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Xeloda / Capecitabine - Your Top Tips, please?

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

Gail - It doesn't help us to make decisions when even the oncologists cannot agree, does it?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Pam - will keep my fingers crossed for your scan.
Ann - will mention your evidence to onc at next appt. It makes sense to me if it means you don't need a dose reduction. Could be different protocols apply here in Scotland. If she thought it was harmless I would just take the chance even if I couldn't get it on prescription but she's not keen on any supplements.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nina - I found various articles and forum posts but can't find all the specific ones. Here are a few that I have since found, which are from US sites, I think:-

http://community.breastcancer.org/forum/8/topic/705371
http://www.webmd.com/cancer/treating-bone-metastasis
http://www.ehow.com/about_5194950_breast-cancer-bone-metastasis-treatment.html

Gail - There seem to have been several trials for Pyridoxine with Xeloda, which show both that it does/doesn't help. However, it appears that the NHS recommend it, as I have found several NHS Trusts that publish this information:-

http://www.swshcn.nhs.uk/pdf/pdf05/folder05/PDF410.tmp.pdf

I also found this on the MacMillan website:-

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individualdrugs/Capecitabine.aspx#.UIK8Rq45C4o

Perhaps you may want to show your oncologist. My heels are definitely better since taking it, although I have just started getting a tingling in my left hand. Watch this space!

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

Hi pam , hope you are well , do you have bone mets only ? Just wondered as I have lung mets and I hope xeloda works for me as well as for you , take care x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I'm on cycle 12 of capcitabine ie 36 weeks. Only bone mets at present. MRI scans after cycle 3 and 7 showed no further progression after progressing on exsemestane. Next scan on thursday next. It has done very little to my markers but did stop the rising markers I was geting on hormones. Holding things is the next best thing to improvement. I'll let you know next scan results! Pamx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Onc has said no to B6 as she thinks there is no evidence of benefits and could interact with the chemo so will avoid it just now.
Hope it does work for bone mets. I don't (so far as I know) have any but seems to affect most of you.
Pinkylou - I expect the ache is just due to exercise if you've not done any for a while. I get a niggle in my hip now and then but it responds to stretches so I don't think it's significant and in any case I had it long before BC diagnosis.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you Ann - thats cheered me a little. I'd been thinking along the lines of LG that it might delay spread elsewhere, it's just I get so black sometimes - I suffer badly with clinical depression and have done for years, and while most of the time the pills and my mental 'training' hold me together, sometimes the 'old' me gets out and I struggle.
Can I ask - where did you find this? and please don't say 'google search!!
Nina
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I have just done some research and it appears that chemo can, and does, work for bone mets, depending on how well you respond to the drug, obviously. It doesn't repair the bone but presumably the bisphonates help with that, although it can take a few years for this to happen.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everybody , how are you all ? i just have finished cycle 4 of cap appt on Monday with oncologist. I have joined curves and working out everyday , I seem to have developed a bit of an aching hip since exercising which I haven't done for a while but if I ease off the exercise the ache eases off , I had a scan in July dis I am hoping if I had any back problems it would of showup up. I am going on holiday to Australia in 2 weeks as my dad lives there and thinking about back to work in dec / jan, I would love to know how you are all doing xxx
Lemongrove
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I've picked up on the post about Cap not being that helpful for bone mets, because I'm pretty sure it's not helping mine. I'm on day six of cycle two now, and the pain ifrom a met in my L5 vertebrae is getting worse (hurts quite a bit to get up, or when I turn over in bed, or swing a leg round to get out of bed). But in all honesty I don't think my Onc is that bothered about my bone mets, I think the reason he has given me Cap is because I have a met in the mediastinum (the area surrounding the lung). Funnily enough I do think it's working on the mediastinum met, because I was beginning to experience a tickly sensation on inhaling,, which has now gone (fingers crossed). I suspect they give Cap to people when the person has experienced progression while taking endoccrine therapy. Maybe they think that if C is on the move, they need to prevent/delay progression to more vital areas (could be wrong, but that seems likely).
Anyway, it's day six of my second cycle, and I think I've cracked the terrible heartburn problem. I now take an Omeprazole one hour before I take Cap (morning and evening), rather than after, and that helps a lot. Other than that, the only SE's so far are tiredness, a feeling of having gritty eyes, and constant runny nose.
Anyway, hope all are well. Would be nice to know if Marilf has got her kidney problem sorted out, and is back on Cap yet. also where has Belinda got to?

