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Xeloda / Capecitabine - Your Top Tips, please?

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Re: Xeloda / Capecitabine - Your Top Tips, please?

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.

 

best wishes

 

Moijanxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatyana & Barton

I was never told either when I was chemo back in 2009 and cap to avoid certain foods. I have carried eating the same as what I have always done. Only thing I have not tried eating is grapefruit which I loved.

Linda




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Re: Xeloda / Capecitabine - Your Top Tips, please?

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

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Ladies, hi! Hope you are all doing ok. I have a question about diet while on Cape. I know it's sometimes necessary to adjust your diet to cope with diarrhoea (or the opposite!). But what about in general?
On my first chemo, fec-t, I was told to avoid certain foods: soft cheese, blue cheese, shellfish, cured (uncooked) meats, ie pretty much the same list as for pregnancy. When I asked the nurse if this also applies to Cape, she was very vague. She said that these foods may be slightly more likely to cause tummy bugs, which I understand, but I ended up not being sure whether they are a complete no-no or not. The point being,she didn't even mention it until I asked!

What advice have you been given, and what have you found in practice? And what about other foods that are sometimes mentioned in the chemo context, including live (bio) yogurt, grapefruit, licorice? Any thoughts, anyone?
All the best,
Tatyana
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Re: Xeloda / Capecitabine - Your Top Tips, please?

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?

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Jamieb for your response. Weather here just over the border is a bit windy!
Also thanks to Phoebe4, Nicky08 and Barton for all your comments/help. Decided not to take anti sickness tablet today and see how I get on. 😀
Love that I found this forum as it has really helped chatting to others on this treatment. I do attend a local support group but thankfully most of those lovely ladies are in remission. No one there has metastic cancer.
Thanks for the support and hope you all have a lovely Sunday. Xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

HI Lozzer,
I have had virtually no side effects particularly in the first few days . I get hot sore feet and my fingernails are more sensitive but that usually is in the last 3-4 days of taking the pills
. I was told I should take anti sickness pills ( by the nurse) when I was in Paclitaxel and Eribulin, I forgot to take them I just stopped and one nurse was quite cross with me . When I checked with the onc they said it’s fine, Why take them if you don’t need them ! So I never even took one with Cape and have no nausea. I’m taking enough pills as it is with the 5 Cape and multivitamin s etc.
Hope you have better weather than I do in Scotland x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lozzer

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.

Nicky x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

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

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lozzer
I'm on the same dose as you. I haven't had any problems with nausea fortunately. I try to take the tablets 10-12 hours apart so tend to eat around 7 30pm take tablets around 8pm and then try to be up by 9am. Seems to be working OK? !
Xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Everyone,
As planned I started Cape on Thursday. I am on 500mg x 4 twice a day and anti sickness pills. I must admit only having had hormone therapy up until now I did find the thought of swallowing these large tablets a bit daunting. Scary but got to be done and so far - although early days - am ok. I am wondering however if side effects might be masked by Dexamethasone (steroids) I am on due to mets causing enlarged liver, which totally alleviated that pain.
Couple of more questions!
On paperwork for Cap it says try and take doses 10-12 hours apart. Is it that stringent? Have been taking in evening with meal about 7pm and then at breakfast. Normally if not working I eat breakfast at around 8.30 which falls out of that timescale. I have been getting up earlier 7ish Am sure probably don't need to?
Also been taking anti sickness tablet with both doses as chemo nurse said prevention better than cure. Only says take for five days so not sure if do need to do this or just wait to see if Cap makes me sick?
Thanks to Janie, Barton, Nicky08 and Pheobe4 for your replies and for tips.
Tatyana - have a lovely time in Greece.
Wishing everyone a lovely weekend. Xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatanya

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.

Bon x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

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.

Nicky x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning Tatyana

Enjoy holiday in Greece.

As you say regarding swimming we will just have to see how our treatment goes. I am certainly going to go again. Not ever picked up germs up so far Fingers crossed I don't.

Linda

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Re: Xeloda / Capecitabine - Your Top Tips, please?

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!

