Hi, I hope you don’t mind me posting - I often read the forum but have only posted once or twice before. I was diagnosed in Jan09 and had mastectomy, FECD and radiotherapy which all finished last September. Just getting life back on track when found a small lump a few weeks ago which has turned out to be a recurrence - no CT scan results yet so hopefully it will be local only…
Had a good chat to oncologist this afternoon and he is recommending Capecitabine monotherapy to treat the recurrence. He is going to leave out docetaxol as I had an awful time with it before and am on my own with a 3 yr old so need to be able to keep going for him (useless husband walked out during last round of treatment).
Anyway, my question is - is it possible to live any kind of a normal life on capecitabine? My son has just started nursery school and settled with a new childminder who he loves and I want to disrupt his live as little as possible for now. Has anyone been able to keep working or are you just too tired? Any comments would be appreciated as this has come out of the blue today…
Hi Wee Vee, I have been on Capecitabine but not for local recurrence. I was on it for most of last year but I have bone mets. It really worked for me but not sure about local recurrence info. If I can help just let me know. Love Val
Thanks for the reply Val. How did you feel on the capecitabine? Was it similar to previous chemo or was it any easier? I find that after a few hours I am now thinking because it is a tablet it will be fine but realise that this is completely unrealistic!!
Hi Val, I had a different form of chemo years ago which was pretty hard to deal with, lost my hair, extremely sick, thin as a rake. But this chemo was much more do-able and I didn’t loose my hair although it did get a lot thinner but there again I do have very fine hair. I wasn’t sick on it either but was quite nauseous at times. You need to take the tablets 12 hours apart and you have to eat something when you take them. Even if it is just wheetabix, or porridge or banana on toast. You are not being unrealistic at all. Some ladies on the site remain on the tablets ALL the time and have been for a few years but everyone’s cancer is different so you will need to see what your Oncologist decides is for you. The amount you take also depends on your weight I believe and it can be reduced if you are finding it hard. I had it reduced because I had what is commonly called foot and hand syndrome but this does not affect everyone. So if you have problems with your feet and hands get back to me as I have plenty of hints to help. Take care and let me know how it goes. Take care Val…love Val !
Thanks Val, that’s really helpful. Had the hand/feet problems last time on taxotere so know all about it - vit B6 worked for me. Feel a bit calmer this morning, nothing to do but carry on!! Val
Hi Val, Im sat capecitabine in hand just about to start my first cycle so would be grateful if you could expand on the B6 comment, was it cream form or tablet?
Best of luck to everyone starting chemo’s this week too
i was on capcitabane for a year till june this year and worked 4 days a week throughout …had bad spell 6 months in but had dose reduced to 3000mg (from 4000mg) for couple of cycles to get my feet healed as they got very sore but then back up to 3600mg for rest of the cycle and that was fine for me. But some people dont tolerate it as well, its luck of the draw am afraid. But it is easier i think than iv chemos…with less nasty side effects
good luck with it
(i used boots aqueaous cream for hands and feet - free on prescription just ask for it at your doctors) helped amazingly.
xx
ps. B6 is tablet form - pyrodoxine - get it from your ncologist/gp :-
)
pps. capcitabane worked well for me shrank my biggest tumour of 3.5cm to 1.6cm and got rid of lots of nodules in my liver and lungs to enable me then to have the remainder zapped by RFA
wow thanks for reply Zippy, you really did have an excellent response. Mine is for secondary in spine and also a few stray bits in lympths in sternum and other breast to mx. Having along with Navelbine/vinorlbine.
Its good to hear success stories, its encourages us no end
Ann- I think when I had vit B6 before it was at quite a high dose (150mg per day from memory) so was prescribed by the oncologist. May be worth asking about if you start to get problems.
Another hint to avoid sore hands and feet while on this chemo.
When I first had Capacitabine I rubbed cream vigorously on my hands and feet. Found out this was the worst thing I could do…Do put plenty of cream on and then put cotton socks on your feet to help absorb. Stimulating the feet causes the blood vessels to burst and this causes the discomfort. Also keep your feet COOL. I wore those boot like slippers and would have been better in bare feet! I took the Piroxodine vitamin B^ but my Consultant said that there was no proof that this helped in any way. My feet were so PAINFUL that I decided to give it a go anyway…anything to help as at its worst it was like walking on glass. The second course I did the right thing…read up on it…did what I have mentioned at beginning here and it was much better AND my Consultant reduced the dose this time. Good luck. Val
Well, went to see oncologist yesterday and they have decided that capecitabine is not enough and I will now have to have Paclitaxel. They are going to give it weekly for 12 weeks to try and minimise the s/e so not sure how that will go. I hated every minute of the taxotere last time so would have done anything else but go on a similar drug - dreading Tuesday week when it starts…
Hi Val, sorry I dont know anything about the other chemo but hope you manage to cope with it and that someone will come along here soon anf let you know their experiences
I can’t help either Val but they must think it is a better drug for you and everyone’s treatment is different. Hope it does the trick for you without any unpleasant side effects. Love Val
