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Xeloda / Capecitabine - Your Top Tips, please?

jacqui37
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I am on my 7th Cap cycle and have had few problems, just rther loose bowels and a bit tire in the afternoons.
i eally only wanted to add a note to Marilyn's comments about the Hospice - mine has been fantastic. I was referred for some advice on pain relief when I couldn't get an app't with the onc for 4 weeks. It has been great. I have even been having weekly acupuncture for pain and hot flushes. Don't think if it as a place to go to die. I have made lots of friends there and we are all very much alive.
Jacqui

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

Hi Celia

Yes, I'm on exemestane as well as capecitabine & a tablet bisphosphonate (ibandronic acid) - very unusual to get an AI at the same time as chemo. My onc wouldn't do that now, but neither of us wants me to stop either the exemestane or the capecitabine, in case we stop the wrong one! "If it ain't broke, don't fix it" seems to be his mantra.

Most oncs that we hear about will prescribe either an AI or a chemo, keeping the other as another "lifeline" for if/when the current treatment ceases to be effective. I had tamoxifen for five years after my primary BC treatment (lumpectomy, CMF chemo & rads), then Arimidex when I was dx with bone & liver secondaries, changed to exemestane about 6 years ago - my BC is very ER+++.

I haven't seen any info about the impact of being on capecitabine (or my other treatments) long-term - some of us are true "pioneers", or "guinea-pigs" depending on your take on it. My onc has taken me off capecitabine & my bisphosphonate for a few weeks because I've become quite anaemic, and he thinks this is a result of my now poor kidney function - failing to excrete something vital triggering my bone marrow to make red blood cells. While the key cause of my kidney problem is diabetes, he's concerned that these two drugs might also be having a detrimental effect on my kidneys. Isn't it all so complicated?!?

My onc is based at the Christie Hospital in Manchester, a specialist regional cancer hospital with satellite clinics in various surrounding towns. I believe this means there is less liklihood of my being refused treatments than if I was being seen at a non-specialist hospital, but there still seem to be significant post-code lottery problems for us in accessing our treatments throughout the UK.

Hope the "peachy pills" work well for you!

xx
celiab
Member

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

Hello
Am now halfway through second cycle and fingers crossed no bad side effects yet. Hope you don't mind Marilyn but was just intrigued by your last post - are you having hormone treatment alongide being on capecitabine? I'm interested because I had a variable response to an AI before starting this and we wondered about having it alongside it.
Also interested in whether people have had to fight to stay on capecitabine beyond 6-8 cycles. In my area it seems to be treated like a chemo like tax or FEC and given for a short number of cycles and then people are taken off it (esp those with liver probs). Obviously don't know if it is working yet (!) but if it does then am greatly inspired by the lengths of time people seem to have been taking it.
Thanks
Celia

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

Hi Foxy

First of all, sorry to hear your Mum is having treatment for secondaries, but welcome to you (and her) to the "capecitabine club". I've been on this treatment for over 8 years, since my liver & bone met dx, but am having a few weeks break right now (nothing to do with BC or the usual SEs). Along with a bone strengthener and a hormonal treatment, it's kept me stable and pain-free for far longer than originally thought possible. I am very lucky.

I wonder if your Mum might already be seeing a podiatrist - I was referred to our NHS podiatry service following my diabetes dx some years ago, and it's been very helpful in managing the impact of capecitabine on my feet. I would definitely recommend that she tries to get referred either via her GP, or perhaps at her local hospice?

Which brings me to that word that sometimes makes some of us rather distressed and anxious: hospice. While all hospices are quite individual in the way they're structured and the services & support they offer, the one consistent factor is that they're there for us: people with life-limiting illness, especially those of us whose health and/or treatments have a major impact on our lives. I can't speak highly enough of the wonderful support my partner and I were offered by our local hospice when I was first dx with secondaries. I was able to regularly see a doctor through their out-patients service, have some much-appreciated complementary therapies, and get support & advice from a specialist lymphoedema nurse and an occupational therapist at the hospice. And my partner was given a very sensitively provided tour of the in-patient facilities . . . to reassure her about what might be available to us "later".

