Xeloda / Capecitabine - Your Top Tips, please?

[Mrsmu]

Hello. I am new to the forum. I have been on capecitabine and denusomab since january 2014, with a couple of breaks. I have found the winning formula for the sore (understatement!) feet that works for me. Skechers memory foam shoes and aveeno cream. I tried flexitol and still sometimes use it at night, with spa socks, but the aveeno is the biz. My GP will prescribe it. Sometimes my feet are so cracked that they bleed. Then I put on fucidin ointment from the GP -originally prescribed for my hands and it heals within a day or so. I actually hate the denusomab injection nearly as much as the Cape but I am keeping well and stable so bring it on!

[Elily]

Cotton socks are useful but mine always fall off. Anyone tried clingfilm? Sounds a bit kinky but I have seen it suggested somewhere!

I use Udderly Smooth cream or Flexitol (both have a significant amount of urea (yum) to soften skin) and as an alternative to Vaseline I use Waitrose Baby Bottom Butter (tub version) which contains olive oil and camomile oil.

[lizH]

Thank you ladies for the help .... I shall buy some thin cotton socks and get the creams going , I may do the same with hands. Must remind myself to worn hubby before he see's me !!!!!!

Liz xxxx

[Stillhere]

Hi Liz, I'm the same as Ruth and have been on her one week on, one week off for 18 months as well, it does make the feet/hand syndrome much more manageable. I've just been lazy,not moisturised enough and now have a little split under one of my toes but normally find Vaseline and socks at night help a lot (as well as adding to one's general allure, of course!) Best of luck, think the regime above might be a Marsden one? Xx

[Nanofthree]

Hi Liz. I had this problem with cape, including the swollen feet, and the soreness under the feet was unbearable, apart from losing several toe and fingernails!!! I was on two weeks on a d one week off. Have now been on one week on and one week off for the past eighteen months and was assured the reduction in dose would make no difference to the effectiveness of this drug. Much relief regarding hands and feet and no swelling at all now. Might be worth enquiring about a reduction next time you see your onc.

Good luck
Love ruth xx

[Barton]

Hello, Liz.  Sorry you are suffering this side-effect!  The sore feet thing is a very well known se of Cap, and the standard treatment (advice from fellow sufferers) is to moiturise your feet as much as possible.  It also helps if you can stay off them as much as possible, but, of course, this conflicts completely with everyday life!  So almost impossible, really. Is it possible to moisturise in the evening, and then put your feet up for a while before going to bed?  Also swollen - hmmm.  I think it might be an idea to mention this to your Onc when you next see him/her.  I didn't suffer from swollen feet, but got the hot, "walking on a mix of broken glass and hot coals" feeling - yes.  I also get an itchy rash, but I get mine on my hands.  My GP gave me some stuff to help. 

Sorry if this is a negative post, Liz. 

[lizH]

Hi all,

Have some feet problems...... Sore itchy and swollen , any help?

Hope everyone are as well as can be.
Liz xx

[lizH]

Hi glo,
I feel exactly like you. The feeling of bloating and not able to eat much. I have been eating tiny meals and a yogurt when I don't feel like anything.

All the best
Liz xx

[Barton]

Hello, Glo, sorry you have had to join us. I haven't suffered from the bloating/pain that you have, but I believe it is a known se of Cap. Not  much consolation, I'm sure -sorry about that. I do, however, suffer from indigestion, but I have never had much trouble getting rid of it (if you know what I mean!). Hope the pain and bloating subsides soon. Hugs, Barton.x

[Glo]

I have just started this treatment for lung and liver mets, at end of first 2 weeks, and about to start week off. A bit tired but main problem is stomach pain, bit hard to describe but sometimes bloated, windy and an ache that stops me eating much, constantly feeling full. Is it a direct result of the tablets in the stomach?
Any advice greatly appreciated!
Glo x

[bertie1]

Hi Cap gang welcome to the newbies sorry you've had to join us but you will get plenty of support on here from all the ladies.I have been on Cape since August last year and hve just finished my eight cycle ,I too have had breaks due to sore hands and feet and low blood counts but has worked well for me so far ( touch wood) my TMS have fallen from 191 to 21 and scan results in jan were good only showed one tumour in liver ,which had halved in size and the rest in liver and chest resolved,still in bones but Denosumab is working well.Hope all you ladies are doing ok
TKe care all
Kaye xxxx

[2catlady]

Bumping up for Mrs Brahms xx

[Barton]

