Xeloda / Capecitabine - Your Top Tips, please?

[Guest user]

Hi everyone, just a quick hello...I'm Amanda, aged 47 with 2 teens & hubby. Had primary BC over 8 years ago (chemo, 2 x mastx, radio). A few weeks back found lump under arm (on same side as original cancer)...the cancer was back. I start Capecitabine tomorrow. Rather nervous as I did not deal with chemo at all well the first time round. Ax

[Guest user]

Hi jo welcome to our thread I'm on my 3rd cycle and tbh apart from the big d on my last day of tabs I'm fine but I'm only on xeloda my onc not mentioned anything else my scan is march 6th so hoping for gd news be intreasting to see if anyone else is tn like us with gd results it's a hard and scarey journey feal free to pm me if u want to hugs Laura

[Guest user]

Hi all
I've joined you on capecitabine. Very worried as 4 th line chemo. Have completed 3 full cycles but returns towards end. I'm to have avastin too. Has this any se ? Are any of you triple negative as so encouraged by longer times as feeling so low I'm again not to have a chemO break. I know Laura is triple negative from our other thread.
Is it best to start creaming right away.
I was told doesnt cause hair so dissapointed as still thin from
Taxol which ended 18 weeks ago
Jo x

[mrsblue]

Hair, yes indeed - having lost my hair twice on previous chemos, it's good that capecitabine is kind to hair but tough on cancer cells. Thankful to pay my hairdresser last Monday, after a "normal" cut and blowdry, and to book another appointment... 🙂

[Janice]

I have almost finished my 9h cycle now and have been using Aveeno moisturiser for Extra Dry skin, so far my hands and feet are not too bad. Hands are dry but always are at this time of year, looks like I have been in the bath too long, around my nails are the worst.

I wondered about hair colouring as well, mine has thinned slightly and seems to have got greyer (I am 64) but like Angelfalls says I would rather have grey hair than no hair.

Jan

[Guest user]

For feet I use Aquadrate cream (which is prescibed by my GP), and P.U.V.A. 2 cream (from the chemo dept at the hospital) plus coconut oil (from exotic food shops) on my hands. You can sometimes get coconut oil from places like Boots, but it's much more expensive.
Love, Lynn

[Guest user]

Hi there,
Just on my 5th cycle of Xeloda amd the SEs are not too bad apart from my poor tootsies............I have alway smothered them in cream, last and first thing I do before bedtime, but they are cracking up with a vengance. I have a prescribed some emoliant, which I am trying now and have on order some udderly cream, so hoping things will improve.

I have also noticed that my hair is thinning, quite rapidly, I was lucky not to lose it during FEC as I had the 'cold cap' for 4 of the cycles.

Any help and tips from people with grotty feet would be very welcome 🐵

Clare xxx

[belinda]

Hi Chris, I have slightly darker skin now, I had to go a shade darker with my make-up. My grandmother was Italian so I have black hair but I used to have a relatively pale skin. I've also noticed my lips are rosier..so I think I look more healthy. 🙂 I also have more freckles, always had some and some darker spots on torso. Strangely my usually straight hair went curly while I was on hormonal tablets but has straightend out again and is thicker on this chemo...but I know others whose hair has thinned.
I'd be interested to hear how you find the cream. And have a lovely time in your new dress. 🙂 x
Hi Angelfalls...not sure about the hair dye but would think the gentler ones available now might be okay? x

[Angelfalls]

Hello Chris,
I've read a number of posts on an American website where women talk about having to change their foundation to one a couple of shades darker as a result of taking Cape, so looks like it's one of the SEs. I'm still milk bottle / pale grey so far, so I'll look forward to getting that one! ;0)
My hair seems to be OK, but I know that hair thinning can be one of the SEs and on that point, I have a question: What about dyeing our hair? I really need to book an appt. with my hairdresser (nice change from the onc!!!), and am wondering whether to get my roots and grey coloured but I don't want to do anything that might contribute to thinning hair. Vain and petty in the overall scheme of things and when so many of you are going through so much, I know, but I'd appreciate some info, please.
Have a great weekend everyone. And enjoy that party, Chris!! Hugs, Angelfalls xx

[Steris]

Hi Ladies,

Wow Belinda thats great news and long may it continue. I always think of Marilyn you're both something to aspire to.

