Xeloda / Capecitabine - Your Top Tips, please?

[george]

Hi TB63,
Thanks for your update, always interesting to read how others are getting on. I am going into my 14th month on Cape and it has managed to keep things stable for me. TMs have been rising but latest result yesterday was same as a month ago so onc has classed me as stable for the moment.
I hope you don't mind me asking, but how did you get on Ribociclib? My trust only funds it for first line treatment. I have heard really good things about it so hope SEs ease up a little for you. Speaking of which, I am suffering a little with sore feet and peeling finger tips so spend a lot of time wearing thick socks and trainers. However, as long as treatment works, it is well worth it..
Lynnq, hope Cape working well for you. Sounds like you are well prepared with all your treatments for SEs.
Hope everyone doing well on this thread, seems to have gone quiet lately which I am sure is a good sign.
Have a good week all 😊

George x

[TB63]

History: 1997 first BC - Lumpectomy/Radiation, 2002 second BC mastectomies.  All clear until 2016 - metastases in lung/bones - given Xeloda for 6 months (apart from a bit of Diarrohea wouldn't have known I was on anything).  Brought markers right down.  Then 18 good months before new metastases showed up in the omentum.  Xeloda commenced again but hasn't brought the markers down.  Now introduced Letrozole with Ribociclib (side effects of Ribo not great and feeling knocked around).  Xeloda was really good - hardly any side effects.  Was taking 1500 mg twice per day - no hand/feet issues - think this depends on the dosage.

[Lynnq]

Hello again everyone and thank you for your tips.  I started Cape on Saturday 2000mg x twice daily.  I thought that was a lot Onc said that he would start on a low dose but I am 5’ 9” tall so I expect that is why.

Very  early days so no SEs but I am stocked up with udderly cream, non alcohol mouthwash and bought new oven gloves.

How are you Biker?  Hope that the wheeze is not too bad now.  You will have finished your first cycle now I think, I started a couple of weeks behind you.

Thanks for the tips on spacing the tablets Nicky, I do not like to eat dinner late because I have quite bad reflux, but I sometimes have late breakfast - not being a good sleeper if I lay awake I often lie in until 9.00ish.  I am having a snack - biscuit or yogurt or crisps at about 7.00pm and taking my evening pills then.  Seems that my days revolve around taking meds af the moment but I am sure it will all settle down.

good luck with your trial Janie, 

xx

[Biker]

Hi lynq  thank you your kind reply. I have developed a bit of a,dry cough and an annoying wheeze. Macmillan nurse at my local centre it's probably from the mets. So hoping this subsides when on cape a bit further on. Hoping cape agrees with you. Best wishes xx

[tatyana]

Hi Lynn,
I was on cape for 4 months earlier this year, found the SEs very manageable, no nausea at all, occasional mild diarrhoea so I made sure I always had some imodium handy, but rarely needed it. I did have hand and foot but nowhere near as severe as when I was on docetaxel previously. Start with the Udderly cream that has 10% urea, and use it frequently and lots of it! I kept a tube by the kitchen sink (but wear gloves as much as possible, preferably lined ones to protect against hot water, and oven gloves not just for the oven but even for stirring saucepans on the hob). Another tube in the bathroom and a little one in my handbag!

I did get some fatigue but I also managed trips to Spain and Greece!

[nicky08]

Hi Lynn

I found when I was on Cape back in 2013 that it took my body a couple or so cycles to cope with it. I didn’t feel awful and didn’t have any nausea (which I was worried that I would have)  but just not quite right. I also found, as some other ladies have in the past, that my first week off I actually had more SEs, notably the big D! All of these SEs became less of a problem as my body seemed to accept the nature of the drug ie a daily dose for 2 weeks then a week off rather than the blast from IV chemo. I did get the hand and foot syndrome but used a cream with a high urea content (25%) when it was bad. I also had a dose reduction of 20% pretty much straight away which helped with the SEs but was still effective for the 18 months I was on Cape. A lot of people stress about when to take the tablets but as long as each dose is not closer than 8 hours from the next or previous one you should be OK. I didn’t bother with getting them exactly 12 hours apart as it would have messed up my mealtimes and I wasn’t having that! Also, once I had settled into the routine of taking the tablets (there can be quite a lot of them each time depending on your dose which is calculated on weight x height) we did travel abroad as well as in the UK. We tended to go in my week off as it meant I didn’t have to pack quite so many tablets more than for any other reason.