Most hospices also offer day sessions, which include a range of activities, the opportunity for private chats and other therapeutic services - and a nice lunch. This type of support is usually targetted at people living on their own coping with the impact of life-limiting illness and its treatments, and to those needing regular respite so their carers get a bit of a break. It occurs to me that your Mum might really benefit from this type of service, reducing her isolation, giving her a social outlet in a caring environment and dealing with any worries she (and you & your brother) may have as she embarks on this new treatment regime. Do please discuss it with her, and see what she thinks - I know a lot of people think hospice = death, but that's really not the case. In fact, hospice = good quality of life, which is what we want most in our situation.

I do hope that this treatment treats your Mum kindly, and that it works as well for her as it has for many of us here on the forums - please don't hesitate to ask any other questions you might have - so many of us now have an "A-level equivalent" in living with capecitabine!

Marilyn x
Foxy
Member

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

Hi Laurie
Thanks for the advice, I'm full of admiration that you are working full time as well and hope the Cap is working for you. This thread has been so useful as I was able to ask the right questions and clarify some things my Mum was told. She's been given 2000mg twice daily so I guess there is some room for reduction in the dose if the SEs are bad. Then round by the chemist on the way home to get E45 as recommended by them for her hands and feet, but I might order some Udderly off Amazon and get it delivered to her. Typing this while waiting for the inevitable "can you just remind me...." phonecall!
Thanks again
xxxxx

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

Hi Foxy
Im on my second cycle and so far few SE's
Some bloating after meals and random diarrhoea both manageable by eating smaller meals (I get full up much more quickly) and I have Lomotil on standby though it's not been so bad that I have to take any.
Some hard skin on my feet but have been putting on Udderly with urea in the morning and evening. I jusy use a regular moisturiser on my hands and they seem to be OK
Occasional leg cramps at night despite my blood work being OK. I just grit my teeth and get through them.
Not feeling any more tired than usual but have had a couple of stinkers of migraines which may be linked to X, hormones or brain mets who knows??? My tinnitus has got a lot worse at night so sleeping with the radio on.
Having said all that, I'm still managing to work full time
Hope things are going well for you both.
Laurie x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

im currently on my 6th cycle of cap. Ive had very few problems with side effects and specifically have not had probs with hair loss. I decided to risk dying my hair and have done so 3 times since on chemo. Twice during the week off and once whilst taking cap all with no probs. I use the non permanent nice and easy....it says it lasts for about 24 washes..in practice for me it acts as permanent. I think there may be individual factors involved ....you may need to try it on a small area for a short period first. Best wishes Pamx
Foxy
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Evening lovely Xeloda princesses
I wouldn't normally post on this thread not having had chemo myself (mx, rads and letrozole, now abandoned but that's another story) but I'm taking my 87 year old mother to her cap consent clinic tomorrow so I was wondering if I could join this thead as proxy. I can't do much practically to help her as I live a distance away and have other not BC related health issues at the moment, but I was wondering what if anything I could do best to support her. She has regional recurrances in her axila and collar bone, and possible lung mets following a grade 3 DX, mx and clearance two years ago. She's ER neg but HER positive. She was offered 18 weekly cycles of Tax but her BCN and I thought that was mad as she has very fragile skin, angina and digestive problems and quite frankly we don't think she'd survive it. She will, however, be getting herceptin if her heart is otherwise OK. She has been prescribed amitriptyline for pain control for the tumours pressing on the brachial nerve, but it's the S/Es from cap that we'll need to deal with. I can probably manage to visit her once every two weeks, and my brother the same. Apart from that she is alone. Any advice?
xxxxx