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

Ann - your liver and nodes will be benefiting so don't lose faith!!
I know some peo with just bones are on Cap - and I suspect then no hormones - but it's just I'm thinking forward (mistake!) and if the Cap doesn't work then onto next chemo, and if it has side effects and isn't going to do much good, shoudl I just continue with bone pills til it spreads elsewhere? It will be a question for the onc next month, but I'm just trying to find out how others fair so I'm slightly forewarned - my oncs can be a bit bombastic if you argue with them - or what they see as argue.
Nina
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nina - I didn't know that chemo wasn't much help for bone mets. How depressing! I have bone mets and some in the liver, plus some in nodes. I am on Pamidronate.

Some ladies with bone mets alone are on chemo, so what is the point if it doesn't help?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Chris - it wasn't my onc who refused the B6, it was the doctor on the chemo unit but she was maybe looking at the cost of it. You're probably right that the reduction in dose has helped you. I too get a runny nose, sorry haven't found anything to help with it. My eyes are OK but maybe it's because I already wear contact lenses during the day (although switch to glasses at night).
Ann - I've emailed my SBCN to check with her about B6 as I'm prepared to pay for it. I just don't want to use it unless onc says it's OK. I get a bit of blood but only on one side too. Not sure if it's related to low blood counts as I used to get this on previous chemo too and usually kicked in around the time my WBC was meant to be at it's lowest.
GrannyScouse - It does seem odd you haven't had a scan for so long. Sounds like you're getting good use out of the scooter.
Nina - Good luck with the bone scan.
Isobel - it does seem to be a matter of your onc's judgment with scans.
GrannyScouse
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Re: Xeloda / Capecitabine - Your Top Tips, please?

broomsticklady, you're onc's right. My onc also told me that chemo wasn't effective on bone mets. Are you on a bisphosphinate(?) such as Ibandronic Acid (Bondronat) for them? I also have bone mets in the hips, spine, ribs, sternum, plus liver mets (touch wood, doesn't seem to be a problem for me), plus such a runny nose that during the Olympics Granddad said I should enter my nose as it's running so fast!!! Runny eyes that sting also. Fatigue is the main se though 😞

Good luck to us all xx

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

This thread is so useful!!I'm on dose 11 of cycle 2, at reduced rate of 1950. Struggled with tiredness in cycle 1, hence reduction, but otherwsie - touch wood - reasonably OK. Still struggling with tiredness but last night nose started streaming and it's carrying on now. Thought I'd my husband's man flu he had last week but now I'm wondering!! Maybe I'm moaning at him unfairly!
Just posted on bone mets thread - they are all I have even if plenty of them - my lower spine up to mid thoracic completely infested plus hips, thigh, sternum ... Due for my cycle 3 bone scan - that seems to be my order of the day too - and panicing 'what next' is Cap isn't holding me. Gail - I know you're skin mets, and Isobel, I know you're boney too - what are the other ladies? My nagging thoughts are down to an onc telling me (a while before hormones failed me and I got Cap) that chemo wasn't particularly effective for bones.
Nina
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes Ann_04, I've had blood clots up my hooter! Only on one side though...strange. I've also had extreme sun sensitivity, which caused an itchy rash and has taken ages to fade. I wasn't warned about this.
Grannyscouse, I get scanned after the end of every third cycle. I'm surprised you've gone so long without one at all. Just shows how different all the approaches are to treatment. Who's right? What's more to the point...who's wrong?
Isobel
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Happy feet - I have problems with one thumb nail, one big toenail and a smaller one. They seems to be bruised underneath and lifting. I have just finished the 3rd cycle and they don't seem to be getting any worse but time will tell. How dreadful that you lost all of yours. I can't believe that a dose reduction wouldn't help. Perhaps it won't be as bad this time as you are only on one drug. Have you tried finger cots? They are like condoms but for the fingers!

Gail - It is strange how they won't give you B6. My onc volunteered it as soon as I said my heels hurt. They are ok now, so it may be worth buying your own B6. I was also given E45.