Hello Cap gang, welcome to the newbies, but sorry you had to join us.  I had an Onc appointment today, and have been given another 6 week break. I was  (I have to admit) moaning about having to do the Fragmin injections. The Onc (a lovely lady helping out my regular Onc as his Registrar was off sick) was very sympathetic, and, as my tumour markers have gone down again (from 30 to 22), they decided I could have a break from the Cap and so go onto another form of blood thinner. The Onc is going to write to my GP, so until she gets that letter, I'm still on the Fragmin. Hopefully, soon though, my poor stomach will get a rest from the bruises and lumps! Anyway, hope everyone else is managing ok at the moment. Hugs to all, Barton.x

[lizH]

Hi glo,

I have been on Cap for 4weeks now and s/e are ok apart from sickness which I am taking cyclzine and another at night which are doing the trick.
I have just, this morning, got a sore foot on the heal. Quite tender.

Lot of love
Liz xxx

[Glo]

Well just started this drug on Monday! Ploughing my way through the 84 pages on this thread! Some really positive stories so fingers crossed it works for me as total fail and progression on e/e combo!
Day 3 today so really early days!!!! Lung and liver mets.
Glo x

[belinda]

Ladies, my experience, I was on Capecitabine, no breaks, was too concerned Cap might not kick in again, for just over 4 and a half years. After Cap I have Doxorubicin, which worked well on the bc but a year later I suddenly developed serious heart failure due to chemo damage. This has effected my quality of life and my treatments ever since. But without the chemo I wouldn't still be here, I'm not moaning. 🙂
My late friend, a poster here, marilf, had nearly nine years of Cap with many breaks in between. In hindsight, a wonderful thing, I think I should have taken breaks. Good Luck to you all.x

[pam01]

Hi Macie. I have been on capecitabine for just over 3years. I have never had a long break off it....But have had up to a cycle off....(4weeks if you include the normal week off. Currently I am taking it for 2cycles and then having an extra week off......and after 3 lots of cycles like this taking 2 or3 weeks off....mainly to fit in with hols etc...usually my markers fall during the time I'm off...... My hands never return completely to normal but get much better and my feet recover as well....good luck with whatever you decide.xx

[Barton]

Hello Macie, so sorry you are having problems. I am in awe of you doing Cap for a year without a break! I could not have done more than the 7 cycles I did before the break - I was in an awful state! Dreadful breatlessness (I couldn't get to the back of a Tesco Metro in town without stopping 3 times for a rest, and burst into tears in said Tescos (so embarrassing!), and the same day burst into tears in the dentists. My Onc suggested the break after I told him about this, but I had been going to ask him anyway (although would never have suggested 6 weeks on my own). I had read a lot on the Internet that said breaks (and dose reductions) are fine, that it is the drip, drip feed of the tablets that does the good. It took several weeks, in fact, before I felt the benefit of the break,but I had no ill effects from the break. Whether I was just lucky or the Cap continued to do it's work during the break, I don't know. Please ask your Onc for a break. He will surely tell you if he thinks it inappropriate for you, but I am more than sure that you deserve one! Hugs, Barton.x.  Ps please feel free to ask if you have any further questions.

[Macie40]

Hi Barton
Thank you for answering my post on the bone mets thread that was a long time you were off capecitabine did you feel any bad effects being off so long or did you think it was all ok it certainly sounds like it did you good but i just worry that I shouldn't be doing this while it is working. I feel I desperately need time of after a year on it I am exhausted to the point I can hardly get up the stairs, hands and feet are bad, mouth very sore can't eat very well so losing weight.sorry for moaning but I am pleased for you that reduced dose seems to be working better.
Love Macie x x x

[Barton]

Hello Liz, congratulations on finishing your first cycle - it's always daunting taking that first lot of tablets, isn't it?  Sorry about the bloating feeling - I haven't suffered from that (fortunately) so can't offer any advice I'm afraid.  The only thing I can think of is, are you drinking enough water with the tablets (or too much!)?  Sorry you are having to put up with that, though.  Hugs, Barton.x

[lizH]

Hi ladies,

Just finished my first cycle and it has been ok.
Creaming my hands and feet morning and night in preparation of the dreaded!!

The only side effect I have had is that when I have taken the tablets at night I feel really bloated and painfull in my tummy like I have eaten loads and loads of food. I have a small meal as it is.
Anyone felt like this?

