Could anyone advise me on the kind of side effects to expect with capecitabine (tablets)? Have been on it for 6 days (and on Zoladex and about to be on herceptin again). I know what the bits of paper say, but wondered about real experiences. Won’t bore with details or the depths of my depression, but got rediagnosed just bfore xmas (eventually) after finding a small lump in neck. (It’s either localised recurrence, regional recurrence or secondary …depending on which professional I speak to.) I’m posting everywhere at the moment…will calm down soon!!! But…it helps sp much …
Do you feel worse the longer you take it? How did your hair cope? (Want to cut it off and colour it, as feel about 20 years older than I should!!) Did you go on holiday while on it and are there better times to go in the cycle (i’m 2 weeks on, 1 week off).
I had 6 cycles of Capecitabine earlier last year and didn’t seem to suffer with any adverse side effects. I did find that I needed to have a proper breakfast (i.e. toast and not just a smoothie) to settle my stomach before taking my first batch of tablets. Hair was fine. Apparently sometimes it can thin a little, but it won’t fall out like it does with intravenous chemo. The most common side effect is cracking or peeling of skin on hands and feet. Keep both well moisturised. If you do have a problem, contact your hospital straight away as there is a tablet they can give you to reduce the symptoms (I think it’s B6). I went on holiday (abroad) during treatment and was absolutely fine. I didn’t find that I felt any different on my week off (I had my hols during the ‘on’ time) though it is a relief to have a break from swallowing the pills!
I hope you find you tolerate it well. To be honest, I never felt like I was on chemo - probably psychological, as I hate needles! I wish you well with your treatment, please PM me if you have any further questions.
Alison covered most of the info you need to know about life with capecitabine – I’ve been on it for more than seven years, probably longer than anyone else in the UK. Most of us find it much easier than IV chemo, and some of us really don’t get many side effects. Usually, side effects are in direct relation to how high a dose you have, but some of us don’t follow that rule either! I do hope it proves as successful for you (and everyone else taking it right now) as it has for me.
I have had three cycles of Capecitabine 1800mg twice a day for 14 days plus VInorelbine on day 1 and day 8 and been fine until the last couple of weeks when my feet have started blistering and become quite painful. I have been moisturising nightly.
Anyway, today when I should have started my fourth cycle I am having an extra week off because one of my toes has become infected following the blister on it bursting. I am disappointed as my scan last week has shown that this drug combo is working very well for me AND apart from my feet I have felt quite well on it. AND my bloods were fine!
I am hoping that I will be able to benefit from Capecitabine for a long time like Queen Marilyn. Is my problem likely to be because of the high dose I am on? When you stay on it for a long time Marilyn what sort/size of dose do you have? Is it a lower maintenance type of dose?
I was diagnosed with lung secondarys on Christmas Eve and I am now on day six of capecitabine. So I am probably not in any position to advise you. My big issue is hunger I need lots of food in the mornings otherwise I feel dreadful. This is a big issue for me because I have been in a diet for most of my adult life and every time I have chemo it makes me hungry!
What dose are you ladies taking, I have four 500mg plus one 150mg tablet twice a day which seems like a huge amount but I have nothing to compare with. I am led to believe that your chemotherapy is calculated on your surface area, in which case having the figure of a baby elephant would explain my heavy dose.
Does anyone experience tiredness? Or am I just weakening because I am trying to keep my diet of yogurt and berries with a small evening meal?
Thanks to everyone for their posting here. I’m not on capecitabine yet but its looking likely - I’m just finishing carboplatin/gemcitablne and my onc seems quite keen to go on to Xeloda next. I hope it works well for you all (and me too if that is the route I go!)
Yes, I’ve been on a “low-ish” dose of capecitabine for many years – I started (in October 2003) on 2000mg x twice a day, two weeks on and one week off, then had a couple of dose reductions because of side effects (digestive, fatigue, hand/foot syndrome), landing on 1000mg x twice a day, two weeks on and one week off about five years ago. This has suited me fairly well, maintaining relative stability in my liver & bone mets without making me feel too disgusting – my hands & feet do get a bit weird & sore, but I also have neuropathy from diabetes, so it’s difficult to point to capecitabine as the main suspect.
