Xeloda / Capecitabine - Your Top Tips, please?

[2catlady]

Good morning cap,manky toe gang,hope we are all okay.
Else,welcome to the cap gang. Sorry you are joining us but you are very welcome. My SE is nausea. And now a manky infected toe,oh you just love the peachy devil pills lol.
Each cycle can be different ,some people get all the SE others none.
My taste in food as changed . I'm a vegetarian and now have to force veg down as can't stand it !!!! And I've now got a terrible sweet tooth,which I never had before.
I had double whammy diagnosis like you primary and bone mets last year. Was put on hormones but failed as cancer changed to triple negative. Cap is my first chemo as I now have bone progression and lung and liver mets. This disease just keeps on giving,it's so generous lol.
Katherine,how are you feeling ? Hope this extra week off is helping you get your strength back.
Good luck cap gang. I've got another appointment on Friday to see if bloods okay and pick up devils ,hopefully. Still feel rubbish but hopefully by Friday I'll be great.
Huge hugs,Helen xxxxxxxx

[nicky08]

Hi Else
I had hormone treatment for 4-5 years after my bone mets were diagnosed and moved on to Capecitabine when the mets spreads to my liver last year. It helped shrink my liver mets considerably until June of this year when a tiny new met showed up in my liver and I moved onto the IV chemo I'm currently on. It's a long story but I should have had this chemo last year but couldn't for other health reasons so I was lucky to get a good 18 months out of Capecitabine when it really wasn't the right treatment for me. As you have said some ladies have been on it for months and years so let's hope it works well for you.
I found that I needed a dose reduction after the first one so went down to 80% and stayed on that for the rest of the time. I did get a few splits in my fingers but only occasionally. My feet didn't get really painful but the skin did peel a lot even though I moisturised every day, but probably not enough. When they were bad I had an extra week off and this did help a lot with them. I also found I had this toe problem that everyone has been mentioning and I thought it was just an in growing toe nail, all very strange. I didn't get any taste changes but wonder if you are on any steroids for the nausea asI think they can affect your taste. I found I tolerated the tablets better the longer I was on them, it took a good few cycles to feel OK on them and after that I was fine, went on holiday, ate what I wanted and generally didn't feel too tired. My hair thinned at one point which was odd and I thought it was all going to come out but it stopped and wasn't noticeable, only to me!
Hope you get on well with the tablets and I'm sure you will get some extra tips and replies from the rest of the Cape gang 🙂
Nicky x

[bertie1]

Hi Else sorry you've had to join us but you will get plenty of support from all us ladies on here.I am on my fourth cycle off Cape but have had my dose reduced twice because my hands and feet wer sore,I also had an extra week off after second and third cycle to give them time to recover .I have also been more tired on this cycle but my feet and hands are ok at the moment .the sore hands and feet are the worst SE I've had,i haven't had any nausea or change in taste it seems to effect people differently.Feel free to ask any questions as there are plenty of ladies on here who will be able to answer you and also give you plenty of tips.
Take care
Kaye xx

[Else]

Hi there.

I am new on this forum and would like to intruduce myself. I was diagnosed with secondary breast cancer nearly 3 years ago (bone mets). I missed the primary stage as the cancer had spread to my bones before being diagnosed despite having all the usual mammograms etc. My treatment until a few months ago has been hormones and a bone strenghening drug, and it has kept the cancer at bay with some radiotherapy.

I have now been put on capecitamine and is on my second cycle of this. I think the idea is that I will stay on this drug if it does the trick and the side effects are tolerable. So far the side effects have not been too bad, mainly nausea. I have not so far had the hands and feet effect.

I would be very interested to know other's experiences, i.e. do the SE get worse the longer the treatment or do you get 'acclimatised'.

One odd SE is that my taste in food has changed, I cannot tolerate anything too sweet. Has anyone else had this?

I have seen posts from some that have been on the rreeatment for some considerable time and that is very encouraging.