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

Hi Janice,
I have had my hair coloured at a salon using an organic colour Schwarzkopf 'Essensity', 90% organic ingredients. I have only just started cap and having it coloured again tomorrow so will let you know if I have any problems but my hairdresser says it is fine to use during tablet chemo, she has had chemo herself so she should know!! So fingers crossed.
Having lost my hair twice through previous chemos, my hair feels very important to me now, it helps me feel more normal and although I havent got much hair, it makes me happy when my hair looks good 🙂

xx
Janice
Member

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

I have been taking this for 12 months now, for the first few months I did 2 weeks on and 1 off but I had a few problems and I now have 2 weeks on and 2 weeks off and it still seems to be doing the trick. I have just come back from a holiday in Mallorca and got insurance through MIA they would only cover for Europe excluding Greece for some reason and I had to have proof from my oncologist that I was fit to travel, it cost £56.
Just wondered has anyone coloured their hair while taking this, mine has thinned very slightly, think its only me that notices and seems to have got grayer lately. Not that important I know but just thought I would ask.

Jan

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

Hi Debbie,
I have just finished my first 2 weeks of cap and s/e's started about day 7, mainly extreme tiredness, then sore throat, cough and cold and I have still got cold now. Although I wonder if this is has all come from a virus I may have caught. My feet are sore today but I am now on my week off so hopefully my feet will have time to recover. No diarrhoea or sickness but I have been careful to take tablets straight after a meal and I think this has helped. I have been keeping s/e diary which I think is very useful.
Hi Mildred1602 - I get travel insurance through MIA online, Although I went to usa in April and didnt bother with insurance as it was all very last minute!! Thank goodness I was fine and I wasnt on chemo at the time. I just make sure I take anti biotics with me and pain killers, anti sickness and upset tummy tabs and enough money for quick flight home!! lol, prob not the best idea but I am living in the moment and taking every opportunity that comes my way! Mia online are good they covered me for a trip to Asia and Australia 3years ago.
Hi everyone thanks for your info and help. Going for radiotherapy planning next week so should find out more then.

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

Hi all
I'm starting on capecitabne tomorrow and was wondering how long until the side effects begin.
Thanks
Debbie x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Ingrid - I worked full-time in a regeneration partnership team for four years after my bone & liver mets dx in 2003 while on Capecitabine. Then, at the end of my contract, I took early retirement - because I could! I was pretty tired by then (I've been on Capecitabine for over 8 years), and hadn't wanted to retire three years before I was 60, but I'm glad I did that now, as it's meant I've been able to spend more time with my partner, who also retired at about the same time.

You'll need to see how you react to Capecitabine before making any firm decisions about working - each of us has such an individual response to our BC and treatments. But it can be much more "gentle" than many of the IV chemos we might get - and you should keep your hair!

Hope it works well for you and is kind.

As for travel insurance for a trip to the States, I couldn't get any last year, but I have extensive bone mets and more than one liver met, not to mention quite a number of health problems (high blood pressure, neuropathy, retinopathy) resulting from diabetes. So, on paper, I look v. ill indeed - in person, I'm pretty ordinary! Hope you enjoy your holiday!

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

Hi Rachel just to say I had rads to spine when first diagnosed with spine mets in feb 2011. I suspect s/es appart from general tiredness and skin redness depends on which part of spine radiated. Anyway i had 5 days of rads focused on T4 which was collapsed. i had very few s/es but did notice I was a little hoarse for a day or two. Lower down I think bowel symptoms may be an issue but many people have just a one off dose of radiotherapy which is even less likely to give symptoms. Pamx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks guys, its helpful to know that others are suffering similar symptoms. I think it may be a cold virus that I have picked up. Its slowly clearing up but now on my chest. Taking it easy but finding it very difficult to slow down. But my feet are starting to feel sore so that will slow me down!!
Anyone had rads to their spine? My onc is recomending rads for my pain but not sure re after effects? I have had rads before, breast and sternum so I know about skin and tiredness but scared re mobility problems. Meant to be voluteering for olympics but not looking too promising at the moment!!!
Rach x
Mildred1602
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Everyone

Told today that bone mets had spread to ribs & hips (spine only before) & they want to try me on capecitabine (hormones for last 6moths). Have browsed through the thread & have an idea of what or what not I might be in for.