Good luck and I hope you get a long run out of the peachy pills 

Nicky x

[kirky_68]

Hi, my main SE was fatigue which built up over time gradually getting worse each cycle. When my dose was increased to 2000 I got chest pains but that resolved immediately when I dropped back down to 1500. I was lucky enough not to suffer from hand and feet issues though I do have regular chiropody and pedicure appoinments to keep on top of hard skin etc. Regarding foot cream, get the one with 10% urea. Keep on top of mouth issues by rinsing regularly with alcohol free mouthwash and drinking plenty of water.

Best of luck

Paula

[Lynnq]

Hello Biker

How are things going - still early days.

I am due to start cape on Friday, seeing Onc for consents etc and he says he will start me straight away.

I would be interested in when the SEs start as well but as you say we are all different.  We were hoping to book a short break away somewhere in the UK but have put it on hold until I see how it affects me.  

Udderly cream has has been recommended for sore hands and feet, I have looked on amazon but there seems to be so many different kinds- can anyone let me know which they used ?

I have not been having any treatment at all since the end of July - apart from about three weeks on Tamoxifen which gave me horrendous UTIs so had to stop it - and my TMs are rising significantly so am hoping for the best.

x

[Biker]

I have just started cape last week, not experienced side affects yet. A little nausea , maybe someone can tell me how long you are on it before side affects may start. I know we are all different, I am also on herceptin . I have lung mets , letrizol e was not working on mets, so that is why I am on cape. 

[Biker]

I have just started cape last week, not experienced side affects yet. A little nausea , maybe someone can tell me how long you are on it before side affects may start. I know we are all different, I am also on herceptin . I have lung mets , letrizol e was not working on mets, so that is why I am on cape. 

[janieb]

Hi ladies
I’ve just been taken off Capecitabine due to to progression (pleural and cardio effusion )after 11 months. I cut the finger tips of latex gloves off to help stop my fingers cracking. It works really well with Vaseline and then cotton gloves on top at night. My feet were bad too and shoes were a major issue - had to wear sandals all year - not great in Scotland ! I also had skin cracking behind my ears that I put down to my specs but Since I’ve stopped it’s gone away, so clearly an unusual SE !
Good luck to you all - all in all I felt pretty good and did so many great things while on Cape , wish it could have lasted longer. Oh well fingers crossed for a trial that I am eligible for
Best wishes to you all
Janie x

[nicky08]

Hi Lynn, it’s often a good idea to start the moisturising before you start the tablets, if time allows you to. I’m sure you’ve read a lot of this thread but a quick thing to check is the urea content of any cream (when hands and feet get really bad). The higher the content the better it is to deal with it, I found Boots own cracked heel balm the best (it has a 10% urea content as opposed to Uddley’s 5%) but it is quite greasy so only used it at night on my feet. My fingers got splits in them rather than getting really sore and they hurt quite a bit. I found ‘healing’ type plasters worked the best - as did an extra week off the tablets or a dose reduction!

Glad you got the chance to have a long break in France and hope you get to book somewhere later in the year. I’ve made the most of this year not being on chemo (I’m currently on Fulvestrant ) as I have been on one type of chemo/IV treatment for the last 4 or so years. We’ve had a few more holidays and mini breaks and going off to Italy in a week or so for a last bit of sun. When I get back I’ll find out my latest scan results and the whole merry-go-round might start up again so we will be making the most of our week away!

Nicky x

ps Hi to all other Cape crusaders, I hope the chemo is bashing the little users but giving minimal side effects.

[Lynnq]

Thank you Nicky and George.  

I have been warned about the blisters and sore hands and feet so am going to stock up on the recommended creams.  I have quite dry skin anyway so I do tend to moisturise often.

Hopefully the mouth ulcers won’t appear again.

after our hectic three weeks in France we were hoping to do a sneaky week somewhere sunny and just relax before Christmas-just husband and I....