I hope to hear from some of you, and wish you all the best.

Else

[Katherine2701]

Thanks all. I am soooo hoping that this was a bug as the pains were excruciating. I have to say I feel so much better having this extra week off! I think perhaps it was just SEs as you all suggest but wishful thinking that it isn't. Anyway, I feel like I'm having the holiday of a lifetime now as I feel better and am not back on until Friday. Hooray! I'm hoping you are all managing the SEs better than I am and good luck to those getting results soon. I am really keeping my fingers crossed for you all, my lovely group of friends!

[Barton]

Heloo Cappers, hope alll are coping with side effects.  Moneck, glad you got your next lot of pills - wishing you few se's!  Kaye - sorry to hear you are extra tired this time around - hope it clears a bit for you.

I have had extra tiredness this cycle, too (cycle 6), and although my hands are fine this time around, my feet are getting the burning coals mixed with broken glass feeling, and it's been getting me down.  I also have side effects from the daily Fragmin injections (blood thinner re.DVT) - a red and itchy rash.  Trust me to get one of the "uncommon" side-effects.  It drives me nuts at times, though.  And the bruises!  You wouldn't believe the size and colours of some of them!

Bev - just wanted you to  know I am still thinking of you.  I think you were a little ahead of me on the "cycle" treadmill.  I have a CT scan booked for the coming Friday, and the results are due next Thursday.  As I can you can probably guess, I am extremely nervous.

Helen - hope you are ok, and everyone else.

Best wishes,

Barton.x

[bertie1]

Morning ladies hope we're all doing okay it's very quiet on this thread today.Well another wet and windy day here in Wales so looks like it's gonna be a PJ day for me ,feel a bit more tired on this fourth cycle of Cape so gonna have a nice lazy day.
Take care all
Kaye xxx

[Moneck]

I arrived in time for my chemo 'check-in', weighed myself & filled out the side effects sheet. Then one of the nurses came to tell me that the clotting factor was only 94 when they like it to be over 100 - funny this never happened in the 9 cycles of Cape last year / earlier this year. Just hope it has started to kick the little 'ugger' as well.

Easy, take more blood but my although my veins were clearly visible they would not give!! Third time lucky and luckily he only needed a little. Knitted while awaiting result & it was up to 110 so I could get cycle 11 - 2nd in this session. 

The hospital have changed the appointment system & I now have a sheet with 5 booked appts taking me to end of Feb. If you have a delay in treatment they just do another schedule accordingly.

Moneck

[Bevlaar]

Katherine. ...i only got those symptoms on my week off the cape too! Usually the 2nd day after finishing them. Just took 2 loperamide (imodium) that the hospital prescribed and it stopped then xxx

[stresshead]

Hi Katherine, i too suffer with stomach cramps, griping pains and diahorrea but only for a few days each cycle, usually a few days into the cape. I was prescribed codeine phosphate but told by the chemo dept to contact them before i took any. May be worth you enquiring.

[belinda]

Yes that's very true Helen, sometimes it's the week off Katherine that you can feel the worst. When you are up to the permitted brim, so to speak, of chemo. Hope you can get something to help. X

[2catlady]

Katherine,you can still get side effects on week off. I always get one dose of diarrhoea and bad stomach cramps on week off!
The pills for IBS buscopan or Imodium may help.
I took Imodium the ones that just melt on tongue and they really helped.
Eat when you feel like it don't force yourself.
Take care,huge hugs ,Helen xxxxx

[Katherine2701]

Hi Bevlar, thanks so much for your response. To be honest I'm not sure if it is the Cape as it is on my week off. I wish there was something I could take as the pains are so bad, or at least were this week. Did you take anything for them? It puts me off eating and then I lose more weight which I worry about. I don't know, I don't know if everything is a side effect or what is going on.