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good morning,
Welcome new Capies , I’m only on round 6 so quite new myself. When I start replying I can’t remember who asked questions so it’s a general reply! I dyed my hair with a semi permanent and it’s been fine, I love it although it was a bit bright at first. my hair was coming in rather grey rather than a lovely platinum as it had been on Eribulin.
I have defied my onc for the last 2 years of mets and haven’t taken it easy at all. I was told go for gentle walks But Unfortunately I live halfway up a mountain and the dog did not approve so that went out the window straightaway! And then I climbed a Munro ! (Scottish big hill) I was also told not to swim or eat shellfish both of which I have done. I got a full face mask from decathlon, meant for snorkelling and I can happily swim 30 Lengths with it. You have to ask for pool attendant permission to use it and you look like a weird sort of alien with it but it’s worth it ! I’d post a photo but don’t know how !
If you do get one - getting the right size is important. My feet are peeling disgustingly at the moment but feet weren’t so bad last round. Hot and sore for just the last 2 days of pills as a posed to 5 days on the previous round . I wore flip flops for most of the time and I’m sure that helped . (Not great in a Scottish farmhouse)

Hugs to all Janie xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

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.

Nicky xx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for all replies which are most helpful. x

 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Linda
I'll run it by my Macmilllan nurse first but would like to try as it makes me feel better! Don't want to look as old as my body now feels!!
P x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Afternoon Phoebe

Just thought I would reply to you regarding dyeing your hair. Speaking pesonnely I finished chemo back in April 2009 when hair grew to a reasonable length in the November that year I had a semi permanent colour put on and have did so ever since every 5 weeks. I have been on cap since October. Before that I was on Everolimus combo. I hope that helps. I have also got long hair which would not look very good grey.

Tatyana went swimming today thoroughly enjoyed. Will definitely be going again. I used to swim couple of times a week before going on cap.

Linda


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Re: Xeloda / Capecitabine - Your Top Tips, please?

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.

Phoebe x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

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.

 

Hugs. Barton.x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

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 

Phoebe xx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nicky (or anyone) can I ask what you feel like during week off. Told will be taking tablets for two weeks then have week off. Do you suffer side effects all of the time or does it improve on week off?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for your reply Nicky. X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nicky and Linda, thanks for your kind replies. I totally enjoyed my swim this morning, I'll see what the medical team says and then try to make a sensible judgement about the level of risk. I do hope I can go on swimming as it's good for me physically and mentally.
Does anyone know, with Cape, is there a part of the three week cycle when the infection risk is bigger or smaller, or is it pretty much constant? Or is it one of those things that nobody really knows? (I've got lots of questions in that category!😉
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi tatyana

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.

Nicky x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lozzer

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!!)

Nicky xx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatyana

Funny I was going to ask the same question regarding swimming. I did when I started cap ask a chemo nurse also asked oncologist. Answer from both was best avoid as could catch infection. When I was on Everolimus I went swimming as normal did not ask them about it. But I must have been at risk becaise in side effects it says you can be more prone to get one. Wish I had not asked. Thinking about it I suppose if either one said yes you can do and we came down with an infection we probably blame them.

Once weather improves I am definitely going to give it a try swimming. Hate not excercising. Oncologist did say I could attend a gym instead.

Hope you did go swimming and enjoyed it.

Linda

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Re: Xeloda / Capecitabine - Your Top Tips, please?

I am also due to start Capetecitabine on Thursday. I have never had chemo before only hormone therapy. Have bone mets which have been stable until recent scan showed up three mets in my liver. This past week I have suffered with severe pain from liver which is now helped by Dexamethasone. I have managed to lead a normal routine since being diagnosed in 2014 so have been lucky. Now things are progressing I feel scared. I know everyone reacts differently on treatments but wonder if will still be able to work. Any advice on what to expect would be gratefully received.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone, a quick question: can you swim while on Cape?
I know I have to take the advice of my medical team on this, I've an info session with the chemo nurse tomorrow and I'll ask her, but I gather that the advice can vary and it would be great to hear your experience.
I used to swim regularly and it's a great form of exercise and relaxation. Had to give up during IV chemo because I had a picc line, then surgery. Today is my first time back at the pool, I'm literally about to get in the water. I'd be sad if this turned out to be the last time instead of the first.

All the best,
T.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatyana

I don't blame you for going on holiday before you start Cape. I did the same and, like you, I was worried about delaying starting treatment. However, we had booked a break to Galway and Lake Garda and I so wanted to enjoy my holidays. My onc was fine with the delay which was 3 weeks. I can only speak for myself, others might have different views, but the holidays did me the world of good. I just think we gave to do what feels right for us at the time.
Anyway, have a lovely holiday, hope you are going somewhere nice away from the British cold weather. ❄❄
Have a good weekend all😊😁