However, all of this good news comes with a bit of a “health warning” – a couple of months ago, a CT scan showed some possible progression in my liver; will have a follow up scan next month to see how it all looks. Might need to come off capecitabine and go onto “industrial-strength” IV chemo if results definitely show progression – not looking forward to that, after many years of “easy chemo”. But this is what happens to us when we have secondary BC – it’s such an unpredictable disease in terms of timing and changes.
Again, good luck to everyone on capecitabine – hope you all get at least 7 years of good news!
Hi all. I’ve been on a constant high dose of capecitabine, 2,000 mgs, twice a day since 2008. (2 weeks chemo, 1 week off cycles) I feel very well on this chemo, my hair is still very thick and I have very little tiredness. I do get painful heel cracks sometimes but, thanks to Marilyn, I have now discovered Flexitol heel balm and things are improving after only a few days. The rest of the time I use the Udderly Smooth cream lots of us on this chemo seem to use.
I have had long periods of no detectable cancer activity on this chemo. I do now have a recent small amount of progression but it’s stable and hopefully I still have a little longer with the peachy pills.
Good Luck and Best Wishes…xx
Thanks for all the info. Do the symptoms develop more over time? I’m trying to decide whether to keep working or not. Last time I had chemo (primary bc). I gave up on the world (left jobs) and got quite depressed. I now have 2 jobs, one very new. I go back to that one in Feb and need to tell them soon whether I want to go on sick leave. I like being part of the world, but am conscious that tiredness will kick in and perhaps increased nausea and tummy probs, as well as well as the hands and feet. Will invest in some extra creams - are they available from normal chemists?
I’m on 4000 mgs a day (4 500mg tablets twice) in total. Not sure if that is high or low?
So sorry to hear about some of your progressions. I hope the teatments halt them! There is no peace with this disease.
Belinda - I have followed your posts for years. You are always so generous in sharing your experiences.
My husband still has his man flu - can I shoot him?
Hi again Gail, thank you for the kind words. You may, hope so, not have much tum trouble. We are on the same dose and apart from the odd Immodium moment I’ve had no real trouble at all and I’ve never had any nausea. I’ve found having a meal rather than perhaps a snack with the tablets helps my tum. I would think the Flexitol I mentioned in my post is available at Boots and others but I ordered mine from Amazon. Udderly I order from a cycling site, wiggle.co.uk it’s used a lot by sporty people for friction burns.
With tiredness I’ve found I can have a number of full days, early starts, late nights and then day 5 or 6 I suddenly hit the wall and crash out for a day.
My family have had the flu buggy thing and it’s still hanging around.
Amazingly, well at the time of typing this, I’ve been ok.
I hope you and everyone here on this thread find the tablets trouble free and effective…xx
PS…for anyone else who, like me, have had painful heel problems, I really recommend the Flexitol! Brilliant stuff.
We’re all so different in the way our cancer and treatments affect us, so it’s difficult to say how you’ll be feeling while you’re on capecitabine. Like Belinda, I hope it treats you kindly.
I continued to work for four years after my liver & bone mets dx, managing elements of a large regeneration programme in the town I live in. My managers and colleagues were great, ensuring plenty of flexibility in how/when I worked for the partnership, but I know that was a fairly unusual situation – most of us struggling with mets and the effects of our treatments just don’t have such a supportive time at work, and I know many who stopped work as soon as they could after their mets dx. At the end of my seven-year contract, I took early retirement (I was 57 then), and that has worked out well for me, although I wasn’t happy to give up working so soon.
Deciding whether to stay on at work is a very individual choice – you’ll really need to see how you feel, and maybe talk it over (now and at suitable intervals) with someone who understands both your situation and the type of work you do: An occupational health unit? MacMillan nurse? Your managers? Your trade union?