Just to pick your brains I have noticed that my skin is changing colour. I'm the original milk bottle. My daughter came home for the first time since Christmas and she said it looks like I've been on holiday. I also asked the girl who does my legs and she says I don't look as pale. I think Marilyn said she has had something similiar any thoughts?

Love to you all and good luck with all those nail biting scans - I've just started my 4th cycle tonight just looking at my poor hands. The chemo nurse gave me some udderly cram in a tube apparently they get free samples. I'm seeing the GP next week to see if they can prescribed a cream called avena (sp?) which I'd like to try. Will let you know the outcome.

Anyone having hair thinning problems mine is very thick but have noticed how thin it's getting luckily no one else has.

Take care and have a great weekend - hoping for no snow as I brought a lovely dress to wear to my friends 40th tomorrow night.

Love
Chris xx

[belinda]

Thanks ladies..good luck to you all..x
Hi Esha..hope the IV works wonders for you without too many side effects..x

[Esha_Ness]

Hi Belinda
I havent deserted you even though I am now on IV chemo for the first time.Great news about CAP response.
Esha

[Guest user]

Congratulations Belinda.....Great news for all of us Xeloda girls.

Sue xx

[Angelfalls]

Belinda,
That's so good to hear! Congratulations on your best CT yet - brilliant news and so encouraging for the rest of us! I've just heard I've got my first CT since starting Cap on 29th Feb, which will be my first day off of cycle 3. Then a week's wait for those all important results to determine the next step... I really hope I'll be following you to many years of great results with Cap. Fingers crossed for all of us!
Angelfalls xx

[belinda]

Oh that's great news Chris! So pleased for you.
My latest CT, in January gave me my best results yet, after nearly 4 years of this chemo...Good Luck to all..x

[Guest user]

Hi Jane 75 it's a bit of both sometimes just cramps sometimes runs as well but with cap it's a known thing of both they can alter doseage if ness unsure about temp though as mine as been ok at moe have u started yet I'm on my 2nd cycle no se at moe gd luck Laura

[Guest user]

Hi girls, these cramps you talk about, are they just stomach cramps or do you get the runs with them, or does it vary?
Just been to the Dr's this am, as keeping spiking temps, up around 38 C, and they dont seem to know whats causing them, so had 6 bottles of blood collected and sent off for every test known to man I think. Hope this doesnt delay the start of my Cap.
Love to you all and hope the weather is improving. xxxxx

[Angelfalls]

Welcome to the club, Jane! Hope the drugs will be gentle on you, but tough on your cancer. Let us know how you get on.
Chris - Sorry you've been hit by the cramps and hope you've had a better day today. Must be easier to put up with the SEs now you know the drugs are doing the trick, though, eh? ;0)
The snow didn't last long here. Even though it snowed non-stop all day yesterday, the rain arrived in the evening and washed most of it away before I'd even mustered enough energy to step outside... In fact, it's been so cold and I've felt so knackered I've barely left the sofa since Wednesday. Pathetic! Must get off my backside and go for a walk tomorrow before I start growing roots!!!
Have a good week, Angelfalls xx

[Guest user]

Hi all hope u are doing ok 4th day of 2 nd dose all ok at moe cramps mainly but only on eve tab weird hope y all ok and enjoying the snow we have a little but not enough to make a snowman lol tc Laura

[Steris]

Hi Angelfalls,

Thanks for your good wishes was doing really well apart from foot/hands problems. The dreaded cramps hit me last night so spent most of the night up and down. In the end I gave up and had the tabs the chemo nurse had prescribed for me.

The snow here is awful and we live on a hill so doesn't look we'll be going out anytime soon.

Jane good luck with the cap - all the se are doable but I hoped you don't have the hand/feet problems as the really are hard. I had a reduce dose and prescribed B6 so they are lots of things to help you.

Take care ladiea and keep warm.
Love
Chris xxxx

[Guest user]

I've just read this thread with great interest. Just found out I'm going on this chemo and have my teaching session next Friday. Think I will get my Udderly cream in, just in case.
Love Jane

[Angelfalls]

Yay!!! Loving your good news, Chris! Have a great weekend and a wonderful time in NY, you lucky lady!!! Can we all come with you? Any room in your suitcase?!! Take care xx

[Steris]

Hi Ladies,

Just to let you know Cap is working horrraayy -its reduce the fluid in my lung and the fissures are slightly reducing. Lumps and bumps which they can't find on CT scan have also gone down. My oncologist is a bit confusing as to what to do because as she says if your can see em you can't treat them. She thinks it may be in the muscle but can't confirm it. If its stable she doesn't want to do anything which sounds sensible to me.

