin + muscle as well as removing my recon. I see my surgeon tomorrow who should tell me my treatment plan- I’m expecting more chemo as well as rads. Capcetabine has been mentioned by my bcn as a likely chemo so was wondering how the side effects are?? I originally had fec+ tax which I coped with quite well. Due to going onto half pay, I’m considering going back to work at some point during chemo- is this possible do you think or am I kidding myself?!? Loss of appetite would be a good thing in my case as I need to lose a few stone! Also, how long is the course of capcetabine typically? We have a big holiday to Canada booked for Xmas + tge new year + I’m determined to go one way or the other!! Last question(!) have you lost your hair on this? Mines just in a short crop, lashes+ brows back etc so I’m gutted at tge thought of losing it all again…
Hope you are managing ok- it’s not easy with young children is it? Was your primary diagnosis recent? It’s nt fair is it we should just be enjoying our families at our age
take care
tina xx
Hi Tina, I have been on Capecitabine on two different courses. I know some ladies with secondaries who remain on it all the time. I have bone mets and after course one which lasted approx 6 cycles I remained off the chemo for 18 months…then went back on it again for another 6 cycles. I stopped just before Xmas 2009 and have remained off it so far. I didn’t loose my hair on this chemo but I have very fine hair and it did thin a bit( but no bare patches). The dosage also depends on your weight…I think… I have been on other chemo regimes in the past and this one was the most do-able. I wasn’t ever sick but felt a bit nauseous at times. You need to eat when taking the tablets which you take 12 hours apart. I could tell you more but that will probably be enough to take in! But everyone is different and I don’t have skin mets. I am sure you will do well on it and come back if you need to ask any more questions. Val
Hi Tina! Welcome. I got my recurrance and spread just 8 months after my mx. So happy I didn’t have an immediate reconstruction, I can’t imagine how you feel. I hope you’re taking everything on board ok. I had 4 FEC and 1 Tax, but then my breast lump grew really quickley, so I had surgery. Then I had full irradiation, chest wall + boost, then I was treated with 11 out of a planned 18 cycles of herceptin and STILL progressed. Starting another treatment was devastating for me at first, I just thought - what’s the point? It won’t work. But I feel so different now and feel so positive. My recurrance and spread has been caught so, so early and I am working 3 days a week perfectly fine on Capecitabine and I couldn’t work at all on FEC. I’m even considering taking up some new exercise. I find its all down to diet and attitude. I get my CT results on thursday, fingers crossed. I’m sure I’m not so unlucky as to have more bad news.
Val, hope you’re doing OK and remain the shining light for your family!
Annie xxx
Hi ladies
thannks for theinfo + welcomes :-). Hope you are both feeling well today.
Val- thanks for all the info on capcetabine. I’m hoping I won’t have more chemo but I’ll no more in a fortnight after seeing my onc. The initial feedback from my surgeon today is that only rads are planned as they feel this is a local prob. But I have an MRI scan on Friday to further investigate an anomalie on my liver which was picked up on a ct scan last month. I’m sure that if they think the 6mm lesion is suspicious, then they will go with chemo. I’m keepin everything crossed for some good news though- surely I deserve it… I’ll keep u posted x
annie- best of luck with your scan results. Such an anxious time I know. Waiting for my scan results last month was torture- I was convinced the skin mets was evidence of widespread mets. Was your tumour hormone negative then? (You mentioned herceptin but no hormone trearments). How old are your little ones? My son is 16mths and I’m determined to stick around for him! X
sounds like capcetabine is do-able and I could go bak2 work if need be then…
My appt went well-ish. Surgeon + bcn seemed really positive despite there being traces of cancer in my chest wall (surgeon removed a small ‘fillet’ that looked suspect). However margins were clear + they keep insisting it’s a local recurrence+ rads will be very effective. Feel a bit deflated but just gota try + be positive + trust their expertise…
Annie let us know how tomorrows appt goes I’ll be thinking of you
love tina xx
Results were good - no progression. Yey! At last!
I was hormone negative, which at first I was really happy about - not having to take tamoxifen. But now I guess it would have given me another treatment option. Never the less, the capecitabin seems to be working for me. Thanks ladies!
Annie xxxx
That’s brilliant news Annie you must be so relieved!! Thanks for letting us know 
you are right in saying that being hormone negative reduces our treatment options- think it’s about time they had a drug breakthru for us hormone neg ladies…
I had an MRI of my liver done on Friday so I’m hoping to get some results this week. don’t think I could cope with bad news so hoping + praying it’s not mets. I’ll keep u posted.'take care
tina xx