Thanks for the work advice Marilyn. It is so tricky, especially as I really have 2 little jobs (so not much to reduce in terms of hours in each) that I love. I don’t want to get so tired I have no time for family. But, I also don’t want to just have hospital in my life when family are at work and school!
I just wish I had a crystal ball!!!
Can I just say how great this thread is? I too am on Capecitabine for lung mets (I’m 31) and am feeling absolutely fine (apart from the sore feet and hands but Udderly Smooth sorted that out, great tip btw whoever that was). You (we) all seem to just be getting on with things and I know that I definitely found it harder to cope emotionally and mentally with primary BC weirdly. I guess the hair falling out/IV thing had a lot to do with that. But also, I sort of think that having secondaries is a different ballgame anyway - with primary I allowed myself to be much more emotional, whereas this time my (our) life is literally in danger and I (we) have no real choice other than to make the most of my (our) situation. And for once, I have some real perspective. All the silly little things that used to piss me off and upset me have just sort of disappeared and, ironically, I’m much more chilled and calm (and happy largely!) than I was in previous years. Anyway ramble over, I just wanted to say how bloody great you (we) all are. Love to you all xx
I quite agree. Not a lot bothers me now and everyone is amazed at how happy I appear to be and still smiling and full of fun! THank goodness I am, if you lost your sense of humour as well as your health it would be a real bummer.
When you have had the worst possible news (secondary diagnosis) nothing ever seems quite so bad again, every day is a bonus! Sounds trite but it’s true. PLUS, it was light here much longer today, just going dark now so SPRING is in it;s way and my snowdrops are nearly out!!! Hopefully it will soon be time to move from sofa surfing to patio surfing under the brolley! Roll on Summer!
Sue x
PS. Still slathering on the Udderly Smooth here too!
Hi,
I thought I was actually in denial. I also seem to be handling this better than I thought, although I feel a bit in limboland still. When will it crop up again and where?? I have no patience for people whingeing about things (hence my problem tolerating man flu in the house). I am still devastated, but it’s different this time. My problem is stopping the “what ifs…” …
I am feeling a bit like an old fart, but I think it might be the zoladex at work and have lost appetite. Do any of you still have a glass of wine???
I am on day ten of capecitabine, and my treat is a lovely long glass of red wine and soda. I haven’t been told that I can’t have it, and I certainly haven’t had any side effects so far.
There has got to be some treats!
I have also found myself thinking grim thoughts about the whingers around me but then realise that our problems are our problems whether it is a secondary diagnoses or man flu they are all important to the person with the problem.
My question is can I go swimming, sauna, jacuzzi type stuff? Anyone got any experience or directly asked the question?
Have whatever you fancy in moderation. I had a glass of white wine with my lunch today and enjoyed it. Other times I don’t feel like it. I like a G & T too, also Champagne when I can get it and chocolate and lots of other things! If you feel like it have it! My Drs, my BCN and my MacMillan nurse all advocate anything in moderation, now is not the time to deprive yourself of what you want and make yourself miserable.
With regard to jacuzzi and steam rooms I have avoided both because of germs and because I have lymphoedema in my right arm and extremes of heat/cold can affect that. Swimming is fine, although I don’t swim when I am on chemo, again because of germs - warm, damp atmosphere etc ideal breeding conditions for bugs.
What if…? Yes, it would be wonderful to have the benefit of hindsight and know how long we have got but we haven’t. The more time passes since my diagnosis the easier I find it to deal with the what if question. Make the mnost of each day and try and do something that you really enjoy, I like walking and reading, cooking and baking - maybe boring to some people but just fine for me AND socialising with my pals.
Dentist? I go when my chemo regime has finished. I see the hygienist and the dentist but apart from cleaning & polishing I haven’t needed anything else doing. JUst make sure you tell them all the drugs you are taking, they particularly need to know about Ibandronic acid eg Biphosphonates - bone drugs.
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