My aunt is about to start this oral chemotherapy next wek as she now has, along with bone secondaries, spread to the stomach.
She is very nervous about starting it…I don’t know anything about this drug as I had FEC.
She has been told she won’t loose her hair though.
Can anyone tell me of their experience with this chemotherapy please.
Should explain my aunt was originaly dx with BC 18yrs ago and developed secondaries after 15yrs…so she does not have a BCN.
Thank You
Karen
Hi Karen
I’m sure you’ll get quite a few replies to your post as there are quite a few of us on Xeloda.
I have been on it for the last 2 years and have been lucky that I haven’t really suffered the hands and feet syndrome that some people get (some can have blistering or just soreness of their feet and hands).
The biggest problem I’ve found is fatigue having been on it so long.
It is one of the ‘easier’ (if you can call it that!) chemos in that you don’t lose your hair, I’ve never had mouth ulcers with this which I did with FEC and I know I’ve also been lucky with my hands and feet as some people do have a bad reaction to it.
You’ve also raised a really important point - my initial diagnosis was nearly 14 years ago (have lived with secondaries for the past 4 years) and the vast majority of us don’t have access to a specialist nurse for secondaries which Breast Cancer Care are highlighting this.
Has your aunt been referred to a Macmillan or Marie Curie nurse? If she hasn’t it might be an idea for her to ask her consultant for a referral.
Good luck.
Hi,
I was on capecitabine for 2 years and it worked well for 20 months, I have done FEC and am now on taxol and for me capecitabine was the easiest I was on 2600 twice a day so it was a high dose. My feet suffered really badly at first but e45 cream rubbed each evening cured this problem, diflam was good for mouth ulcers I used it twice a day each time I brushed my teeth. Anti sickness tablets worked but I did get the poos really badly 2 days after taking last pill. Is your aunt being given byphos for bone cancer? if she is make sure she has a dental check before hand.
Love Debsxxx
Thank you both for your replies.
Yes my aunt is on 3 weekly infusions of byphos.
Her main worry is that she will suffer from diarrhoea as she has lost a dramatic amount of weight in the past months…she is down to 7st 7lb from about 9st+, she is unable to eat very much and as these tablets have to be taken after food is wondering about that too…she is going to bring these matters up with onc., on Tuesday prior to starting treatment.
She has been told in the past that she entitled to have a Macmillan nurse…but won’t go down that route, she also refuses to claim benefits she may be entitled to…I suppose its pride and maybe a kind of …‘’ if I don’t go down that route its not real’’ kind of thing.
Thank you both once again.
Karen
Hi, I think the side effects change in every person, my dad had Xeloda like 7 years ago for stomach c. and he did not had side effects, he did not lose his hair. My mom is having now Taxotere but his doctor wants to change to Xeloda, he says its a good chemo and that its true that people dont lose their hair. If she starts to use it I will share with you her experience with it 
Hi Karen, I’m on 2,300mgs of Xeloda, started treatment this Spring…haven’t had any diarrhoea just dry hands and feet…the dose can always be lowered if your Aunt has any really unpleasant side effects. I feel well on this chemo, my first after years of hormonal treatments.
I also don’t have a Mac nurse…I would see one if I needed to but don’t feel the need at the moment.
Hi Karen,
I’m on 5000 mg a day.Just finished my 3rd cycle and now got a week off.I’ve had occasional nausea(which only lasts a few minutes then passes),slightly tingly hands and feet and I’ve also found that if I eat anything spicy(like curry)I get diarrhea afterwards,which I never did before.
I’ve got mets in lymphs,liver,lung and spine.The Xeloda has shrunk lymphs and breast tumour dramatically.Got CT scan next week to check the rest.
Good luck with your treatment.
Alli.