I have a few questions:
1) Has anybody managed to work while on this treatment? I'm currently working full time except for the trips to hospital. There are days when I just crash out in the evening but life goes on relatively normally.
2) Has anyone managed to get travel insurance? We already have a 16 day trip to New York / Canada booked (money put aside for big premium). Insurecancer seem a possibility but would want ok on blood counts before issuing certificate which they'd want done at last minute which is a bit scary! Oncologist was absolutely fine about it & said doing paperwork was not an issue.

Cheers in advance

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

Hi Rachel,
I have had a sore throat a couple of times since I started the chemo and my nose has periods where it constantly runs. I'm on anitbiotics at the moment because I felt so awlfu on fridayl and my throat when completely went that morning so I just phoned GP and he wrote out a prescription for me. I spent the morning in bed as I couldn't even get out of bed. My chemo nurse said the running nose is normal and I suppose our bodies are getting a bit of a hidding from the chemo, but my bloods have always been fine.

Great news Whizz on your results, makes all the se worthwhile and long may it last for one and all.

Marilyn I hope you're enjoying your 5 weeks of freedom and it allows your body to recover from the se's. I'm on cycle 8 and my oncologist isn't happy with me doing anymore cycles. I'm pretty scared of coming off Xeloda; if its working why change the treatment regime? I know we did discuss the maintenance dose but she isn't keen and wants me to have Fasolodex injections. I'll put another thread up to see if I can get anymore info.

Take care ladies

love Chris xx

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

Hi all,

Rachel, sorry you are feeling so wiped out. I'm managing ok energy wise, but definitely need much more sleep than I used to - up to 10 hours a night sometimes. I used to worry about it, but now try to just go with it - if thats what my body need then so be it. I'm sorry about your throat and cough too - have no experience of that as a side effect, so hope it is something you have picked up and will soon shake off. You could mention the extreme tiredness to your onc next time and see if they might consider reducing your dose?

Alesta, you brought memories of cramp flooding back. It is horrible when it happens, and I remember it seeming to go on for ages. The good news, which will hoepfully be true for you too, is that it gradually reduces to the point where I had almost forgotten about it, until your post. Having said that, last night: cramp again! Maybe it was on my mind, or maybe just a coincidence!

Enjoying a lovely (well compared to recently anyway) day here - out for Sunday lunch with Mum, brother and son, and have even summoned the energy to pull a few weeds in the garden.

Best wishes to everyone,
Jx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all,
So 2nd week of first cycle and I am exhausted, I have never felt this tired before!
Also my throat feels red raw and I have developed a cough, anyone else had these symtoms? or have I just picked up a cold virus? I rang hospital but nobody seemed too interested as I dont seem to have a temp!
Having spent most of the week in bed or on sofa I am feeling very frustrated.
Any advise please?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Great news Whizz - relief to get such good news, now if only the weather would perk up you could have an even better weekend!
Hope your tootsie recover on your chemo break Marilyn and you get around to doing some of the stuff you maybe haven't had the energy for.
Anybody else had leg cramps as a SE? I'm on the tail end of the week off on cycle 1 and the last couple of night have woken up with the type of spasmodic cramp that make you go OWWWW!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all,

Pretty sure I posted here a couple of hours ago, but seems to have been swallowed - hope it went down easier than the peachy pills sometimes do!

My excellent news is that the scan results today show NO CHANGE! Such a relief: I've been feeling really well, probably the best I have been since my original diagnosis in June 2008 and mets diagnosis in 2010, but even so was apprehensive about todays appontment. So, onwards with the pills, and long may they continue to do their job 🙂

Hope your break is helping, Marilyn - I really enjoyed my fortnight off a few weeks ago, just to get out of the dreaded pill routine as well as allowing feet to recover. Hope your feet are improving Sam too.

Best wishes to all,
J xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi from your Xeloda Queen

Yes, I've had a few Xeloda-breaks during my 8+ years on the peachy pills - am having a 5-week break now, but nothing to do with usual side effects or even BC - kidneys affected by Type II diabetes, contributing to anaemia, so onc took me off Xeloda & Ibandronic Acid (tablet bisphosphonate) to reduce impact and hope for improvement. Swings & roundabouts, girls. Everything is affected by everything else.