Fingers crossed

x

[nicky08]

Hi Lynn

I remember years ago when the E/E combo was first being used in the UK that many of the ladies who started it had problems with mouth ulcers and these only improved when a dose reduction of the Everomilus part was made. My oncologist at the time had told me what a remarkable drug this was (he had worked on the research side of it before it became available on the NHS) and I said that he should read these forums as the SEs were pretty awful for most ladies! 

Hopefully you won’t get any mouth ulcers on Cape, I didn’t when I was on it and there’s not many ladies on here who have reported them although obviously a few might get them. Again,  any moons ago, ladies on Cape used to recount how they got blisters on their finger tips by handling the tablets but I (as did many others at the time) suspect that was more to do with the SEs of the chemo on the hands, which is a widely reported SE.

Good luck for the 21st and hope it works well for you.

Nicky x

ps Hi George, have a great trip to Valencia, haven’t been there myself but have heard it is a very pretty city. X

[george]

Hi Lynn

I was on the E+E combo too and had horrendous mouth ulcers; they were so bad I was drinking from a straw at one point. The treatment did not suit me so, after 3 months, I was changed to Taxol. I have not suffered from mouth ulcers since 😊
3 weeks in France sounds wonderful. We are just having 6 days in Valencia, but looking forward to it. Fly out tomorrow 😎
Have a good week and feel free to ask any more questions should they arise.

George x

[Lynnq]

Thanks again for responding, I received a letter from hospital yesterday and I will be starting Cap on the 21 Sept.

After Letroxole stopped working I was on Everolimus\Exemestane for a couple of months - I had the most horrible mouth ulcers and I understand that Cap can cause these as well.  Has anybody else suffered from these and do they eventually settle down, I am going to stock up with mouthwash etc.

George have a nice time in Valencia, we were in France for 3 weeks, had a fab time but It was very tiring, came home for a rest.

xx

[george]

Hi Lynn

Hope you are feeling a little more reassured now following Kirky's reply. I have been on Cape for 2 years with a 7 month break last year for an op. It has been a very effective chemo for me eliminating 4 liver mets and reducing the last one to a dot. Unfortunately, my TMs are starting to rise so onc said i will probably have to go on another chemo following scan next month.
I started on a high dose of Cape which I found tough during my week off as a had awful trouble with big D. Dose reduced to 1500 twice a day which really helped with SEs. I was worried about reduction, but Cape continued to be effective and my onc said it either works or it doesn't and that he has patients on very low doses for a variety of reasons.
Anyway, good luck with your treatment and great to hear you managed to fit in a holiday before you start your new regime. We are off to Valencia next week 😎
Keep us posted.

George x

[Lynnq]

Thanks Paula.  The Onc did say that one of the SEs of Cape is diahrea and that he would want to monitor that because I do have IBS symptoms caused by the Peritoneal mets and have lost a lot of weight.  I can see now that starting  low and increasing is a good way to go for  that reason.

glad to hea4 tha5 it worked for a while and that you are remaining stable at the moment.

[kirky_68]

Hi Lynn

I started this way round. Mainly because I had so many SE on FEC. I started on 800mg twice a day and increased monthly to 2000 then reduced back to 1500 as that was the bst balance of benefit against SE. 

I had good results, some reduction and then stable for 20 months.

Unfortunately stopped working and am now on Pac which again is keeping me stable for now.

Best of luck with your treatment.

Paula

[Lynnq]

Hello everyone

I saw Oncologist today and we agreed to start cape.

I had 16 pacitaxitel which kept me stable but made no improvement .  He put me on Tamoxifen but I had to stop it after a couple of weeks as I had such awful UTIs. Have had to have two lots of antibiotics and am still suffering a little but almost better now.

i have not had any treatment for four weeks as I was away on holiday, after Pacitaxitel my TMs were 272 but the reading from yesterdays bloods was 1235 so a vast increase.  

