Hi Alison we posted at the same time. I have stopped Cappacitabine twice before. The first time I managed without it for 18 months…then my tumour markers got higher and higher…so she started me on them again. That time I was on it for about 9 months and the markers went down each time. I know I will have to go back on it again…but having a break re-charges my batteries and gives me a break from it all for a while. You are not alone. I know some ladies have been on it for years without a break… but we are all different and it works differently for all of us. Hope this helps, love Val
Thanks Val, I appreciate your input. My liver function was normal at my last scan (I’ve bone and liver mets) so I’m taking a break and will be having hormone therapy - I think Zometa or is it Zoladex. I’m a terrible patient - I never remember a thing after I leave and nor does my sister who comes with me!
x
Val
You’re freaking me out with the tooth stuff!!
I had my wisdom tooth out last Thursday & was given a massive dose of antib’s for 5 days & I’m due to start cabecitabine on Friday. My Onc said that it was important to have the tooth out prior to starting treatment & that the girls wouldn’t give me chemo unless I’d had antib’s?
I’m desperate to get chemo started now…I’m in so much pain that I feel my body is screaming out for help! I’m just praying that it works for me as well as it has for most of you.
Hxx
Hazel My sincere apologies…and to everyone else too. I have got it all wrong…so so sorry…It is the BIPHOSPHONATES that cause this problems with tooth extraction. NOT THE CAPPACITABINE. Can someone at BCC please delete my last posts incase I cause anyone else to worry. Please forgive me getting confused…Love Val XXX
Dear scottishlass,
I have deleted your post as requested.
Very best wishes
Janet
BCC Facilitator
Thankd Janet, I have phoned Hazel on her mobile to apologise. Luckily she knows me well…will think before I write in future. Thank you
Aw Val…don’t worry about it!
We’re all entitled to little episodes of chemo brain every once in a while!
Love
Hxxx
Hi Tawny
I am only on my first cycle of Cap/Lab but I too have a really itchy head which is driving me nuts. Also, after a lifetime of clear skin, I have come out in spots and whiteheads all over my nose, chin and between my eyebrows, this too itches like crazy.
I have also had mouth ulcers which were quickly zapped with ‘Iglu’. I have also had diarrhoea, mild nausea, and a couple of days of tiredness. I wonder if I will experience this every cycle or whether it is just because it’s the first cycle?
I keep studying my skin mets, hoping to see signs of improvement, but none so far, I guess it’s a bit too soon to expect anything yet.
Linda
Dear Linda, sorry that you are suffering from some side effects. I have just been having Capecitabine on its own and shouldn’t complain really as apart from the itchy head and spotty skin (like you, I always have had a good complexion) I haven’t had any other side effects. I’ve tried massaging my head with some almond oil and some rosemary essential oil and I’ve also bought some organic shampoo and conditioner for sensitive scalps to see if that has any effect. To avoid the itchy feeling I need to wash my hair every day.
Anyway, thanks for replying and wishing you well.
Alison x
About itchy scalp and skin problem…ask your GP to give you NIZORAL 2% shampoo. I tried my husbands one ( he had a problem skin which was red and itchy after showering) and the shampoo worked for me. Good luck. I too only had Capecitabine not the combination one but had bowel problems throughout. But I did already suffer from IBS and it just made the symptoms worse. Now that I am off it things have returned to normal. Good luck girls. The symptoms can be irritating but if it is doing its job I feel it is certainly worth it. Take care. Love Val
Hi Linda and Alison
re the spotty skin,
I know that mine is unrelated, but when I started taking Aromasin last Autumn I broke out in red skin and little yellow dot like spots, mainly all over my nose. My GP didn’t think it was related but prescribed oxytetracycline and it cleared up! As soon as I stop taking it the spots reappear within a week! and I have been on them constantly now since Christmas, on a half dose and it seems to be keeping the spots at bay, as the spots really upset me.
I realise that you may not want to be introducing any more medication unecessarily but in my case I found this medication to really work.
Alternatively if you don’t like the idea of further meds, Boots N0.7 do a fantastic concealer (in a lipstick like gold tube) (believe me I tried most cosmetics in a vain attempt to cover mine!) and it really does hide spotty areas, I have sometimes spread it all over like a foundation.
Regards Nicky xx
Nicky and Val, thanks for the suggestions. Head not so bad today but will bear other remedies in mind.
Alison x
Ooooh…I finally start capecitabine tomorrow! Can’t believe I’m excited about going back to chemo, but I just feel that my body’s screaming out for help!
Please remind me of this excitement when I’m back in a few weeks moaning about the SE’s! LOL
Thanks again to everyone who’s posted on this thread…it’s made the prospect of chemo for life a little less scary!
Hxx
Good luck with the Capctabine. I’ve been on it full time since Feb 09 and managed not too badly.
Tiredness is a big issue so take it easy. Also found that my tummy would sometimes be upset and I get doses of the runs!(Nice)
Overall very doable - my hair is ok and strangely after years of bad skin my skin is now clear- I put it down to the fact that nothing could survive chemo!!
Good luck
Muddy
Good luck, Hayz! Apart from my itchy scalp and spotty forehead (and that’s been very recent), I haven’t suffered any side effects from the chemo. Most people think I look quite well and I’ve slept like a baby. So you could be one of those lucky few who sail through treatment.
Wishing you all the best.
Alison x
Starting my cap this morning…EEK!
2000mgs now & 2000mgs in 12 hours…s’pose I’m starting on the mega dose to see how I cope…given that I’m going away with the BCC Girls next week I hope I have no probs!
I hope I don’t offend or upset anyone with this, but I think you guys are the best people to ask anything…
Do you have to use condoms when you’re on this chemo?? No one said anything to me yesterday, but it says it’s advisable in the literature…advisable seems like a bit of a grey statement to me…I like when you get a straight do or don’t otherwise it just sounds like it’s an option!
Love
Hx
Hi Hayz, I’m on the same dose, I’ve been on this dose for 2 years now. You should find (for the majority of us) it takes a while for any side effects to kick in. This is my first chemo and after nearly five years of hormonal treatments with injections to halt my periods the injections were stopped as no-one, including me, thought my periods would return…ha…but they did. 
At first every 4 weeks but now they are less frequent. As the return of my periods have not caused my markers to rise I haven’t resumed the injections…thought it would be less for the body to have to process. So yes I wouldn’t throw all caution to the wind ;-)…have a lovely time away…x
oh also for other Capecitabeenies…yes me too, I’ve started to get white heads…the Boots No 7 concealer Nicky has mentioned is good!..the spots don’t itch but appear on the jawline and hairline…they are not too bad, I can hide them.
Hope this chemo is working well for everyone…x
Hayz - in answer to your condom question - YES (use them)! For your husband’s sake as well - mine had a nasty surprise 
Though he’s fine now.
I am also on 2000mg twice a day - i thought they based this on my weight/height (more than diagnosis?)
I’m halfway through cycle 2 - thanks to everyone for the tips on this thread and it’s great to hear the positive stories too. Best wishes to all x
Hi scaryfox, yes you’re right the dose is based on your weight/height. It can also be lowered if you have any really troublesome side effects.
x