Actually I'm quite enjoying my chemo-break - a bit more energy and feet are improving!

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

Hi Racheal,

Welcome to the Xeloda club. I had to have a 25% reduction because my feet and hands were so bad anf I couldn'twalk on the second cycle. I'm on 1650 twice a day and on my 8th cycle.

I had a dufferent se every months so did know what to expect. I had a month's break after cycle 5 to go on holiday and seem to be a lot better after that break. I know our Xeloda Queen saud she has had breaks over the 8 years she had been on it and it has been benefical. Please correct me if I'm wrong Marilyn and Belinda hasn't had a break since she started. Excellant news Belinda and long may it last.
I hope the se are kind to you Racheal and I hope your feet are behaving themselves Val.

Take care ladies and what a lovely day we've had down in Kent it stayed dry until about 16.45 which was lovely for all the Jubliee celebrations.

Love
Chris xx

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

Missed this thread somhow. Know many of you though!
I have just finished round 5 of Capecitabine and am on a reduced dose from previous cycles of it. I had a free period of 2 and a half years without the drug but tumour markers rose to over 3000 and I wasn't feeling great.
I have had 2 periods of being on Capecitabine before. My feet are being slobbered in cream. I believe it is better now to rub the cream in too vigorously as it can cause the capilleries in the blood to leak and that causes the sore feet. The first time I was on it my feet were so bad it felt like I was walking on broken glass and it made my cry. I always put lots of cream on at night and wear loose cotton socks to allow the cream to absorbe while I am in bed. The first time I was on Xeloda I did everything wrong and wore boot type slippeers and they were soft on the soles of my feet. But I read it is better to keep them cool and comfortable sandals are the answer. I am wearing my Birkenstocks today but sometimes I wera shoes and socks if it cold. I have another undrlying problem. My Mum has Renaulds disease and I think I have inherited it too. In the hot weather I get freezing cold hands and feet. So it is difficult to keep comfortable at times. Bare feet are good sometimes too.
My hands become worse on the taking pills day and improve on the week off. I put micropore over the cuts at the side of my nails and wear disposable gloves when doing the garden chores or cleaning the sink/bath. I have one more cyle before I see my Oncologist at beginning of July. But I would say I am doing quite well on this reduced dose. She did hint that I may remain on this dose forever now. Will wait and see. But just wanted to point out than you can be on this drug, have a break, and then restart it again if needed. Love to all, Val

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

Hi Rachel, I'm on 1800mg now as 2000mg was too much, ended up sleeping through most of the dose, day and night & then unable to walk through the second dose! I was first diagnosed at 33 too in 2008 then secondaries at Christmas 2010. This is also my 3rd round!
Well was trundling along nicely on this round with just having a couple of naps a day and tiredness and then wow, last night my skin is coming off my feet again and the familiar burning is back. Have covered the open sores and holding out tight as I finish chemo tomorrow eve, praying it stays OK, its half term!!!
Happy Jubilee to all, looking forward to the flypast this afternoon
Sam x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Sam and everyone else! I was 37 when I first joined but about to be 41 on tuesday!!
I have started on 1800mg twice aday, no major se's yet.
I was first diagnosed in 2004 aged 33, then secondaries came in 2009, This is my 3rd chemo.
This thread is great, loads of useful info, thanks everyone.
Rachel
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi, hope everyone is feeling OK. Excellent news for you Belinda, also welcome to Rachel, I am going to take a wild guess here, are you aged 37?? If so great, thats my age too.

Wishing everyone a lovely and well Julbilee
Sam x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Great news Belinda!!! Have a wonderful stable summer!
Laurie x
belinda
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good Luck to all. I've just received another 'all stable' CT result. I've been on Capecitabine since April 2008.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

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

Hi, I have just taken my first dose of capecitabine! Thank you for all the tips and hints on here. It has helped me prepare for today. Fingers crossed the se's are minimal as I have only just started to recover from doxetaxol.
I have spinal and pelvic mets that are causing so much pain so I am hoping this chemo will help relieve this discomfort. Any advice is most welcome xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi, I have just taken my first dose of capecitabine! Thank you for all the tips and hints on here. It has helped me prepare for today. Fingers crossed the se's are minimal as I have only just started to recover from doxetaxol.
I have spinal and pelvic mets that are causing so much pain so I am hoping this chemo will help relieve this discomfort. Any advice is most welcome xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Apologies, just read that back and lots of spelling mistakes, sore bloomin fingers!!!! Me now off to bed!