[belinda]

I was a long timer with Cap, yes me too with the big toe issues, TCP or similar helps. X

[Bevlaar]

Katherine...dont think it's gastric flu....one of my main se's on cape was gripping stomach cramp pains followed by diarrhoea. I had this each time on my week off the tabs. It made me go quite hot and "flushy" as well. It probably is the Cape. Think a lot of other ladies get the same too.
Hope it gets better for you love xxxxxx

[2catlady]

Good morning cap gang,
Oh no Katherine,that sounds awful. Hope you feel better soon.

I've got germolene on my toe and silver plaster too. It's still sore. Hoping I can go and pick peachy devils up soon and bloods are okay. There's nothing you can do to improve nuets either grrrrr ( I've been googling)
Soaked foot in tcp last night and hubby says whole house smells of TCP now. I don't mind as I like the smell lol.

Feeling a bit better today ,still really tired. Hips in agony though and shooting pain down leg. I did mention it to onc nurse who said oh that's not a chemo SE it's just sciatica ask your GP for some pain killers !!??!?! I said to hubby ,what???!!! Should she not realise it could from bone mets.
Well,I did mention it to onc on call who saw me not mine as he's on holiday for three weeks! He said I may need some rads ,he'll put it on notes. Still no news on CT that's been put on notes too to chase up.

Oh well that's my odd news,nothing exciting. Just puss and pain,what's new lol.
Huge hugs to manky feet cap gang,Helen xxxxxxxxxx

[Katherine2701]

Hi Helen, I've got the same - another week off the peachies as I have some type of gastric flu.. No vomiting just diarrhoea but hideous griping stomach pains. They've told me not to have the Cape until I'm better. The doctor thinks it is viral but I wish the pains would go! Hopefully I will feel better in a couple of days.

Also, I've been using germolene on my big toe and it has taken away the soreness a bit. I'm hoping that works. Good luck all of you, Katherine

[bertie1]

Helen sorry about the bloods but at least you get an extra week off so that will give you more time to recover.I have also had an in growing toe nail since starting Cap and it really was painful so sympathise with everyone who's having this problem.Ive never had one of these before but my toe was quite inflamed and swollen by the Cape so assume that's what caused it ,I managed to dig it out and it has been better since.These tablets certainly are harsh on your hands and feet.Hope everyone has agood weekend.
Love
Kaye xxx

[Hilsy]

Thanks for the tip Jo, toegate indeed! Helen hope you'rs is soon better sounds nasty! Bless our little piggies going to market (they should have stayed at home) x

[Mitch23]

hi everyone

shall we call it "Toegate!"  The mystery of the infected toes!! youve got to laugh man! 

When i showed my onc my infected toe he said dont use toe clippers use scissors. Cut straight across - no curves. Im going to see podiatrist [spelt something like that!] to get them taken out and when he takes them out will get anti-biotics because it will get infected straight away.

Hope everyone is well today.

jo xx

[2catlady]

Hi,cap gang,so glad I went to GP yesterday and got antibiotics as gross puss filled toe! Sorry if you're eating 😉 what is it with us lot and manky toes lol!
Yes,at least it's another week off. But worry the little Bs are partying while I'm having a break.
Enjoy your weekend ,huge hugs ,Helen xxxxx

[Barton]

Hello, Hilsy, so sorry to hear about your toes. Be good and look after them! Everyone needs their toes! Best wishes, Barton.x

[Barton]

Oh Helen, shame about the pills, but as Bev (?) said, at least you get another week off to recover. Look after those toes and get plenty of rest. Best wishes. Barton.x

[Hilsy]

Omg!! I'm joining the big toe club now too!!! What the hell what the hell?! On round 4 nasty buggers!!! Hope all are ok (with our rotting feet). X

[Bevlaar]

Oh helen. ..Shame about your neutrophils. Never mind you get another chemo free week instead! Go out and start some xmas shopping maybe? Hope all will be ok for next week xxx

[2catlady]