Love to all

Liz xx

[Barton]

Hello Liz, sorry you have had to join us, but glad to have you with us (if you can make sense of that!). Hope Cap works well and for a long time for you. Hugs to you, and all the rest ofvthe Cap gang. Barton.x

[lizH]

Thanks for the reply Nicky .

Hope your doing ok.

All the best to you
Liz x

[nicky08]

Hi Liz
Sorry to hear taxol hasn't helped you but I hope you do get good results from Cape. I must admit I didn't get great results from Docetaxel (Taxotere) whereas before that I had always responded well to any chemo I had including FEC in 2008 and Cape from Feb 2013 to Aug 2014. Cape worked well for me for nearly 18 months even though I should have also been on Herceptin at this point as my receptor status had changed. It kept my bone mets stable and shrunk my liver mets until a tiny new met showed up on a CT scan which is why I then changed to a new chemo regime which included Herceptin.
Hope your markers start coming down soon - and your stress levels.
Take care
Nicky x

[lizH]

Hi ladies,

Just back from consultant and I have had no luck with taxol so she is changing me to this drug.

Feeling pretty stressed at the mo as my makers are really high!!!! Anxious about starting a new drug too.

Love yo all

Liz xx

[springsummer]

Hello there desi2

just saw your  thread on vomiting after taking Cap. i was on it for a short while (3 cycles) didin't work for me BUT I was also vomiting and the Onc said to dissolve the cap in warm  water - check with your doctor but i am sure that is what you can do if yo keep on throwing up 

[Barton]

Thank you Sheila and Helen for your good wishes. I'm very cross that Cap has stopped working for you, Helen, but I'm hoping that Erubilin (sp?) Will do it for you. Sorry to hear that you will probably lose your hair, though. Still, if it works, that can be put up with (hard, I know).

Hope the rest of the Cap gang is doing ok, with few and mild se's. Barton.x

[2catlady]

Wow,barton,that's fantastic news. Long may cap work.
Huge hugs,Helen xxxxxxxx

[roxy12]

Hi Desi, hope the nausea has settled down and you are feeling much better.

Barton that is great news about your scan. I was also under the impression that you could stay on cap for as long as it worked for you. Some people have been on it for years. Hope that is the case for you.

Love Sheila. Xx

[Barton]

Thanks stresshead. I wish you good luck with your scan - such a shame you will have all that stress near your birthday and silver wedding anniversary! How long do you have to wait for your results?

As regards your 10th cycle being your last - I was under the impression that I could stay on it as long as necessary (and as long as it works for me), but the chemo nurse asked me if this was my last cycle. When I said no, he asked if I was having 12 cycles then. So now I don't know what is happening! I have been given an appointment at the chemo dept for the 10th cycle, and an Onc appointment for the 11th (apparently I don't need to see the Onc for my next lot of pills). I will have to try to remember to ask at next Onc meeting in 6 weeks.

All best wishes to you. Hugs. Barton.x

[stresshead]

Barton, so pleased to hear your news. I've just finished 10 cycles of cape...as much as my onc says i can have..and am waiting for my scan appointment which s due in the samewek as my birthday and silvwer wedding aniversary!! alrerady have results appointment. Dreading it but hoping for a result like yours. x

[Barton]

Hello Cap gang! Home from hospital after collecting next lot of tablets (Cycle 9), and was given results of CT scan from last week. Everything is stable, even after the 8 week break I had - I am SO relieved! The lower dose is working re se's (so far, anyway). Hope everyone is doing well, with few se's. Hope the sickness has subsided, Desi. Hugs, Barton.x

[Elily]

I don't feel sick after taking Cape but do when I wake up in the morning as I have a lot of mucus on my lungs. By the time I take the Cape (rapidly on my way out to work) I'm not nauseous.
An alternative to Vaseline is Waitrose Baby Bottom Butter (the jar not the tube) which is made of olive oil, vanilla and camomile. Smells nice and does a similar job sealing in the foot/hand cream.