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

Oh Laurie, the colours they come in, well I borrowed Crocs from my friend in the Mary Jane style, liked them so much until it came to ordering them and realsied that they were doscontinued. Managed to find some in a store online in the Isle Of Wight and they have arrived in Berry!! My god, they are so bright, definatly an indoor shoe! Going to buy some nicer ones in a month or so when some more moeny in a more eye friendly shade.

LOL at the cotton gloves, I also wear them when driving as the school run is 10 miles away, Luckily me and a friend car share so we only do the journey once a day, all the children keep calling me Michael Jackson!

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

Hi Sam and fellow Princesses.
I bought the Udderly off Amazon and have only been creaming twice per day. Have taken to wearing cotton gloves when I'm out and especially when driving to reduce friction. Gets a few strange looks - maybe I should just wear a Michael Jackson t-shirt to match!
Worried that I am having little or now SE's but then when I end up with SE's I worry about those - can't win huh! Suppose I should know by now that crummy SE's are not an indicator of success, having failed on FEC, TAX and Tamoxifen!
Was in London today and went to the natural shoe store in Covnt Garden, hoping to treat myself to something other than Crocs but nothing else came close comfort wise so it's back to the unenviable choice of lurid mint green or candy cotton pink!
Laurie x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Laurie - How are you feeling? Do yiou get Udderley on prescription, I have read on here that some people can but we can't here and I ordered it from Amazon, I know its a bit pricey but if you're in agony and it lasts ages you don't mind. LOL at you in your summer dress, socks and crocs. Love the way socks and crocs rhyme but don't go together!!

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

Bellasman - Good tips you have given, will try to follow them. Have certain aims and have written down a list of all the fun things /places we are going to go to this summer with the children. Is the hand/foot thing something that your body gets used too and then clears up??

Jane 75 - Thak you for reminding me about the sun, I haven't been old anything about sunburn although I do add suncream as I'm fair and was slightly reddish in my hair. I have forgotten most of the things I was told about chemo first time round as my last dose was iearly 2009.

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

Hi Everyone, sorry I haven't been on for a while, was a bit down, my bloods were low, not low enough to not have chemo on Weds but my hands were still a bit of a state and was put on anitibiotics for an infection in my toe last Tues. They decided to lower my dose to 1800mg twice daily and for 12 days from 1800 x 2 (14 days) and to delay the start until Sat to give time for the anitibiotics to work. Pleased to report, so far so good, spent Sat kept nodding off and was dreading Sunday as hubby working all weekend and from 7am til 8pm on Sunday but it was all good and me and the children had a lovely day, was tired but not exhausted and there is a difference,

My hands are still very sore and peeling well but not bleeding or open sores at the moment and I'm hoping this will stay like it or improve but who knows!! Had a fantastic day last Tues, my friends arranged a lovely lunch for me followed by a make over and a photo shoot and I will get to pick up the 4 photos I chose tomorrow, I'm so pleased with them, was a lovely day after sitting in my doctors open surgery for an hour and a half waiting to get my sores seen and to get anitibiotics. Was a lovely day and didn't want it to end. Was sitting here at 11pm , everyone was in bed but I didn't want to take my make up off!!

Chris - Hope your scan went well today, when do you find out the results?