Afternoon cap gang,well no peachy devils,apparently bloods not good ,those neuts I was asking about were very low so I can't have cap until next week if bloods pick up.
They also thought I had clot on lung which was causing breathlessness so stuck there for four hours having X-rays and walking around with things clipped to me grrrrr.
Hugs,Helen xxxx

[Barton]

Thanks, Katherine, it makes me laugh too, just because my sister hates it so much. I have to do it now, though as we have been wandering around bed and furniture shops all day and they are a little sore now. Off to grease my feet! Best wishes, Barton.x

[Porkie]

Good morning ladies. Katherine - I had docetaxol earlier this year and this made the ingrowing toenail that I had become inflamed and soo painful. I went initially to GP who gave me antibiotics but this didnt really help that much so asked for referral to podiatrist. In the end it ook so long I went to a private podiatrist (but take care if you do this - research well). He did a partial nail removal - which is where they remove part of the nail down the side. Procedure seems to have worked - but it did take a long time to heal.Hope this helps.xx

[2catlady]

Good morning cap gang,
Katherine I saw GP who said just let it grow out !!!but gave me antibiotics because I was starting cap today and toe was inflamed . And oh boy agony.

Well I'm off to pick peachy devils up soon.
Good luck ladies and stay strong,Helen xxxx

[Moneck]

Long before i started on Cape I had a badly bashed & non growing big toenail, it got sore around it after 4 cycles & i also had blisters. GP offered to remove it but referred me to the Podiatry unit at a local hospital. No pain when nail removed & given subsequent appts to check my feet & dress any blisters. If I needed to go between 3 wkly appts I only had to ring & was usually seen same day.

Moneck

[Katherine2701]

Thanks. Daisy. Hope you are having some better days now.

[Katherine2701]

Barton, every time I think of you I think of you saying 'just off to grease my feet'. It makes me laugh so much, bless you!

[Katherine2701]

Helen, have you got anything from anyone to help with your ingrowing toenail as I'm pretty sure I've got an ingrowing big toenail on my right foot. Did you speak to your nurse or your GP or anyone? Just not sure what to do and who to speak to next?

[Katherine2701]

Bev, you will always be one of my 'go to' Cape ladies whether you're on it or not!

[Katherine2701]

Jo, I absolutely have this each cycle. Not sure if it's the case but I just imagine it's the Cape destroying all those little cancer uggers!

[2catlady]

Hi,jo,yes,I do! I can't lie on my right side at night as it hurts. Never did before cap!!
Huge hugs,Helen xxxx

[Mitch23]

Evening everyone!
Was just wondering if anyone on cape with liver mets has what feels like a dull ache or stabbing pains In their liver at the beginning of their cycle?
This is the third cycle it has happened and goes on for about three to four days!
Any input appreciated.
Hope everyone is well
Jo x

[2catlady]

Bev,you will always be in the cap gang xxxxx

[Bevlaar]

Nooo! I won't be part of the Cape gang anymore...boohoo! But I'll still post on here with you as a docetaxel gal!
Helen hope both you and your sister are doing well. Im sure your heart will be fine...they just like to check absolutely everything. I remember having an ecg 9 years ago before my FEC. Just precautions.

I heard today that my friend's sister has just been dx with brain mets ....22 YEARS after her primary!!
Seems we're never in the clear. ....oh well onwards and upwards.
Love to you all ladies....bev xxxxxxxx

[2catlady]

Good afternoon cap gang ,how are we all doing?
Was on ward with my sister who was getting assessment ready to start her chemo and she mentioned to nurse I was breathless grrrr.
She said cap can effect the heart! So I need a scan thingy tomorrow when I pick up peachy devils!!
I'm sure it's just the cap as I'm great this week.
Hope everyone is going okay with SEs.
I've got an infection in big toe and oh boy is it agony so on antibiotics ,apparently cap can do that too grrrr to peachy devils.
Well take care ladies and long may the devils work,hugs ,Helen xxxx

[stresshead]