[2catlady]

Tracy ask for both types of anti sickness as apparently you can use both together. The cyclizine acts on the brain to stop you feeling sick and the met...(sp) empty your stomach fast.
But please get something as I know feeling sick all the time is not nice. By dinner time I have to force food down so I could take pills 😝. It's like the vicar of Dibbly and the christmas sprouts at my dinner time.
Take care and don't suffer . Also get Vaseline in for feet /hands Put on top of cream or by its self as great and cheap. My hands look like I'm 90 all wrinkled and finger tips dint! But I've not had splits in them.( im still taking my cap as no one said stop,even though it's not working!! It is my second week so onc will probably tell me to stop on Thursday lol if he remembers,shame I couldn't leave him at Fawlty towers. But saying that the nurses on onc ward are lovely,not like Fawlty towers )
Huge hugs,Helen ex cap gang lady 😔 xxxxxxx

[Stillhere]

I have felt sick quite often, even in my week off but I take metocloprimide at the same time as every Cap dose. These have worked really well for me but there is a raft of anti-sickness pills available so give a few a try. It's so miserable feeling sick, hoping you feel better soon xx

[2catlady]

Tracy I answered your question on bone mets xxx

[Desi-2]

Thank you both will try taking with food this evening rather than after xx

[Barton]

Hello, Desi - I haven't had nausea/vomiting with Cap luckily, but I  know some people do.  It's miserable being sick, isn't it?  So best to be avoided if possible.  I can only echo Belinda and suggest you try eating a little more before taking the pills.  Also, perhaps try them half way through eating and hopefully the food will "coat" the pills!  Sympathy and hugs, Barton.x.

[belinda]

Perhaps the biscuits were not quite enough Desi. I understand the tablets work with food so although you don't need a big breakfast perhaps more than you had this morning. Hope this evening's tablets are trouble free. X
This info is from the Macmillan site,
You take capecitabine tablets twice a day. Swallow them whole with a glass of water within half an hour after a meal. Capecitabine works best if it's broken down in the stomach with food. Take them in the morning after breakfast and then after your evening meal. The doses should be spaced 10–12 hours apart.

[Desi-2]

Just had a few rich tea biscuits as I've been feeling very sick anyway and yes it was 12hrs I hope it doesn't happen again I feel so weak and wobbly. If it does continue I guess il be taken off it 😟

[belinda]

Hi Desi, I never vomited whilst on the tablets. Are you taking them with food? Just a weetabix is enough, don't need a substantial breakfast. And leaving ten to twelve hours between doses? Hopefully this was a one off.
Take care. X

[Desi-2]

Morning ladies I've been sick this morning about 30min after my pills, the booklet I have says contact chemo unit if you vomit more than once in 24hours anyone have this problem? X

[Elily]

Does anyone take Spatone or another iron supplement? I am currently on 4g of Capecitabine per day (i.e. 4 x 500mg tablets morning and night for 14 days out of 21) and have trouble maintaining a decent haemoglobin level. I've had 3 transfusions since October and low Hb levels mean I can't concentrate as well as I should at work and I can find myself getting rather tired and hills and steps seem more tiring than they should!
So, would an iron supplement help? Are there any contra-indications?

[Barton]

Thanks, Stillhere, yes, I have noticed my urine smells horrid while on Cap. It went back to normal during the break I had, though, thank goodness! It's the nasty smell of the 150mg tablets, though, that gets to me - yuck! I would have said it was the Cap itself if the 500mg tablets smelt the same, but they don't (not to me, anyway). Oh well, keep taking the tablets! Hugs, Barton.x

[Stillhere]

Can't say I've noticed, I just unpack them all at once (2x150 and 3x500) and swig them down with a metocloprimide which does taste foul and a squash drink. It does give urine a horrid smell though, sorry to be basic!!

[Barton]

Can I ask the Cap gang - those who are taking both sizes of pills (500mg and 150mg)?  Do you notice a horrid smell/taste to the small ones?  I have a hard job making myself take those out of the little plastic capsule, let alone actually to take the pill!  The 500mg ones don't seem to have any smell or taste to them though (which is good!). Hugs, Barton.x

[Barton]

Hello, Desi - that sounds much more like it!  At least you have had a nice gentle start!  Lets hope it continues to be gentle on you.  Hugs, Barton.x

[Desi-2]

Well feeling very silly his morning but having checked with my oh he said the nurse def said one of these twice a day sheer coincidence that it was the smaller dose box of of pills she had opened. So from this morning I'm now on 1650x2
Hope everyone's having as nice weekend as poss xx

[Desi-2]

Omg just looked at pills and I've only been taking one of the pills! There's another box of 500mg of which I should be taking 3!! So that's 1650mg twice a day Thanks ladies best start correct dose in the morning xx

[Desi-2]

Barton I've just double checked the dosage on my Cape and its definately 150mg I thought it sounded a lot less than others! I wonder if it's wrong! Think I will have to ring BCN on Monday and check. X