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

Can I just say, dont sit out in the sun unless you use lots of protection and even then be very careful. I have been told by my Macmillan nurse that chemotherapy makes your skin photo sensitive and more likely to burn, and even more so if you are on Capecitabine. Get yourself a high factor suncream and a hat and sit in the shade.
I was on holiday in Crete last week (and it wasnt as hot as here) and with all my efforts to avoid getting burnt, I managed to burn my face, even with high factor sun cream, sunglasses and a hat. Didnt burn anywhere else, except my face. This happened on day 3 of my holiday and after that I spent the rest of the week sat under a tree praying for the redness to go before I got home.
Have got Onc clinic this week and didnt want to turn up with a red face, after being specificly told to keep out of the sun. xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Just to let everyone know I too am on capecitabine. This is now my 18th cycle and only had hand foot syndrome and a salty taste in mouth the first 3 cycles. It then cleared up. The worst thing one can do is steep your feet. Just wash and dry as per usual, use a pumice stone very gently and use calmurid cream which is far superior to anything else. It's free from your GP. It contains lactic acid and urea which draw moisture into the skin. Try to not let your hands/feet get too warm. Use plenty of olive oil for your dry cuticles. Vitamin D3 is good for keeping bones strong and there is strong evidence that it also boosts the immune system. Try to reduce salt and certainly reduce sugary foods to improve health. There is also strong evidence that shows sugary foods may assist in tumour proliferation.

Many ladies complain of fatigue/tiredness, tight muscles in legs etc. this can easily be resolved by some gentle exercise using light hand weights, and getting moving i.e walking, swimming, cycling or whatever you fancy. Sitting around will only make you feel sluggish and lethargic. If you are unable to get out and about, try to sit in the sun, get some fresh air unless you are really feeling rotten. Exercise and a good diet containing plenty of protein (be sensible) helps repair cells and helps keep lymphodaema at bay and increases energy levels.

Last year I was on deaths door due to portal hypertension/jaundice/ascites and lymphodaema. I had 18 litres of fluid removed...then another 10 litres.....eeeek!
I was in a wheelchair for weeks and was unable to sleep in a normal bed due to all the swelling. Now, I ride my horse, walk my dogs and regularly walk 8-10 miles with my walking club.
I think the key here is to research all you can, ask your onc pertinent questions and get into a positive frame of mind and have a focus or small goal to aim for. Yes it can be hard, but we ladies are made of strong stuff.....!
I wish you all lots of cyber love and prayers

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

Mrs Blue - re taxol: I started taking Capecitabine in July 2011, and at the same time started on three weekly Abraxane, which is another taxane, although supposedly a more gentle one as it is "protein-bound" i.e. delivered with albumen. I continued with this for 8 cycles before going on to Capecitabine alone.

I also had the horrid nails although they now seem to be growing out. I'm on a similar dose to you - 1,300 twice daly, but I take mine every day with no breaks. Having said that, my feet were pretty bad a few weeks ago, so I did have a 13 day break to allow them to recover a bit.

I don't seem to be suffering from hair thinning - I lost my hair with the abraxane but it is growing in quite thickly - thicker than I remember after taxotere 3 years ago (and not curly this time, thank goodness!).

However, I do have peripheral neuropathy in my feet resulting in tingly, slightly numb sensations in my toes, and am not sure if this is an after effect of the abraxane or resulting from the Capecitabine. I seem to remember Susie V mentioning it as a capecitabine problem - anyone else have any experience?

And re Crocs - I actually find the bobbles on the soles too much for my poor feet! I'm reduced to wearing Fitflps and Birkenstocks, or boots with thick socks. Find it very depressing looking at my wardrobe full of shoes which I cannot wear....