Thanks to all for your info and reassurance.x

[daisy113]

Hi Katherine. Thank you for your lovely thoughts. Not sure if different antidepressants are recommended in different parts of the country but where I am nearly all of us are on citalopram. It works a treat for me really levels you out and helps me sleep. Except tonight as the steroids still hyping me up Its a take it very easy day tomorrow. Love to all x

[2catlady]

Hi,Cw,yes,you must take cape with food as it's broken down in gut and is absorbed more slowly apparently it can be dangerous if absorbed to quickly ie no food.
10-12 hours is okay even a hour or so less. The amount of food is not important but you must eat something .I struggle with nausea on cap so eat toast all the time. If I have something on tummy it's much better.i take mine with basically the last mouth full of breakfast and dinner. Take them with water too .
Huge hugs,Helen xxxxxx

[Barton]

Hello cw17, please don't worry about the amount of food. At my chemo induction meeting I was told by the chemo nurse that it doesn't have to be much at all. She said that a yoghurt or a couple of biscuits or a banana would be enough, and I have certainly found this to be the case. They should definitely be taken after or with food, though. I think the reason is that they are absorbed much more effectively when taken with food. I also believe (forgive me if I have this wrong- Helen, you would probably know better than me on this point!) that it should cut down on nausea if taken with food. Good luck to all the Cap gang. Barton.x

[mrsblue]

I think I remember being told by onc team that the gap between taking cape doses should be at least 8 hours.  But if in doubt please check with your own medical team.

As to why Cape should be taken after food... again I think I've seen somewhere that all the research (clinical trials) was done on patients who took their tablets after food.  I don't think it's because of problems as can happen with ibuprofen and other related painkillers, these should always be taken with or immediately after food.

[stresshead]

Good morning Cape ladies.....wonder if anyone can help with info on eating before taking cap tabs. I believe this may have been discussed before but not sure on which thread...never know whether to use this one or the bone mets one which everyone with SBC seems to use...

I have problems with the spacing of the tablets and what to eat beforehand.

I try to have at least a  10 hour gap between doses but this doesnt fit with meal times so often find myself having to eat extra...this isnt usually a problem but for the week following my iv chemo/cap i feel really sick so dont feel like eating at all.

i only have toast or cereal for breakfast most mornings before i have my tablets but seem to remember being told that having some cake or a few biscuits wasnt enough so am now worried that my breakast isnt enough . I know the tabs are most efective after food so wondered if anyone can tell me what they do. Sorry if this sounds daft but i'm sure you know the feeling of worrying about everything!  x

[Barton]

Oh Helen! Wouldn't that be something if the little uggers WERE on our side! I love that idea. Good luck to all Cappers, and so sorry to hear so many of you are having painful trouble with your big toes! So far, I seem to have managed to miss that se (thank goodness). I have, however, developed one of the "uncommon" side effects of the Fragmin injections - I have a lovely red, itchy rash across my tum! Went to Boots yesterday and asked Pharmacist and she recommended Aveeno cream. It helps for a little while, then the itching starts again. You can apply as often as needed, though. I have found it a very nice hand cream as well. Have been greasing my feet with the Vaseline, too. (My sister absolutely HATES me saying "greasing my feet"!). Have a great holiday, smartie. Best wishes, everyone. Barton.x

[2catlady]

Good morning c gang,how are we doing?
OMG,I've got an in growing toe nail,pain kept me awake last night. I've never had one before. Well that's what I think it is pain on edge of nail bed of big toe. A bit swollen. I got up to put a plaster and cream on it last night ! Grrrrrr
Hugs,Helen xxxxx

[Katherine2701]

Bless you Daisy. I'm sending you hugs and saying a few little prayers for you. I hope you feel better so soon. K xxx

[Katherine2701]

Snap Jo! I kept saying to anyone that would listen that I thought I had ingrowing big toenails! It isn't, just need to slap on more Vaseline! Hugs all K xxx