George x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George,
Thanks for your warm welcome, everyone here seems very friendly and upbeat. Of course I'd rather not be in this predicament, but it's good to know there are other people out there, even though I wouldn't wish it on anyone! I am feeling a bit better having read through some of the experiences and wisdom here.
I have a meeting with the chemo nurse Tues, for a pre chemo assessment and to pick her brains and figure out a plan. I'm hoping to scoot off immediately after that for a long overdue twoweek holiday before starting the tablets, my oncologist is happy with this delay. In one way I feel I just want to get started immediately to zap the Alien, as I call it, but I don't know how I'm going to feel when I start or whether I'd be able to manage two weeks away while on treatment, so we've decided to go for it now if we can.
Which I guess should be my motto in life from now on!
Have a good weekend everyone,
Tatyana
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lyndy

 

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. 🙂

 

George X 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

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 

 

George 

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George

Thank you for your reply regarding eyelashes etc. I do hope they return as face seems bare without the eyebrows and eyelashes. Now on week off tablets go back to chemo unit next Thursday hopefully neutrifils and kidney function has improved. Do feel more like my normal self on reduced dose.

Hope you are doing OK. Have a good weekend.

Linda

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you Barton, that is very sensible advice.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

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.

 

Hugs. Barton.x

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton,
Thanks very much, this is exactly the kind of info and encouragement that I need. I'm 63, so I'll watch out for the se's that you describe. I am beginning to get my brain around it, I know it will take time to process, but I do find these forums so helpful and you meet such lovely people!
I'll check out the bone Mets thread too, thanks for the tip!
Tatyana
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Paula, you've made me feel SO much better, bless you! I wish I'd bought shares in udderly cream, I found it a big help on docetaxel and have carried on using it as a general hand and foot cream! I'm inspired and encouraged by your travel experiences. Go girl!
Best wishes,
Tatyana
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Re: Xeloda / Capecitabine - Your Top Tips, please?

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 Smiley LOL. 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

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatyana

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.

Regards

Paula

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello people,
I'm about to start capecitabine so I've wandered over here from the May and July chemo threads. I have triple negative inflammatory BC, had fec t and Mx but my latest scan shows Mets in mediastinal nodes, so yesterday I made the transition from curable to treatable but not curable. I'm a bit shellshocked. It'll take a while to absorb all the info on this very long thread, I wonder if someone could just answer a few basic questions?

I know SEs always vary, but how does cape compare with fec t? What are the most likely SEs and what to do about them? And how much of a normal life can you lead? Do people manage to travel,in UK and/or abroad?
Please, just tell me what you think the main things are that I need to know, while I try to adjust to the idea of going back to chemo and possibly staying on it long-term. Thanks in advance for all your insights!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lyndy

Can understand hospitals not doing TMs because they can be unreliable but doesn't seem fair they don't do them because of cost. However, regular scans are effective in showing what is going on and more reliable.
My eyelashes and eye brows have been fine on this treatment. Perhaps, yours will grow back on the reduced dose.
Have a good week

George ☺
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning George

Regarding tumours markers I used to get them done all the time back in 2009 whilst on chemo. Kept getting them done for the next 5 years but for some reason now chemo unit when taking blood keep saying they are expensive to do so like to do them all time. Mine like yours was a good indication if treatment was working. For a long time my CA153 level was 15. Gradually they have gone up to over 200 when last checked in September.

Can I ask have you lost your eyebrows and eyelashes on this treatment. I am normally quite a hairy person. Leg hairs have stopped growing all together. All of my body hair seems to be disappearing. Last time that happened was when I was on Taxetere. Think treatment must be to strong for me.

It is nice when you are on a week off tablets.

Linda

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Kirky

Yes, I know that knackered feeling. The winter months don't help much either- I just want to hibernate 🙄
Good luck with your scan results. Will be thinking of you

George x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lyndy

Yes, I always get a copy of letter onc sends to GP. It doesn't usually say a great deal to be honest. Regarding tumour markers, my understanding, and I am certainly no expert, is that they can give an indication of how active, or otherwise, your cancer is. Oncologists tend to look at trends rather than numbers, mine does anyway. However, a lot of hospitals don't use them as they can be unreliable. I know my onc does not use them with all his patients; he does request mine as they have been consistent in showing when treatment has become less effective. I sometimes wish he didn't use them as it can be very stressful waiting to see if they have gone down or up every 3 weeks. I think, for many patients, scans are a better way of showing stability,etc.
Hope SEs continue to be mild for you on the lower dose. I am just starting my week off as had to interrupt cycle 6 due to flu which meant I had a 5 day break mid cycle.
Have a good week

George x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Evening Kirky

Good luck with your scan results next week.

Linda

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Evening George

That's great news. You mention tumour markers can I ask what they are. Forgot to ask yesterday what mine are. Keep meaning to ask for copy of letters that go to GP from oncologist. Do you get a copy of any letters sent to GP?

Linda

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Re: Xeloda / Capecitabine - Your Top Tips, please?

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