Best wishes to all,
Julie xx
mrsblue
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Skirt and socks, yep tell me about it... my husband shudders. Too bad, he's not on Xeloda!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Well I know I'm only on the first week of cycle 1 (day 5 - 1500mg / 1650mg) but I feel pretty OK. Oops - tempting fate with a statement like that! Doesn't feel like chemo apart from the horrible mouth, crusty nose and tingling feet.
Slathering on the Udderly and trying to look sophisticated in a summer dress with ankle socks and Crocs but think it looks more like mutton dressed as... LOL!
mrsblue
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi to all, esp those who are new to the peachy pills and all the delights in store for fingers and feet (and a few tummies and other places too). Good to see this thread active again - I stumbled on it when checking the Secondaries subforums.
"Week off" thread is here:
http://www.breastcancercare.org.uk/community/forums/xeloda-week?page=6#comment-2029506
I'm now on cycle 19 (1150 mg twice daily, one week on, one week off) and doing generally well. But to be honest, my worst problem is my fingernails. They grow extremely slowly, are badly curved, and there is hardened gunge under most of the nails (the medical term is "subungual hyperkeratosis" apparently) EXCEPT for one thumbnail which can pass for normal. I think it's because I went straight on to capecitabine while still suffering from taxol toxicity. Were any of you on taxol or taxotere/docetaxel immediately before starting Xeloda?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone, hope you are all well, Celiab - hope you are Ok on the peachys and not having too many side effects, my hands and feet are still not healed, went onto antibiotics on Weds as infection in my big toe, hands are still extremely sore and skin come off my finger tips so quite painful, very annoying as busting to do some cross stitch but can't. My chemo has been delayed from weds until tomorrow and lowered to 1800 because of the sores and it was stopped 2 days early so in total I've got 12 days off. Silly hands & feet, very annoying as I so want to stay on this chemo and at the recommended doses.

While I'm on here, can anyone remember the surname of Tammy, cancer fundraiser who has been in the news a lot over previous years and ran/took part in several marathans during her illness. She unfortunalty passed away a couple of years ago but my daughters homework is on someone inspiring & I can't for the life of me remember her name. I have set up a seperate thread but it is not appearing under latest posts and its not a well used thread so not holding out much hope for an answer on it.

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

Hello I haven't really posted on these forums much before so don't know if this will work... I'm starting xeloda on Monday (have had various IV chemo and hormones) and wanted to say thank you very much for all the info on this thread it has been very useful and encouraging! fingers crossed..... Cx

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

Hi all
GrannyS
I have been thinking just like you. Have been diagnosed with secondary lung cancer Dec 2011, 3 x taxotare which didnt shrink tumour so now on 2nd lot of cap and xeloda. I found it initially so hard to swallow those huge peach tablets knowing that they were going to make me feel sh.. , it didnt make sense. Normally you take pills to feel better!! I could spend 30 mins just looking at them. Also I struggled to eat anything but apparently you need to have something in your stomache with these tabs which didnt help as I had to force feed myself aswell. Now my onc has cut my 2nd lot by 20% and it hasnt been too bad. Lost all my hair again with tax but whispers in the sunlight now appearing, maybe I will need to shampoo again afterall xx Chris x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Everyone
Well Sam you do seem to be suffering with the se's especially the red feet and hands .I am on day 6 of cycle 2 and am so far doing ok. I even managed to go away last week - twice, and the second time i was walking up hills in Ilfracombe and Woolacombe with my daughter and the fact I was unfit was the only problem, although the pasties and cream teas helped enormously!
It seems everyone has different side effects on this drug, and i have found it is better to try and stop a side effect before it kicks in too much and becomes unmanageable.My onc and clinical nurse who gives me my dosage are both brilliant and listen to every moan I have when I go to the hospital. They have changed my mouthwash to difflan which is more for infections and is stronger, so i have started taking that once a day just to be on the safe side.
Hope all are coping this week
Anne xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Aww sam how awful for you I'm lucky to only have the red ness at moe so unf Wldnt know wat to advise all I'm doing is putting loads cream on I think they wrap them in bandages to help healing wat as onc said I'm surprised they not stopped for a bit tc laura
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Everyone
Well still very sore here and getting slightly irritated now by the constant pain. Am very glad though that I stopped the peaches 2 days early as later on during Mon eve my hands started to crack open. Numerous open sore on them and wearing gloves constanty to avoid infection but lots of things I'm unable to do such as open up my fingers, open things, hold things etc. My children have been brilliant and seem to be excited by the fact that I need help bless them, running to open the cereal packets in the morns, doing up my buttons, squeezing the toothpaste out, even pressing the remote button on the car keys seems to cause bleeding. I have today ordered Udderley Smooth as keep reading about it on here and have even paid £8 for guaranteed del before 1pm on Sat as am now getting desperate. Good news though is that the feet have healed up nicely.
Hope everyone is well
Sam x