I will  start cap in approx 2 weeks, meanwhile he has ordered another scan as a starting point to monitor how cape works 

I have read through a lot of the posts on this thread and he seems to be ordering things differently for me, he says that he will start me on a low dose and then increase if I tolerate it okay - seems to be the opposite for most others who start on a higher dose and then reduce???   Has Any else done it this way round ?

my cancer is lobular and the problem area seems to be in my peritoneal - with some bone mets in spine and pelvis.  Hoping that there has been no further spread since last scan which was 3 months ago.

onc has always said that TMs are a good indicator for me so I am still reeling from the massive increase.

was on letrozole for almost five years with very few side effects but nothing seems to have worked since last year when TMs started to rise because of peritoneal 

sorry feeling a bit bit down but will pick myself up tomorrow 

xx

[george]

Hi Janie, sorry I can't help with your question. I have been on Cape for 2 years now ( with a 7 month break last year) but my onc has never really commented on my liver enzymes; he tends to focus on whether kidney/ liver function is within normal range. Could you phone your SBC nurse for clarification or ask to speak to your oncologist again, just to put your mind at rest? It does sound as if your onc is very much on the ball as he is requesting a scan.
Sorry I can't be any more help. Hope SEs are not too bad. I have learned to live with red, peeling sore feet🙄
Keep us posted

George

[janieb]

Hello 

has anyone had raised liver enzymes while on Capecitabine? My liver function had been good for the last three years but has suddenly jumped over the last cycle. Been on Cape nearly a year now. I'm worried

 the c has spread to the liver. Onc seemed puzzled and concerned and has ordered an urgent scan. Can't believe I didn't ask if it could be due to spread of cancer!  

Hope you are all doing great 

Janie xxx

[Carolyn52]

Bumping up for any new ladies reading.

[JMP]

Hi Mulligans,
I had an overdue eye check up yesterday and my left eye ( has Asteroid Hylosis) is definitely worse than previously. The Optometrist has booked me in for a scan of both eyes early July. I have implants in both eyes ( had cataracts) and been monitored for Glaucoma as it is in the family genetics.
The Optometrist did recommend some eye drops and I have requested them on prescription: Hycosan Extra.
Judith xx

[mulligans]

Judith my eye sight has gone a bit fuzzy. Only now abd tgen but get very blurred and tgen it clwars again. Weird. Might be a side effect as my eyesight always goes a bit foggy when i start a new drug

[SarahLousie105]

Thanks for your reply Judith. Good luck with wokring out the retirement. 

[JMP]

Hi Diamond23 and Sarah Louise, I’m on Capecitabine cycle 7. My dose was reduced from 4x tablets morning and evening to 3 instead ( current cycle) as I was so tired all the time.
Now I’m feeling better the diarrhoea has reduced too. I’m 61 and considering medical retirement too, UNISON are currently looking into that for me.
There’s no way I can commute 3 hours (to and from) to work in London daily now.
I’m having an eye check this week as eye sight hard deteriorated too since Feb 18, could be another SE of Cape.
Judith xx

[Diamond23]

I am on my 8th cycle of capecitabine, i have cholangiocarcinoma which is nasty bile duct cancer. I had breast cancer in 2007/2008 clear now of that. I have tolerated cape quite well with some hand foot syndrome , insomnia is a problem I use half a restavit tablet when it gets too bad and the brain wont't switch off it works well for me.
I too am considering retirement, do i want on my headstone 'she was a loyal employee till the day she died' hahaha NO I DO NOT. No accolades for that. Bless you and fight the the fight!

[mulligans]

Sarahlouise, i felt fine on first cycle but goy hit realky badly on 2nd cycle. My feet were so bad. They did peel after that cycle and the skin was coming off in sheets (yes gross i know) after that i got a 20% decrease and it helped massively. I thought i would never feel better but i feel very well now on cycle 4. My hand killed me on 2nd cycle too. Couldnt open drawers in my kitchen or cut things for cooking. It will pass.
I had to put trainers on if i needed to get up and go to loo in middle of night. You need good trainers/sketcher type shoes (i got cheap version in tesco for 15 quid) wear them much as you can out and about. I wead crocs in house too which help to wirh cream on my feet and let them breathe.
As awful as you feel now it will get better

[SarahLousie105]

Thanks Tatyana. Makes me feel a bit better. I am on the fouth type of nausea pill. None of them seem to make any difference. 

[tatyana]

Hi SarahLousie,
Sorry you've had a bad start with cape. I was lucky and only had very mild SEs. But if you look back through this thread, you'll see that a lot of people have seen a great improvement after their dose was reduced, so hopefully this will work for you. A 20 percent reduction is standard in the first instance, I think. Also some of the SEs, especially nausea, do get better of their own accord as your body adjusts. Have you got some anti nausea pills?
Best wishes for feeling better soon. Hang on in there!