Steris - I get a runny nose but it is not all the time, a couple of times a day for an hour or two. I almost feel as if I have a cold coming. I have had runny eyes but also dry eyes and they seem to be becoming very light sensitive, as Skeski mentioned. I also seem to get some diarrhoea during my tablet-free week.

Nelson also make a Healing Cream containing calendula, which is very good.

Has anyone else had blood clots up the nose?

Glad you're enjoying your new-found freedom, Granny Scouse!
GrannyScouse
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies

I'm on cycle 7 after a 2-week break. I was sleeping/dozing for most of the day. \Onc reduced dose from 2500 x 2 to 2000 x 2 and although I've only been on this dose for one week, I already feel better. Side effects aren't so bad either. Got no diarrhea so far, whilst on cycle 6 I was on the loo up to 9 times a day and throughout the night. The tablets they gave me didn't help because I just had stomach cramps with them. Time will tell how this reduced dose goes ...

I asked Registrar about a scan and he said they wouldn't even consider it for some time to come. However, I'll argue this point when I next go, as I was in Eribulin for a short time and now Cap, and I haven't been scanned for a year so I want to know if all of this is working.

As it's in my bones and liver, I have problems walking and I just want to say that I finally admitted it and bought a mobility scooter. It's the best thing I've ever bought. When I finally gave in and ordered one (£319 from Lloyds Pharmacy, takes apart and fits in the car) I must admit that I felt like it probably feels when you stand up at the first AA meeting, except I more or less said I'm GrannyScouse and I'm disabled hehehe. We've managed a few short breaks to the coast and the places we've been to are certainly disabled-friendly, as are most people when they see me on the scooter. It's been fantastic taking the grandchildren to various parks and I can now get around with them, instead of finding the nearest bench and plonking myself on it with my book while they went off enjoying themselves.

Good luck to us all xx

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

Hi Ladies,

I haven't posted for a while - sorry to hear that some of you are struggling on Cap. I struggled for quite some time and ask to have two dose reduction which is always difficult. Cap now is very bearable and although I make sure my feet are well moisturised.

HF - I can't believe your oncologist has said that a reduction wouldn't make a difference. I had to have cap reduced after the second cycle as I couldn't walk it was that bad. It was like walking on hot coals and I would have rather stop completely than put up with that. The change was unbelievable. I went from 2,150 twice a day til 1650 x2. I still had some problems with my feet and asked my oncologist to reduce to 1500 x2. I still have a few minor problems but nothing like it was and the last scan I had show the disease was stable so its still working which is what we all want to achieve. My beds of Toes are still tender and I've lost my small toe nail.
Some of my other se is watery eyes but my optician said you can get contact lenses to help they are no way as bad when I was on tax but very irratating as there's no warning it just starts running. But my nose is the worse it starts and stop all day and I have a hanky with me at all times. I've ask is there anything I can do to alleviate the se but they said its a se ad something I'll have to put up with. Has anyone else had an luck with a suggestion to improve/control this? I would be gratefully if you have.

Gail - really don't understand why your oncologist won't give you B6 surely prevention is better than cure? I had pinky hands and my chemo nurse asked the oncologist no problem. I hope you get it sorted out seems very strange. But there no uniform treatment all the chemo units seem to give their patients different cream.meds while other done. I'm sure that depends on what area you live in. My unit does give out any creams but meds seem to be fine.

When my feet were flaky I asked my Reiki lady if there was anything I could do about them as I'd tried all sort of different creams. She suggested hypericum/candula from Helios. I moisturise in the morning and use this cream before I go to bed. My feet really do seem better although the main reason I think was the reduction but the chemo still causes se to my feet. I thought that is well worth a try.

Skeski - thank - you for your post it was really interesting reading.
Tae care
Love
Chris xxx


Sky

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

Thanks Gail - I've found it and will post on it to keep it 'alive'.
Broomsticklady - I was given Sodium Bicarbonate for mouth washes at the start of my treatment. I developed mouth ulcers during my second cycle, but I hadn't been using the mouthwash. So, on my third cycle, I started using it as a preventative measure halfway through and my mouth was much better. I still developed one small ulcer, but it healed very quickly.
Happyfeet - I've replied!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Isobel - There is a stable mabel thread under the inspiring news and stories section. Is that the one you're referring to? Hope you heal quickly and the reduced dose helps.

