No, actually come to think of it I wasn’t told either.....I’m much more careful now on taxol, as it’s very different. I think I ate what I liked....but too much chocolate can give you a loose stool...it affects the bowel.
Hello Tatyana. In answer to your questions - I have probably broken every one of those "rules", except the avoiding grapefruit one! I eat soft cheese (not blue, because I can't even stand the smell!), shellfish, smoked salmon, and have recently restarted eating live yoghurt that I make from a packet (Easiyo). I have not suffered from any problems at all. I stick to the no grapefruit rule (even though I like it) because it was the one thing that seems to be stressed for every chemo. I used to think it was because it reduced the effectiveness of the chemo, but have since heard that the opposite is true - it actually enhances the effects, and could, therefore, overdose you a bit. I can honestly say, though, that I don't know how true that is. It could be an urban myth for all I know. Oh, and I also eat licorice!
I think it just really comes down to eating what you are comfortable with. Perhaps eat one of those foods and see how it goes. If you find you are OK with that, eat it when you like, and perhaps add things gradually.
Hugs and good luck. Barton.x
Lozzer, how are you doing now...I did get some nasty vomiting and diarrhoea when I first started on Cape, but had my dose reduced and things were fine. I agree about the antisickness drugs...eg if you don’t need them ,
hopefully you are now now fine without them?
When I was on Cape back in 2013 I had a real fear of nausea, as I had felt so bad with it when I had had FEC in 2008. I asked for anti sickness tablets to help. I could not believe how awful I felt after a few days of starting Cape and assumed it was down to the dose I was on, I was completely spaced out and had no strength whatsoever. It was a chance reading on this forum about a reaction to the anti sickness tablets that made me realise it was them and not capecitabine that was causing me to feel this way. I ‘bravely’ stopped taking the anti sickness tablets and found not only was I not nauseous I also didn’t have any of the other feelings. I was on Cape for about 18 months and didn’t take any further anti sickness tablets and even though I’ve been on other chemos since I make a point of having a different type of anti sickness tablet.
As to the 10-12 hours apart I always felt it was a guideline and you didn’t need to be precise. I think, if I remember correctly, you shouldn’t have the doses less than 8 hours apart but as long as it is over that time I used to vary when I had the doses, particularly at weekends or whilst on holiday as I might eat or get up at a different time. Even with my fairly erratic taking of the doses Cape kept me stable, and liver mets shrinking, for 18 months.
Hope that you get on with this chemo which is very effective but less harsh than other forms of chemo. I found it did take my body a few cycles to get used to the drip, drip nature of the chemo (rather than one huge dose which you get with IV chemo) especially as you are administering it yourself so it almost feels like you are not on chemo. After the first couple of cycles, and a dose reduction, I coped with it very well and went on several holidays and basically carried on as normal a life as I could.
Hello Lozzer. I'm afraid I can't help you with the steroid question as I have only ever had the 3 or 4 days of pills when I had IV chemo in 2011. Perhaps someone else will be along shortly who can help (or perhaps ring the freephone number at the top of the page - which, sorry to say, I have only just noticed after being on the Forum for at least 3 years!).
Re question 2: I have tried to take the pills at 12 hours apart, or as close as possible. I work on the theory that that was what presumably worked best when they did the original trials, and, as they say, if it aint broke, don't fix it. Obviously it isn't possible at all times, but I do try to stick to that. I take mine at (give or take 15 minutes or so) 6am and 6pm. I am lucky that now I have retired, I can go back to bed after the 6am ones!
As for your third question, re anti-sickness pills, I have never taken them while on Cape, and have never felt the need. I wasn't told to take them "just in case", and probably wouldn't have done anyway. I take too many pills as it is - I don't want to take any extra if I don't have to.
Well done on starting your first cycle, and I hope all goes well for you.
Hugs to all. Barton.x
My husband and I once walked from my house near the river in Reading to a friend's house on the Ridgeway above Wantage. It was almost 40 years ago, but even in those days we were quite exhausted when we got there. A lovely walk though.
Have a great time in Greece.
Enjoy the holiday - very envious. It will give you a chance to relax and get ready for the start of Cape and away from hospitals for a while. Oh, and away from the wind and rain ha ha.
Hi Nicky and Janie, thanks so much for the tips and for the warm welcome!
Janie, a Munro -- I'm seriously impressed! We have a few hills around here but they are a bit feeble, being the Berkshire Downs! I love walking and intend to do as much as I can, I can choose from walking around the village on the flat, or tackling a couple of minor hills, or the cheat's option: drive to the top of the downs and then walk on the flat along the Ridgeway!
