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Xeloda / Capecitabine - Your Top Tips, please?

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

Really good to see you back Carolyn. Glad cape is working for you.

Bon xx

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

Hiya Nicky
Thanks for the welcome back. .thought it about time I put my community champions hat on again and brought this thread back to a bit more active as I think cape is one of the most popular treatments for so many of us . There will be ladies reading and scared of starting them maybe. .I was petrified but can honestly say I feel so well on them.
Sorry Nicky to read that your lost your dad ..its always hard to loose a parent. ..we always think of them as immortal.
Last week my son got married and we had a fantastic weekend staying at the venue ...it was a landmark I didn't think I would make a few months ago. Next focus is the twins first birthday in a few weeks. ..
Well cape ladies. .hope you are coping as well with this regime as I am ..early days and no doubt I will be moaning about side effects soon but at the moment whoop whoop for cape !
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Re: Xeloda / Capecitabine - Your Top Tips, please?

How lovely to see you back on the forum, Carolyn, you have been missed - a lot! So pleased you are getting good results for Cape as well,  I do hope you managed to celebrate.

Nicky xx

ps I was about to PM you anyway but saw you had been on here already so that was a lovely surprise xx

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

Hello

Lots of the regulars will remember me taking a break from bone mets thread as I had scan results which were a bit scary and I felt the need to pull away for a while .. but I'm now joining you cape crusaders on this thread.
I'm on my 4th cycle of cape and weird but I feel really well on it ..in fact I hate the week off when I get tired and grouchy !!
I have been oiling my feet and hands twice a day. .no. probs and dreaded the trots but no probs. The only big thing I get is hunger. .I'm eating a meal and thinking of the next one! ! Ha ha.
I had a scan after 2 cycles which showe'd reduction and stability on lungs and liver which I was delighted with. It could take longer on the brain mets but holding out for results with that too.
So hoping all your other ladies coping as well. I'm on 1600 X2 a day dosage.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

New to this group, have been on cap since June. Was on a trial of ribo for 6 weeks that dried out my lungs and saved my life. Then developed liver problems so was taken off the trial. Cap has been tolerable except for painful fingertips and toes, and metallic tasting mouth. This week is up and down and I have another week to go. What comes after Cap?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Graceland girl .I've just joined the group and was interested in the fact that you've just started cape treatment.  I finished 5 cycles on it about 8 weeks ago and though I was really ill after the first one (dose needed lowered) after that  I stayed well.  Did buy into taking special honey to prevent nausea though.  My sister had heard about it on breakfast tv.  I've never coped well with the prescribed anti-sickness meds and the honey really worked for me.  I'm seeing my oncologist next week to see what effect the treatment has had and I'm keeping very positive about it.  Diagnosed with my secondaries March this year 5 years exactly after my initial cancer.  The battle continues!!!!

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

Hello Graceland Girl and welcome. Are you an Elvis fan.
I am also on my second cycle of Capecitabine. My dose is 2000 x 2 daily, Onc said he wanted me to start on a low dose because Cap can cause diarrhoea and I already have some gastrointestinal problems so didn’t want them to worsen. I seem to be doing okay- my platelets were a bit low after my first cycle, but they did another blood test and they had risen to an acceptable level so he prescribed the tablets.

I was first diagnosed in 2012, then just a few weeks later they found the secondaries - had almost five years on letrozole but then some progression in peritoneum. Tried E & E which didn’t work, then pacitaxetol which kept the TMs stable for the duration (16 weeks) but TMs went up straight after. Tamoxifen caused awful UTIs so am now on Cap.

Like you I find that my energy levels are lower but still manage to lead a fairly busy life and go for a walk most days. Glad you’re buying again, I was a little like that at initial Dx but we all find our new normal and I treat myself now..

Good luck with Cape- keep us informed

Take care

Best wishes to all the other Capers - as George puts it

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

Hello Graceland Girl
Sorry you find yourself here , I can’t believe your surgeons attitude ! Let me tell you I’m coming up to my 5 years in November- diagnosed with secondary from the outset . Bone and liver mets .The liver has cleared over the years ,unfortunately now in the lung. But still here and living life . Be kind to yourself and keeping buying ! X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Welcome though sorry you find yourself here. What a fab attitude you have especially in light of unwelcome prognosis from idiot onc,

Take care, wishing you a long time on cape.