Nina - I was also given corsadyl on FEC-T, although they were getting a bit reluctant to give me it towards the end, but I felt it was keeping me free of mouth ulcers. I think they must have had some sort of review of what they were giving out while I was on that one as they also reduced the recommended dose of Domperidone as well. Probably cost-cutting. That's a pretty high dose they started you on. I can manage to stay awake when I get tired in the afternoon, but just because I worry I won't sleep at night. I do find it hard to get up in the morning though and sometimes only manage because I need to get up to take meds.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

A mixture of comments cos altho I read daily I don't have eth energy always to post.
Vit B6 - I've just bought some in Superdrug - it was 2 60s for £4.99, so will keep me going for a while. I asked the chemo nurse and was basically told yes you can take it but we don't give it out - domperidone, loperamide, uddereley fine, but not B6. I've decided to take it as a preventative.
Mouth washes - a bit older question this. when I had FECT I was given corsadyl. When I started Cap and they mentioned the mouth problems SE, they said they found eth alcohol irritated so were advocating saline washes as first line treatment, altho I will if need be use Dentyl which is alcohol free.
Me - now down from 2500 twice to 1950 twice after cycle 1. Not too many SEs, slight digestive but copeable, but the tiredness really caught me out in week 2. I finished the cycle with a couple of hour afternoon nap which I couldn't get up from, and when I mentioned to onc she immediately said reduce dose - the tiredness is cumulative and will get worse, so lets get it down now and catch it in the bud.
Now have bone scan scheduled mid Novemeber end cycle 3 to see if this poisoning is doing anything positive - hope so!!
Nina
Happyfeet
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for responding. Have sent you a pm

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

Happy feet, I haven't lost my nails, but the skin on my hands and feet has peeled off quite badly. So much so, that they have withheld the Capacitabine now, for two weeks. They will review me again next week and if my hands have healed sufficiently, I will restart on a lower dose. Other than that, I haven't really had any other side effects.
However, it must be working, because my scan shows that I'm a stable Mabel...whatever happened to that thread? It was on the old site, but seems to have disappeared, unless it's buried underneath all the posts, which are now repeated over and over again. Can't stand this new site. it's too cumbersome. Anyway, that's all. Hope you're are all well.
Isobel
Happyfeet
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for replying Gail5. Seems I am in a minority with losing my nails. Its agony

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

Happyfeet - Sorry I can't be of much help. I'm not having problems with my nails. The only dodgy bit is the last few millimetres at the top which grew when I was on Tax. Ann_04 mentioned a problem with here nails on the previous page and I think I might have come across someone else but that might have been on the US site.
Ann - I asked about B6 but they were reluctant to prescribe it until my hands get worse. Seems a bit bizarre as would think it might help stop them getting worse. My neuts just made it to 1.51 so OK for 6th cycle of chemo.
Happyfeet
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Can anyone here help? got no response from Cap ladies on bone mets thread, lots of people deserted the site due to all the mess it seems!
I am on my 14th cycle of Capecitabine (I have bone mets) and am starting to lose my nails again. I lost all my finger and toenails in 2009 when I went thru chemo and had Taxotere and Capecitabine as part of a trial. It made life very difficult. Oncologist just shrugs it off, says dose reduction would not help and only option would be to stop chemo. Presumably, my nails won't grow back this time if I continue with Capecitabine so has anyone else experienced this? Are there any specialist nail places who would be able to fit gel nails or something? Got plenty of help when the hair went AWOL last time but no help at all with the nails. I had to soak them in iodine, tape them down to stop them catching,wear latex gloves when cooking, washing, going to loo etc and cotton gloves in between. Thanks in advance. Best wishes to everyone x

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

gail - I don't see my GP. I just tell my onc if I have a problem. Hope your blood is ok for the next cycle. I know what you mean about the wait.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Ann - GP was reluctant to give me anything without approval from onc so will ask my chemo unit about it tomorrow.

Sykeski - that's some load of research there. Not having problems with my eyesight thankfully. Did at first but was due to be needing varifocals now. Also have new multifocal contact lenses which are great.

Chemo unit phoned today as neuts are a bit low at 1.45 and need to be 1.5 for chemo. So have to go in early to get blood tests redone. Charging up the kindle to keep me occupied for the long wait. Expect they'll be OK as almost there but it's the first cycle I've had a problem on. Feel OK so don't think there's any infection brewing.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nina and Gail - I was prescribed 50mg three times a day by my oncologist as soon as I mentioned sore heels.