I'm having a break after the 5th cycle to go to NY and she said she will probably put me on a hormone whilst I'm away and them resume after I come back.

It's so good to have good news for a change I must admit that I was fretting after all those SE'a but I can cope with them now I know its working.

Take care ladies and I hope you all have a super weekend.

Love
Chris xxxxx

[Steris]

Hi Angelfalls,

Thanks fo your good wishes - I feel a lot better since the reduction. Obviously a little worried about scan as call scanaxiety which is so apt.

I'll let you know how I get on will hear next Thursday.

Hope everything's going well with your treatment and the se are kind to you.

Love
Chris xx

[Angelfalls]

Good luck for the scan, Chris. Fingers and everything else crossed for you. Do you have to wait long for the results? Glad to hear your SEs are subsiding and hope the reduced dose will help get things back in check for you. Take care xx

[Steris]

Hi Ladies,

I've had irritating se effects mainly on my hand/feet. On cycle three now and oncologist has reduced my dose by 25% on day four now and not too bad I brought some flexiol from Tesco as my hands started to peel and blister. Its seems to be working plus with dose reduction should help. The cramping I experience has subsided as well so things are looking up.

Putting lots of udderly and E45 on my feel which feel ok no signs of peel and blistering so fingers cross.

I've got my scan tomorrow to see if its working. Usual feeling hoping and praying.....

I hope everyone's coping with Cap and sre minimal.

Take care
Love
Chris xx

[mrsblue]

Link to an oldish thread about moisturisers:
http://share.breastcancercare.org.uk/forum/moisturisers-when-on-capecitabine-xeloda--t30295.html

[Angelfalls]

Hello Laura, I've sent you a PM. Good luck for tomorrow! xx

[Guest user]

Hi all well I've picked my tabs up gona start tomorrow bit nervous about se even though might be minor hope you are all ok kp in touch Laura

[Angelfalls]

Thanks, Esha. This is good to know. Today is Day 4 of my first cycle and so far, so good...! Take care, Angelfalls xx

[Esha_Ness]

Hi Angelfalls
I have been on CAP for 10 months now. I have the udderly smooth cream prescribed by the hospital. I also use VIT E oil to rub into hands and feet. I see a chiropodist and have Relexology to give my feet some positive attention,.I sometimes soak my feet in hot water with oils and Epsom salts. I wear comfortable shoes and boots. I buy fabric plasters and padding to put on my feet when sore.Birkenstocks in summer and good flat thick soled boots in winter.
I wear sunglasses in the summer as my eyes are very sensitive to light. I always have a hanky on me as my eyes and nose are often streaming when I am outside.

Side effects vary from one day to the next and sometimes I have none. .
I think CAP is a very livable with Chemo. It doesnt stop me doing what I want to do. I really dont think anybody else would notice I was having these side effects and they are intermittent. People say how well I am looking ! Best of luck and it is usual to have your dose adjusted if need be. Esha

[Angelfalls]

Thanks again, Mrs Blue and Marilyn, for your great advice. This really is so helpful.
Take care and stay well, Angelfalls xx

[Guest user]

A few more top tips:

- If you have a bad reaction (i.e. bad side effects) with your initial dosage, ask your onc to lower the dose, to see if that makes it easier for you. Usually, the side effects are in direct proportion to the amount of the dose (but not always . . . chemo is full of surprises!)
- Vitamin B6 is helpful for some of us - the recommended dose is 50mg x three times a day, but you can try less, to see if it works at all for you.
- If you manage to go somewhere which is hot & sunny, use a high factor sun cream - I notice I go mahogany these days in the sun, which is very different from my younger years (freckles & sunburn), so I think capecitabine might make our skin more "receptive" to the sun.
- See if you can get a referral to your local podiatry (chiropodist in old money) team, to get someone to keep an eye on your feet, especially your toenails; I've had loads of little infections in the corners of mine over the years - not too painful or serious, but yucky enough to want some help. Some of us bathe our feet in diluted antiseptic liquid (e.g. Savlon) to try to avoid these.
- Keep in touch with all of us - we "Xeloda Queens" have pretty much an "A-Level Equivalent" amount of knowledge about life with capecitabine.