Saw the chemo nurse yesterday, she didn't seem bothered about swimming (almost as if nobody had ever asked her that question before!) but said I might want to avoid crowded times in the pool (which I do anyway as far as I can) and maybe avoid the middle part of the cycle when my resistance is likely to be lowest, but basically see how it goes, and after a few cycles we'll have a better idea as to how my neutrophils are behaving in practice. At least it wasn't a flat "no," so I felt much better!
So now hubby and I are off on holiday tomorrow for two weeks in Greece, and I start my first cycle of Cape as soon as we get back (after a quick blood test!). Wish me luck!
Hi, especially to the 'newbies'!
Tatanya - ask away, that's what we're here for! I've learnt so much from these discussions over the hears, things that I could teach my oncologist - which is a bit worrying! I'm not sure about the lowpoint in the cycle, as you say the dose is constant whereas with other (IV) chemos there is always a nadir (low point).
Lozzer - I found, when starting Cape, that I had SEs like the big D, during my week off but this settled after a few cycles. A long, long time ago on the forum there was a thread about the week off and quite a few ladies seemed to suffer more on that week than when on the tablets but I think it;s only as the body adjusts to the tablets and also a lot of the SEs can be minimised by a dose reduction which you only really ask about after the first few cycles as you then know how you feel. So be prepared initially and hope it doesnt happen and then learn how your body copes (we are all different). After a few cycles things did settle down with me and I did 'enjoy' (if thats the right word) the week off - especially not having to take all those tablets twice a day.
Phoebe - I used a semi permanent colour, bought in Boots called Nice and Easy, which was absolutely fine for my hair whilst on Cape. I found it lasted way longer than the 24 washes that the packet says so maybe my hair was more absorbent? Otherwise I know there is a range sold in health food shops called Naturtint which is meant to be kind(er) to hair.
Barton - yes we did enjoy Iceland, wonderfully fresh air, crisp days, lots of snow and managed to see the Northern Lights so a job well done ha ha.
Does anyone have any advice about colouring your hair while on cape?
I lost my hair last year on paclitaxel. I started cape in July and and my hair has now come back - white and curly! Its fine and wispy, so i dont want to risk damaging it or causing a scalp problem.
Hello Nicky, hope you enjoyed Iceland! A friend went years ago and loved it!
Hello Lozzer, welcome, but sorry you have had to join us. Hope everything goes well for you. The best advice I can give is to read back through this thread.
Hi Lozzer and Tatyana
I have been on cape since July 2017 now and its doing a fine job of keeping my liver, bone and lung mets stable. I am on 2000 mg a day and i cope with it pretty well. I do tend to find it knocks me a bit for the first few days of the cycle (more fatigue), then I seem to adjust. i do definitely feel i have more energy during my week off. I suffered with very itchy burny feet, particularly at night and found it was worse if I got too warm, so i have a gel cooling mat in bed which works a treat!
I've been lucky not to have any problems with bowels/nausea etc.
I do get the extreme dryness of mouth, eyes, skin. Haven't tried the Udderly smooth, but may well do so after all the recommendations!
As far as infection goes, I don't think the risk is as great with cape as with other types of chemo - just been for a spa break with my wonderful girl friends and swam for the first time in ages! It was lovely. Good idea to check with the team though.
Hope you get on OK
I hope you enjoyed your swim! There's no reason not to swim but if your neutrophils or white blood cell count was very low you would be at risk of infection. I have seen a few posts recently on here saying that some ladies have had low counts but I must admit I'd not heard of it before and I didn't suffer with low counts whilst on Cape. Hopefully you will be fine and can keep up the excercise and doing something that you love.
Welcome to the forum and sorry to hear you are worried about your recent spread. I know exactly how you feel as I had nearly 5 years stable on hormone treatment (for bone mets) and then moved on to capecitabine when liver mets were found. It is scary but I felt, having read many posts on here over the years, that capecitabine was an effective treatment and seemed particularly good with soft tissue mets. I was stable on Cape for about 18 months before moving onto another chemo but coped with it pretty well and didn't have too many side effects. I was on a 20% dose reduction almost from the start and this was still very effective without giving me too many SEs - it is quite usual to have a dose reduction. I hope this helps a bit but feel free to ask me, or any of us, any other questions. I should be around now but have been away and just got back from Iceland so not able to welcome the other ladies who have recently joined us on here (sorry I wasn't able to despite Barton's lovely words to say I would be along soon!!)
Good to hear you are finding the reduced dose easier to manage. Just in terms of numbers, I find it less daunting taking 3 tablets as opposed to 5, seems so much easier somehow.
Enjoy your week off Cape. Hope you have some treats planned. 🙂
Hi Tatyana and welcome although it is not somewhere you would choose to be. However, it is reassuring to know you are not alone. I can only echo what others have said. Cape is a manageable chemo and has been very effective for me; it has shrunk my liver mets. I started off on the full dose which, I have to admit, I did find challenging. I am now on 3000mg a day and feel so much better. SEs for me are dry hands and feet, occasional dodgy stomach and occasional nausea, nothing major.