Sykeski - Goodness, you do seem to be an expert at this. Do you think I have a fungal infection? One big toenail and one thumb nail seem to be lifting off and feel bruised but I am not sure if this is a SE left from the Erubicin that I was on previously.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I've been doing capecitabine since May 2012 and not just with this drug, but all, I usually get every side effect listed plus a few more! So a few tips to help out.
firstly, most chemos create yeast and many cancers live off sugar, so the first step is to cut out or cut down on yeast and sugar. So cut out the alcohol, vinegar, yeast breads (use sourdoughs), marmite, miso, and sugars. Ideally cut out melon and grapes and do more veg than fruit. You need to get your body as alkaline as possible.
To minimise the PPE (hand and foot syndrome) start using moisturiser on your feet and hands as soon as you start your chemo, Dont wait for the side effects to start. This will delay the onset considerably. Dont use anything with perfume in it and ideally paraben and petroleum free Moisturisers. Use cotton socks and gloves at night and if you are exercising, use chamois cream on your feet as this stops chaffing as the chaffing induces the PPE. If your feet do get to the point where they feel like they are burning, try aloe Vera. I have a big plant and sometimes use bandages with lint to poultice my feet with fresh aloe Vera. Vitamin B complex also reduces the PPE and this is great for you anyway as most breast cancer patients are short of B6 and B12!
If you do get toe fungus use tea tree oil at least 2 x a day and make sure it goes under the affected toe nail and all round the sides. You can get tea tree oil with a little brush for easy application. Wash your hands after touching nails or feet and clean your nail clippers or other instruments before using on other nails You need to be consistent with tea tree as if you stop it or miss a treatment it devalues its action. It is MUCH healthier than using pharma products. Cut the affected nail as low as possiblus and keep it short so you are reducing the fungal area as much as possible. Ideally boil your socks as regular washing doesn't tend to get the infection out of your socks- same goes if you have athletes foot or garments, boil tights or anything that touches the affected area. If you are feeling very diligent you can buy canestan washing liquid from overseas which helps ensure that you remove the infection from clothes. Very useful if you have vaginal or skin thrush!
when you are taking capecitabine, ensure it is with or after food. To reduce heart burn or tummy ache, chew food slowly and take tablets straight after. Have some ice cold water in the fridge and at the earliest signs of heart burn, drink a glass and this reduce or gets rid of heartburn - but it must be taken early and be ice cold!
get a number of specs of different strengths ( not prescription specs, the cheapies from the chemist) and use wrap round sunglasses when it's bright or windy. Again get varying degrees of darkness for your sunglasses. i advise this as your sight can change hour by hour, day by day and it reduces the watery ness by using sunglasses. You may also find that bright lights at night time eg car tail or headlights can hurt your eyes and reduce your ability to judge distance ashen driving but I have found that slightly tinted sunnies minimise this!
hope someone finds this useful!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Isobel - Good luck with you onc appt on Friday.
Val - I'm on 40mg Omeprazole. I think that's the max dose.
Pinkylou - might give the aloe vera a try on my feet. I think I have some left over from rads.
Ann - I must mention the B6 to my GP tomorrow. I'm slightly anaemic (HB count has dropped a few points each cycle) so will be tested for iron deficiency etc when I do my pre-chemo blood test. Hoping I can take supplements to avoid having a blood transfusion. I also have a problem with my nose running but not as severe as having a cold. Going through a few tissues each day though.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Ann - I'm not suffering with runny node but I am sneezing a lot, which I'm guessing is similar cause. I'm about to try anti histamines to see if that helps. Glad your heels are improving - what daily dose of B6 are you on - I might self medicate with that as a further preventative!!
I'm in my rest week of cycle 1, just had blood taken for cycle 2 to start thursday teatime hopefully, but at a 25% reduced rate. I found in week 2 I was really struggling to stay awake in eth afternoons, which when my previous 'baseline' day was only 10 - 12 hours losing some of it wasn't fun. Onc's immediate reaction was "tiredness is a common side effect and it will get worse so we'll cut you straight back to see if that helps" - hoping it does. Other than that cycle 1 has been OK - a slightly cantankerous 'derriere' on occasion but warning given and only twice daily for a couple of days and I didn't take Imodium as I'm paranoid about constipation!!
Nina
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I am finding the Vit B6 is a great help. My heels are ok now.