[MissGreen]

Hi Sarah

I am on Capecitibane and have a few days left of cycle 6 but that's in conjunction with the evil Docetaxal. I have had awful hand & foot syndrome all the way through but mainly on my hands. They looked like they'd been scolded in hot water and then the skin would spilt. My chemo nurse gave me some cream which helped a bit but she also heard udder cream worked. Hope this helps.

Teresa
X

[george]

Hi Sarah

First of all, welcome ( not that you particularly want to be here, I know). Sorry to hear you are suffering with so many side effects. I have just finished cycle 13 after re- starting Cape last September, but I do remember feeling awful after my first cycle and, like you, I was very tired. It is only recently that I have had sore feet, but Udderley Smooth cream ( you can get it on Amazon) has helped enormously. In answer to your question, I had two dose reductions which helped a lot. I am now on 1,500 x2 a day. I have to say, after 13 cycles, I am not feeling too bad at all. My only worry now is that it will stop working for me; It has certainly been successful in getting rid of most of my liver mets.
Make the most of your week off and I am sure you will feel better after a dose reduction. Please feel free to ask any more questions if you have any, especially as there are lots of lovely ladies on this thread who will be happy to help.

George 🤗

[Carolyn52]

Hello Sarah

I'm not on cape but do dip into this thread to keep up to date with things. At the moment I'm on exmestance and everolimus ( my devil pills) but if after my next scan they are not working. .cape or vineoribine will be my next line of treatment.

I'm sorry you are struggling. ..all new treatment does cause problems but a lot of the ladies here do get a good quality of life once they settle down with the right dosage ..that seems to be the key to it.

Sending hugs and hope u feel better as time moves on ...

Xxxxx

[SarahLousie105]

HI

I have just finsihed my first cycle of Capecitabine. I have never felt so awful. I think I had all the side effects listed but the worst was the nausea and exptream tiredness. It was all I could do to go from bed to sofa. Now having had a few days off I am starting to get energy but I can't walk due to the massive fluid blisters.

My consultant has reduced the does by 20% but I am not confident that this will make enought difference. 

Has anyone experienced similar.

Thanks

Sarah

[JMP]

Hi Mulligans I’m completing cycle 6 of Capecitabine now been on it since early Feb 18.
My feet are pink underneath and have a burning sensation. My hands are dry all the time. I have found Cetraben moisturising cream on prescription good.
The Udderly Smooth Cream with 10% urea is not on prescription I believe (?) ( made in USA).
It absorbs very well on my feet. Main SE for me are extreme tiredness and insomnia.
Also have dry eyes and nose, and heartburn. I have prescription meds to deal with all these.
Judith xxx

[mulligans]

To the new people. I had a horrendous cycle 2 after breezing through no.1. My hands burnt and started to peel. My feet lost layers of skin. I ended up having to cut the peeling skin off with a medical scissors my nurse had given me. Dose was reduced on cycle 3. Feet and hands much better. Peeling has stopped too. Keep moisturizing your hsnds and feet. I must try the udderly cream!

Got scan results from 3 cycles of cape. Good news. It has cleared a lot of the multiple tumours in my liver. Bones stable too. Onc very happy. We continue on with cape. I didn't have a as good a result on abraxane but i suppose it depends what treatment works best. Im hoping this good luck continues on. Hoping to book a little sun holiday now the first scan is over!

[JMP]

Hi Tatyana,
Thank you for your reply. I don’t wake up in the early hours, the issue is getting to sleep initially. As my brain won’t switch off!
I’m 61yrs and thinking about retirement on medical grounds now. I used to work in London and had a 3 hrs daily commute on public transport. For that read a crap service with Southern Rail.
I’ve always had loads of energy until chemo. which is what I find so frustrating.
I did an 11 miles walk last Oct and now get out of breath going to the shops.
I don’t take afternoon naps as get up pretty late morning at present.
Though I’m trying to organise some activities per week so I have some kind of focus, other than day time TV with the cat on the sofa.
I make myself go out for a walk each day. Joined a keep fit group local authority yesterday evening to try to reduce BMI.
I also visit the local Macmillan Horizon Centre which offers support such as counselling ( invaluable) and complementary therapies.