xxx

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

I haven't used this forum before, so I hope Im using it correctly. I had intravenoue chemo for about 12 months but was taken off it due to my blood not recovering. I went on to tamoxifen but the TMs and scan showed it was no longer working, so I'm on Cap now. I'm on my 2nd cycle on max dose of 2300 x 2 daily. I don't feel too bad, just lacking energy and the sole of my foot feels very tender. Its very comforting reading other posts as I don't feel so alone in coping with incurable cancer. The saying "Living with Cancer" rather than "Dying from Cancer" is something that I think about every day. I don't think this disease has stopped me from doing anything I would normally do...except I dont do so much housework ! But I still enjoy cooking and eating, although I dont seem to be able to eat as much as I used to ! My original breast cancer was diagnosed in 2011 and I had a lumpectomy and radiotherapy. Although I continued to have mamagrams that were always ok, in 2016 after a visit to my GP she discovered  lump under my arm and after tests it was shown to have spread to my liver and was inoperable. The surgeon was very offhand when he gave me my diagnosis...with a shrug of his shoulders he said I had 2 to 4 years survival. That stayed in my mind and all I kept thinking was there was no point in buying new clothes or planning for anything as I probably wouldn't be around. I have since been told that I shouldn't have been given a time limit as no one knows and everyone is different....so now I've started buying again !   

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

Hi Lynn

Yes, Galway can be very wet. Fortunately, we were lucky with the weather. Off to Liverpool later today.😊
Thanks for update. Your treatment sounds very much like my own. I was on E&E for 3 months and had the worst side effects of all my treatments; it really didn't suit me at all. I then went on to Taxol, but had progression so went on to Tamoxifen for a few months which did give me leg pain. I have currently been on Cape for nearly 14 months and it has kept things stable although TMs are starting to rise slightly. Scan due this month so will see what that shows. 🙄
I too, initially, suffered with big D which did ease up after dose reduction. I am currently on 1,800 x2. At one point, my dose was reduced to 1,500 x 2 but onc increased dose after weight gain- I did try to blame chemo for that but onc was having none of it so need to look at real culprit-chocolate🤣My white blood count also fell during initial treatments; however, things seemed to have settled.
Good luck with cycle 2 and keep us posted.
Enjoy the rest of the weekend

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

 

Hello again - glad u had a good trip George, I’ve been to Galway twice and it poured with rain both times.  We found good places to eat both times and had lovely evenings though.

 

I started my cape three weeks ago and have just started my second cycle- the first one seemed to go okay, not much in the way of SEs.  Saw the Onc on Friday for my second cycle and he said that the bloods I had done showed low white blood platelets, he asked me if I would be willing to wait around at the hospital whilst they repeated the test, which I did and they had gone up enough so he gave me my second prescription.

 

Also gave me my scan result which was a bit daunting, it appears that the bone mets in my spine have infiltrated the bone marrow, which could be why the platelets were low, also the peritoneal mets are more apparant.  However he did say that this scan is a baseline to see how the cape affects things...I had it just as I was starting my first cycle and had not had any treatment for 6 - 7 weeks.  I was on Zomera and Letrozole for almost five years which reduced my TMs and also kept them stable.  Since then have tried E and E which had no effect.  Pacitaxetol which kept me stable for the 16 weeks duration but when I stopped my TMs increased dramatically- also tried Tamoxifen but the side effects were awful so I had to stop it.  

 

Yesterday morning I had awful diarrhoea but after taking a couple of imodium it has been okay since.  My eyes are a little sore, red and dry, but I understand that can be a SE as well.  Really hoping that I can get some stability with Cape

 

love to all, hope you’re all as well as you can be.

 

xx

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

Hi TB63

Had a lovely time in Galway although struggled to keep up with cousin on drinking score 😊It is a great city with a lively vibe. The latin part is full of bars, restaurants and independent shops. I also 'pretend' I don't have Sbc while on holiday so keep away from sites that might remind me ( Hope that doesn't sound too daft). Next jaunt is Liverpool on Sunday for few days, talking mum as a birthday treat. 😊
SEs remain the same and waiting for a CT scan date🙄Also, onc cancelled next app as he will be away so trying to sort another appointment with his secretary who is totally useless, no understanding of stress involved when routine is changed. Oh well, moan over.
Hope all well with you and other Capers. Have a great weekend 😊

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

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

Galway is beautiful! Love Ireland. x
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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
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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

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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
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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

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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

 

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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
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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
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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.

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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

 

 

 

 

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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

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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!
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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

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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

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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

 

 

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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. 

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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. 

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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
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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.

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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

 

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

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

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

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

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

 

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

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

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.

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

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

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

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

 

 

 

 

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

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

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

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

Bumping up for any new ladies reading.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

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

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

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

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

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

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

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

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