Does anyone have problems with a runny nose?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi , I have also tried pure aloe Vera on my hands and feet and it is very cooling x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Val, it's good to hear you are doing so well. I can manage indoors without a stick, but outside still need it. So, I'm slowly getting there.
I also find the meetings tricky. The 40 minute drive puts me off and by that time of the day, I don't really feel like it. That's what I get for living out in the sticks..sunny Dunny!
Sandwiches always taste nice if someone else makes them. It's usually me making them though!
Strictly is just about to start...I'm not going to watch, not going to watch, not going to...oh go on then...:)
Isobel
scottishlass
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Isobel, I had to have a reduction in my Capecitabine years ago when my feet were particulary bad it it felt like walking on broken glass and I was crying with the pain. I didn't know back than that they coud reduce the dose. Anyway I never looked back after that and my feet and hands are fine now and am back on it again.
I didn't make the WGH meeting either that night. I made the eveining meal and ended up shattered ans comatose flat on my back. I find the time a bit late for me too especially when on chemo and stamina by that time of day is failing.
I saw the surgeon yesterday re my check up after my hip replacement and he is really pleased that I have got as far as I have already. Which pleased me a lot. Today I dropped the men off for their long walk along the river Tweed and I jsy visited the butcher and spent a fortune but it is all in the fridge and freezer for thse days I do not want to go anywhere near a supermarket. I had a leisurly walk along the town of Peebles and looked in all the lovely shops but resisited buying anything today as nothing took my fancy. I didn't even buy any cookery books!
When I ordered the Uddrly Smooth cream recently form Amazon I also ordered a similar tub of their FOOT CREAM which is thicker but does not contain Urea. I use both, vary them each time and my feet are as good as they have been in a long long time.
I am still on the Steroids and they are encouraging my appitite and I am really enjoying food again. However they stop next week ( I am taking them on alternative days now) so am concerned my appitite will get bad again as I was losing weight and got down to 9 stone 7lbs which I haven't been for 30 years! Today my OH's pal made up sanwiches and he gave me my own goody bag too. He made a sandwich I wouldn't have thought of which was lovely plus a packet of crisps and a can of juice! The sandwich was a panini with ham and hummous and slices of vine tomoatos. It was absolute heaven yet not a filling I would have thought to try myself. Give it a go and tell me what you think!
Love to all on the Xeloda. It can be hard at times getting the balance right. Did you know Omeprazole comes in different mg. I was told to take mine with my first pain meds of the day and have no problems. I only take 10mg but before I was on a highter dose which I think was 20mg . Val

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

Ann, I've been using Udderly Smooth with Urea as that has been recommended by quite a few people on here. My side effects developed, midway during my third cycle. I have had my week off and they still don't seem any better. Having said that, I went for my Herceptin today, and was told that I had Grade 2 toxicity (there being 3 grades). So I am to stop the tablets for a week and I will be reassessed next Friday, when I just so happen to have an Oncology appointment. Gail, as you say, I was told that I might need a dose reduction.
Anyway, I hope it improves. I feel like a snake shedding its skin...yuk! So, back to the cream...!
Isobel
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Ann - that makes sense. I'm at the end of my 2nd week anyway, but will definitely be more inclined to stop the pills if it gets worse.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I was told to let the onc unit know as soon as any problems get bad. That way, the tablets may only have to be stopped for a short time. If it is not nipped in the bud, then a longer break would be required.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Isobel - I have a bit of soreness on hands but not too bad yet. Chemo unit told me to stop taking the pills and phone them if I suffered too much. You might need a reduction in your dose. I'm trying to soldier on until it gets worse as it's so far keeping me stable and would like a bit more improvement in skin mets before I have to reduce the dose. I have noticed that the week off is worse as well.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Isobel- I have always found Nelson's Healing Cream (Calendula) particularly good for anything sore. I know it wouldn't be any good for large areas as the tube is not that big and it would cost a fortune but can be helpful for a specific area.

Rubbing the skin with the inside of banana peel is supposed to help but I haven't tried it yet. Something to do with the enzyme in it.

