Hi my roller coaster ride has got scary again after 8 sessions of chemo mastectomy in march followed by radiotherapy I have had 4 " normal" months.I had a rash and blister like lump around my scar.I had a CT scan and the say cancer is back spreading into the skin also nodes on good side affected. Saw the oncologist today and he is recommending Capecitabine I was wondering if any of you lovely ladies have been on it.I just want to sit and cry I'm so scared
Hi Geordiegirl47
Sorry to hear this news, but as I'm sure you know there is much they can do for you. I don't have any experience but I wanted to bump this up the list a bit so people can see it and also give you this link to the Macmillan info page for Capecitabine in case you haven't read it yet.
Hopefully someone will come along soon to help but in the meantime, you could try in the Secondary Breast group or searching for it - a couple of threads popped up when I was looking but none of them seemed relevant to you. Maybe search in one of the breast groups or the Chemotherapy group?
Hope you are feeling a bit calmer now - sending some virtual hugs
R
I think there might be one or two ladies in the Triple Negative group having this as belt and braces. Stand to be corrected though, it's late :)
Karen
Hi geordiegirl47,
So sorry to hear your news. I had 5 cycles of capecitabine earlier this year. I had no side effects from this medication but unfortunately for me it didn’t work. Like you my breast cancer turned to skin cancer which was treated last year with carboplatin and paclataxile which I had weekly which was very successful but again it returned this year. Mine is also control not cure so this was not unexpected for me.
My consultant decided to stop the capecitabine due to my blood markers not going down and I also developed fluid on my lung same side as cancer which needed to be drained and last week I had an operation to hopefully stop the buildup of fluid not sure yet if it worked as I now have a pleur x drain which I have attached to a drain three times a week.
I was happy to take the tablets and had they worked would have gladly carried on.
The above is my experience and it is not a normal occurrence according to my consultant. I am now on eribulin two weeks on one week off. Hopefully I will find out next week if this is working for me.
My thoughts are with you.
Carole xXx
Thanks for your replies.I have read the macmillan leaflet but it's always good to hear from real people.it was the thought of feeling as rough as I did on chemo that was worrying me.hopefully it will be easier
Hope you all have a good weekend
Hi Geordiegirl
I've just started my 6th cycle of Capecitabine (2 weeks taking tablets twice a day then 1 week off) I have had a few side effects, which are building slowly - largely fatigue and hand/foot syndrome, but these are manageable. I also take antisickness tablets throughout the cycle, but this is mainly as I am emetophobic so I don't 'do' nausea and sickness if they do occur. I was told that the nausea/vomiting wasn't a major issue on Cape, but diarrhoea can be. I haven't had any of that, which is good.
I previously had FEC-T via IV, and I would say that the Cape is easier, although due to the more prolonged dosage, any side effects CAN last throughout the cycle rather than being mainly during the first week, which was what I found before. However, the lung symptoms I was getting from the lymphangitis almost disappeared after the first cycle and m most recent CT shows a big improvement in that although I still have some fluid on the lungs. I also have multiple bone mets, which are becoming more of an issue, but the lungs were the main problem. So it seems that he Cape and steroids are working for me at present!
I'm lucky as not working at the moment as I've been signed off sick (largely as I work with children, who are buggy little souls and my oncologist doesn't want to risk infection!) - I could work some days, but other days I'm really tired and the fatigue hits me like a wall! I am able to do most other things relatively normally though!
Fingers crossed that the Cape will be kind to you and it does its job!
*runs off to take tablets as suddenly realised I've forgotten!!*
Best wishes
Cathy
Thanks for your reply it's good to hear how people are coping.it's the tiredness I was worried about although I'm retired I hate sitting around like to keep on the go.has it affected your taste buds like fect?I have very dry skin anyway so Iam stocking up on foot creams
Take care
The taste thing is not an issue for me at least - I sometimes get very dry and have a 'woolly' mouth, but I never drink enough and I feel better when I do!
I have found that I CAN fight the tiredness - I am running up and down the country to Devon between appointments as my mother is in hospital after a stroke and we've been clearing her house out whilst she's not there before she comes home! However, I have found that I pay for not listening to my body after a few days and have had a few bad days where I have felt really rough after pushing myself too much!
Cathy
Hi. I’m on capecitabine tablets as well as gemcitabine IV as belt and braces adjuvant chemo for pancreatic cancer after surgery and can honestly say, it’s nowhere near as bad as I imagined. I too, have a vomit phobia so am relieved that this is a low nausea regime and the oncology nurses make sure I have anti-sickness drugs whether I need them or not for my peace of mind. The fatigue can be a nuscience but you learn how to manage it. I have had a bit of hand/foot syndrome which suddenly got bad this weekend but I saw my oncologist yesterday and he is sorting it out. I have been put on B6 plus a short course of steroids and already feel much better. And Udderly Smooth cream with Urea is a godsend! I was told that if I had any issues to ring the specialist nurse straight away rather than soldiering on. I’m a bit guilty of that!
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