Judith xx

[tatyana]

Hi jmp,
Oh I do feel for you with the insomnia. It's so tough when you are so tired yet can't get enough sleep. Do you find you wake up in the wee small hours and then can't get back to sleep for all the stuff buzzing around in your brain?
I find meditation tapes sometimes help, otherwise I give up and read my book, and I often have an afternoon nap, I'm lucky in that I'm not working now and can doze when I like!

[JMP]

Hi All,
I was given a sample of Udderly Smooth cream with 10% urea by the Chemo Nurse at Chemo Dept. It absorbs well. I’m getting towards end of cycle 6 of Cape. Main SE are chemo fatigue and insomnia:-/

[MaggieMac]

Hi pate1,

I have lung mets diagnosed Autumn 2016. At that time I had a really persistent cough - couldn't get through a sentence without coughing! My initial treatment was Letrozole and, after a few weeks, as the tumours shrank, the cough resolved. It has never returned.

Best wishes,

Maggie

[tatyana]

Teresa, I had the sore hands thing very badly with docetaxel, but only slightly on cape. I swear by the cow cream too!

[george]

Hi Pate

Welcome to the Cape thread. Sorry, can't help with your lung mets question as I have liver mets.Perhaps one of the other ladies might know more. Good luck with the treatment; it is one of the more manageable ones.
Have a good week

George 🤗

[george]

Hi Teresa, funny you should mention Udderley. Amazon van larrived today with a tub for me so will let you know how I get on. I have been using Flexitol, and have used Udderley in the past, so we will see. Feet are bright red. Hope, now you are on one chemo, your feet and hands will improve.
Have a good week

George 🤗

[MissGreen]

Hi George

My hands get red raw already and then split and flake. Hosptial gave me some cream which helps with the itching. They said udder cream (yep what milking cows have applied to their udders lol) can work too apparently. My feet just blister easily and the skin tears. That's on top of sore and blackened nails but I think that's the other chemo drug I am having. Chemo just likes to give doesn't it? 😉

I checked what dosage of Cape I am on amd it's 1800 x 2

[pate1]

Hi

I've just started on Cape a couple of days ago....interested to know if anyone had a bad cough due to mets in their lungs and if so did the Cape help. (My onc thinks that my lungs are being irritated by the mets there giving me a horrible cough. Have been prescribed liquid morphine which helps).

Keeping evrything crossed that the Cape works!

[george]

Hi Teresa

Just wanted to echo what others have said really. Cape is a very manageable drug which has enabled me to get on with life, just back from a lovely mini break in Madrid. 😊Through choice, I don't work but suspect it would be okay to do so depending on the nature of your work and the dose you are on. I struggled with the higher dose, but have been much better on 1,500 x 2. I am now on cycle 13 and have to admit hands and feet are becoming sore; however, I soldier on as we all do. Hopefully, you have a good employer who will make some allowances.
Mulligans, know how stressful waiting for results can be but, at the risk of sounding like Pollyanna, scans bring good news too. I find the waiting room part the worst, just sitting watching every time the onc's door opens and, as you said, it never gets any easier.
Hope you are all enjoying the lovely sunshine. 😎

George 🤗

[MissGreen]

Hi Tatyana

I am currently on both but it's so good to know cape shld be a walk in the park compared to Docetaxel. Thank you x

[tatyana]

Teresa, if you are currently on docetaxel, take it from me, there's absolutely no comparison between docetaxel and capecitabine! It will take a few weeks for the docetaxel side effects to wear off, but don't worry, once you've got that fiendish drug out of your system, cape will be a walk in the park! Not that there are any guarantees, but most people here seem to have tolerated it very well. I hope it works well for you!

[MissGreen]

Hi Paula and Tatyana

Your responses make me feel more confident if the Oncologist does just keep me on Cape and not the regime I am currently on that it will be more manageable. I hope so as by the time I finish cycle 6 I will have used up 3 mths sick on full pay. I have managed to work some days but not as many as i had hoped to. Just have to wait and see what the Onc says.

Thanks again

T