Member
Posts: 9
Registered: ‎30-09-2018

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

Galway is beautiful! Love Ireland. x
Member
Posts: 328
Registered: ‎28-01-2016

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

Hi TB63,

Chocoholics of the world unite😂Yes, do keep in touch and let us know how you are getting on. Always interesting to know how other countries do things.

Have a good weekend. I am off to Galway to visit family. Don't think I will be needing any sun cream 😏

George x
Member
Posts: 9
Registered: ‎30-09-2018

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

Hey George!  Sympathise with the weight gain!  I'm up 16 kgs since going on Xeloda but am told it's my sweet tooth, too, that is the cause!  Stay well and I will keep in touch. x

Member
Posts: 328
Registered: ‎28-01-2016

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

Hi TB,
Thanks for your reply. Good to hear Cape worked so well for you. I am sure ribo will too. Not sure of exchange rate, but it sounds expensive which is probably why there is limited access here. I have been on varying doses of Cape, ranging from 1500, twice a day up to 2,150 when I first started. The full dose was too much for me so reduced it. I am currently on 1,800 twice a day, a slight increase from earlier dose as I have put on weight-would like to blame chemo, but think it is down to my love of chocolate and cakes 🤣
Good to hear your SEs seem to have eased up.

George x
Member
Posts: 9
Registered: ‎30-09-2018

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

Hey George, how are you?  I live in Australia so maybe the funding is different for ribo.  We did have to get a special authority to get it.  Glad u have heard good things about ribo - not much to read out there as it is quite new.  Xeloda worked very well for me for a long time - TM going up slightly after 18 months of Xeloda keeping them at the same level - but not enough to alarm the onco at the time.  It's the mets to the omentum that came this year that's prompted the intro of ribo.  I'm now taking ribo with letrozole plus xeloda. Onco had originally said you usually have letrozole with ribo but not if u are on any oother chemo so not sure why he has said to also stay on xeloda.  TM had increased at the visit 2 weeks ago (but had slowed down).  This was xeloda and letrozole.  We introduced ribo a week ago so in 8 weeks I will get an indication if it's doing anything.  The sore feet and hands is a side effect of xeloda - I didn't get that - but keep moisturising as it helps.  I asked the onco at the last visit if we could increase dosage of xeloda as I tolerated it so well.  He said no because that brings on SE with hands and feet.  I am taking 1500 mg of xeloda twice per day.  What is your dosage? x

Member
Posts: 9
Registered: ‎30-09-2018

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

Hi JanieB, the complex world of breast cancer!  I didn't have lobular bc to start with - it has always obeen oestrogen receptive.  When the mets came in the omentum earlier this year I asked my onco if it was a common area of spread (i.e. the omentum) he said no, but associated with lobular.  This takes me back to a convo I had with another colleague here in Australia (I live in Aus but am British - been here 32 years) and she was very much into the science of bc - she had it herself.  She explained that as bc metastasises the pathology can morph, meaning change.  So I am assuming mine has gone from oestrogen receptive to also lobular.  Capecitibaine (Xeloda) worked really well for me - 6 months of it gave me 18 months of stability.  The rbiociclib (also known as Kisquale) is pretty new.  I've just read another comment on here about funding in the UK - I needed special authority for it here in Aus - took a week - otherwise it's normally AUD $5,500 for a box ...  The SE in the first few days meant fatigue but this week not too bad.  I am taking it with Letrozole now.  Up to this year I was on Cape and Tamoxifen.  When the omentum got involved they changed the Tamox to Letrozole.  I was told Letrozole is usually taken with Ribociclib but if you are on other chemo you can't take ribociclib.  So not sure why 2 weeks ago the onco put me on the ribo with letrozole AND continuing on with Xeloda.  At the last visit 2 weeks ago (before introduction of ribo) I was on Xeloda and letrozole and the markers had increased (but slowed down from the last test) so I think onco is hoping ribociclib will bring them down and keep the omentum stable.  Hope you are doing ok, too!  It's a hell of a journey, isn't it? x

 

Member
Posts: 51
Registered: ‎18-01-2017

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

Hi TB 63, Do you have Lobular BC? I have just started Letrozole alone but don’t feel it has started working after a month. My mets are to various membranes incl omentum. Have tried Paclitaxel, Eribulin and Cape but haven’t heard of ribococlib
Hope it’s working for you
Jane x
Member
Posts: 328
Registered: ‎28-01-2016

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

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
Member
Posts: 9
Registered: ‎30-09-2018

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

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.

Member
Posts: 609
Registered: ‎10-10-2012

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

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

 

 

 

 

Member
Posts: 32
Registered: ‎11-05-2018

Re: Caceptibine

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

Member
Posts: 763
Registered: ‎30-05-2017

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

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!
Community Champion
Posts: 4,507
Registered: ‎01-05-2012

Re: Caceptibine

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

Member
Posts: 74
Registered: ‎28-06-2013

Re: Caceptibine

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

Member
Posts: 609
Registered: ‎10-10-2012

Re: Caceptibine

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

 

 

Member
Posts: 32
Registered: ‎11-05-2018

Caceptibine

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. 

Member
Posts: 32
Registered: ‎11-05-2018

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

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. 

Member
Posts: 51
Registered: ‎18-01-2017

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

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
Community Champion
Posts: 4,507
Registered: ‎01-05-2012

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

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.

Member
Posts: 609
Registered: ‎10-10-2012

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

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