Regarding holidays, I have been abroad, mainly to Europe. I had a lovely time, just had to be careful regarding what I ate as did not want an attack of bigD😳😳
Currently, I am on my 15th cycle of Cape. I had 8 cycles then had a 7 month break while I had an operation and went on to Tamoxifen. Following progression, I went back to Cape and am now on cycle 7 although I did have a mini break during the Christmas period as I caught this awful flu. A recent scan showed liver mets had shrunk even though I am on a reduced dose. I have to say, it has been the easiest chemo I have taken.
Good luck with everything and keep us posted
OK, Tatyana, re the breathlessness - even though it is a known se of Cape, if you get it, you should still mention it to your Onc. As you know from your previous chemo, it can lower your immune system and it could be an infection. Hopefully not, but it's best to be on the safe side.
Glad I could be of help.
Hello tatyana. Firstly, welcome, but sorry you have had to join us. We all understand how much of a shock it is to get a Secondaries diagnosis, so come here any time for a rant if you need to. There is also another thread you might find useful - on the main Living With Secondary Breast Cancer heading, click in to the heading of the same name (directly under the Treatments And Medical Issues heading). In that area of the Forum is a thread called Bone Mets - Please Join In. Even if you don't have bone mets, we all tend to congregate there for discussions and support.
Secondly, please know that many of us with mets have been around for some time with them. Treatments vary, obviously, but it is possible to live a very reasonable life with mets. Nicky08 is one of our long term Forumites, and is very friendly and helpful (as you will find everyone else to be, I'm sure). She will probably be along shortly to offer you her unfailing support.
OK. You ask about se's of Cape. I have been on Cape for about 3.5 years now. Some times have been worse than others, but Cape is a slightly easier chemo than some of the others. Remember, though, it is still chemo. If you have se's that worry you, you must contact your Onc or chemo unit. We will obviously try to help, but we can only go so far with advice.
The main se of Cape is the hand, foot syndrome (usually shortened to HFS). Everyone will tell you to moisturise as much and as often as possibel. Cape is a very drying chemo, so keep hydrated as much as possible, too - ie drink loads! I have suffered from the big D (diarrhorea) more or less from the start. Others go the opposite way and suffer from constipation. Having had both, on the whole I would rather have the big D. Your chemo unit should give you pilks for that. Also, although I have never had it with Cape, nausea can be a problem for some people. Your chemo unit should give you pills for that, too.
A tip that a lot of people on Cape have learnt, is, if you are really suffering with the se's, it is possible to have a dose reduction. Your Onc will have to agree of course. On an American website, their Oncs seem to start with a low dose and raise it, whereas in the UK, Oncs seem to prefer to do it the other way around - start you on a high dose, and see how you tolerate it.
You don't say how old you are. I am just over 60 now, and have had an se of quite severe breathlessness as an se of Cape, almost since starting on it. They don't seem to list it on the long list you get with the pills, but I Googled it and it is a known se - but mainly for the middleaged to older generation. If you are younger, you should be OK.
Also, during the time that I have been on Cape, I have had several breaks from it. A couple of 3-4 weeks, but one was of several months (during which I did have progression, though). Oncs are known for giving you a break if your fingers or feet get bad. Don't be afraid to ask for a short break if you are really suffering - they can only say no, but tge other option would be a dose reduction. Me and several other people currently on the thread are now on the same dose of 3000mg a day (2 doses of 1500mg). I started on 4000mg per day, but have had 2 dose reductions since then.
OK. Sorry for waffling so much - I hope you got some useful information out of it . The only other thing I can suggest is to read back over tge pages of this thread. I know it is massive, but just dip in and out if you find it too much.
Lastly, good luck and hugs. Barton.x
Sorry to hear your news but welcome to the group.
I am just finishing my 26th round of Cape albeit on a reduced dose after some initial SEs. I've been very lucky and apart from fatigue have not had many issues with it at all. A walk in the park compared with FEC-T which I had in 2013.
Main advice, stick to the 12 hours apart if you can, take with food and brush teeth and swill with alcohol free mouthwash as soon as taken.
I never had problems with hands and feet but Udderly Smooth is highly recommeded.
In the 20 months I've been on Cape I've been to Spain x2, Fuerteventura, Las Vegas and I'm off to Gran Canaria next Thursday so travelling should be OK. I used a specialist insurer, there's a few good ones about.
Good luck and remember if your SEs are bad tell your ONC straight away as dose reductions are fairly common and the main thing is to have a life while taking the tablets as hopefully you will be taking them for a very long time.
Hi Lyndy and George.
Me too, seems to be the dose of choice 🙂
I am permanently knackered but apart from that doing okay on this dose. Scan results next week so fingers crossed