Marilyn x

[mrsblue]

Kit list for newbie capecitabiners !!

ESSENTIALS
Moisturising cream for feet/hands. Maybe your onc can prescribe? Otherwise I recommend a tube of E45 (or Diprobase, if you can bear the slight odour). Udderly Smooth Extra Care with urea - available online from the S.American river retail site 😉 - is even better but pricey.

Probably, Imodium or generic loperamide, and an anti-nausea med such as metoclopramide. Oh, and a mouthwash... These should be available on prescription. We can't tell what there will be in the way of side effects - "be prepared" as the Scouts say.

ADVISABLE
A couple of pairs of socks for night-time use after creaming feet. I have cotton socks from Body Shop.

Digital thermometer in case of fever/infection... capecitabine is a chemo treatment after all..

Diary to keep a record of side effects... and to plan holidays and treat days during the "week off" or when SEs are minimal.

Over to others, what have I forgotten?

[Guest user]

Hi all I'm starting xeloda wed morn just wondered if i need to know anything in advance regarding se any tips or anything I need to buy any info be great laura

[belinda]

Bumping this thread up for Laura.

[Angelfalls]

Thank you so much, Jan, Nicky and Belinda, for sharing your practical tips. This is exactly the kind of thing I was after. I hope you all continue to get good results from this treatment for a long time to come and that the SE's remain minimal for you. Best wishes for the new year, Angelfalls xxx

[belinda]

Hi, I've been on continuous 3 weekly cycles of this chemo since April 2008.
My tips 🙂
Moisturise hands and feet before you get any side effects. And swap your creams around every now and then. I use Udderly Smooth, Udderly Smooth with Urea, (both available from Amazon) Eucerin and I have used Flexitol but it's very greasy.
I've been lucky not to have any digestive issues other than when I'm feeling constipated I make a curry..when feeling the opposite I eat something stodgy.
I have had more moles, freckles appear...I've sometimes had cracked heels (silver plasters heal cracks faster) but nearly 4 years on I feel well. I have no tiredness, no hair loss and will be very sad to say goodbye to this chemo when it's stopped being effective for me.
Good Luck...x

[Guest user]

Hi Angelfalls

I am one of the lucky ones who seems to be coping very well with Xeloda and there are lots of us. The first cycle I had quite a few annoying, uncomfortable side effects, but nothing that stopped me functioning normally. I had uncomfortable indigestion, loss of appetite, no diarrhea (but a bit softer than usual)and ulcers on my lips.

But since then I have been very lucky, my feet can sometimes get dry and sore (but this month are soft and smooth!!!) and I seem to have developed strange brown dark pigmentation spots. But it isn't as if I'm on chemo at all.

I think one thing I've learnt after reading huge amounts of info about Xeloda is that SEs are unpredictable and can't be anticipated - each month appears to differ and in my case fortunately each month appears easier than the last. Actually the only SE that seems to concern the oncologist (but I don't feel the effects of!) is I often have to delay treatment for a weak because of poor blood counts, but you will be checked for that before each treatment anyway.

Hope you get on OK with this chemo, it can be very kind and many of us lead normal lives, often continuing to work, without any problems,

Any questions do post them or PM me xx

[Janice]

Just fetched what will be my eighth cycle this morning, side effects are not too bad most of the time. Find I get very tired and don't have much engery. I have had very little nausea, I was told that severe diarrhea is a side effect but I haven't had that problem. I think my hair has thinned slightly but not noticeable, its gone very fine.

You will be told about all the side effects but you may not get any of them. I found I got blotches on my hands and face during my first couple of cycles and sore eyes, but I've started wearing gloves when I take them and that seems to have sorted that out.

Good luck and let us know how you get on, if you want to know anything else just ask.

Best wishes

Jan

[Angelfalls]

Hello,
This time next week I'll be going for my education session on how to take Xeloda, ready to start treatment the following day. So I thought it would be really useful to hear from those of you who are actually taking this drug, as I'm sure you have all kinds of invaluable practical advice on dealing with SE's that the pharmacy won't necessarily be telling me or even know about...
I know there are already Xeloda threads, but if we can get some practical advice all in one place, I feel it would be helpful for those of us just about to begin treatment.
Thank you all so much for your help with this,
Angelfalls xx