During which cycle did your SEs get really bad?

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

My fingers are really sore and peeling. So are my feet and I've been putting lashings of that udderly stuff with urea on. A couple of my nail beds are extra sore. My hands feel like the skin is all stretched over them. I know this is a known side effect...but I don' t like it! Any ideas anyone? I'm also nearing the end of my week off (Friday). I would have thought it would have been better by now. So that's the end of my moan!
Isobel
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nina - good to hear from you again. I wasn't too bad after Gilles Centre but at least I live locally.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Ann - the favoured foot cream seems to be Udderley Smooth with urea - available on fleabay and Amazon tho worth asking your onc nurse about too - the sales rep in Aberdeen gives it to the ward - they don't always have it but usually do and it saves you a few pennies. I think th eurea seems to be the key - thats used in chiropody supplied foot stuff.
Nina
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nina - I did tell my onc yesterday and she gave me E45 and B6.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Jon - my heart goes out to you. We had similar 'drama' during my first primary chemo when my Hickman got infected. It gave me septicemia but I didn't know - just thought it was chemo reaction so refused to let Himself call quack as he wanted. He ended up 999ing, against my groans and moans, and if he hadn't I wouldn't be here now - temperature of 104 for 4 days paniced them a bit I think!!
Gail - interesting what you say about timing of Edinburgh sec evening - thats what puts me off coming down from Aberdeen - needs an overnight stay and I can't afford that!!
Ann - sore heels are an early warning of the sole / foot problems and I was told to contact onc ward ASAP.
LG - sorry you're struggling - you started about same time as me and I hate to say I'm coping reasonably apart from tiredness. I've struggled to get up to a 12 hour day up and awake and the last few days it's been harder and harder avoiding an afternoon nap. I do make sure I take my Cap on a full stomach - after last mouth full of meal and leave at least 8 hours between does - which with bone pills to cope with and my limited day ain't easy!! Tho my veins ar eso awful I'd do anything to avoid venous access. I think the 3 cycles initally is standard - I have that then a bone scan and CT scan - 2 assaults on the vein! - before cycle 4.
Val - so pleased to read elsewhere you're doing so well after hip
Isobel - sorry to Gilles Centre exhausted you - I must admit to be shattered a few days afer but it was good to meet you. As abov, not sure about evenings tho.
All else - if I page back I lose this - just done that once and had to retype - grrr - hope all goes as well as can be hoped.
Nina
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Jon - So sorry Kim has been having such a bad time and glad she's feeling a bit better now. Hope she can have the soup today and has as good a birthday as can be expected under the circumstances. I was told if I got a really bad reaction in the first few days I might be lacking an enzyme that's required for Cap to work. Has Kim's onc mentioned that or does she just need a lower dose? Hope she gets sorted out quickly and can either take a reduced dose or find a new treatment.
Lemongrove - I take Omeprazole late at night and first thing in the morning and it seems to help. Also Domperidone before the breakfast and evening meals. I take the tablets about 8:30 in the morning and 7:30 at night. It took me 3 cycles to find a regime that helped with the acid reflux and initially Omeprazole only helped a bit until I changed the times I was taking it, so might help to adjust your routine a bit.
Ann - My heels have started to get a bit sore on cycle 5 but nails are OK. Good you're fingers are a bit better.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi PinkyLou
It's not been the best couple of weeks at all. Kim had a one in I don't know how many reaction to the chemo and went into a real downward spiral. I had the on call docs and her gp out and the mac millan nurse called in and they all thought it was just normal but bad side effects and she'd pick up soon.
On thursday the 20th at about 4 in the morning she was going downhill so badly, despite her pleading with me not too, I rang 999 and she was rushed to Plymouth hospital where she stayed in intensive care for a week. We very very nearly lost her. She's out and in a ward now but will be in for another 10 days or so.
I don't want to scare anybody and thought hard before posting this but I think everyone who takes capcitabine should be made very aware that a bit of diarrhea might be normal but if it continous for too long (and I don't really know how long too long is) , get yourself to the hospital somehow. We're unlucky being over an hour from a hospital and not being off the loo for more than half an hour at a time makes it a very tough decision.
I think she's on the mend now, she's sitting out of bed and had her first liquid meal yesterday and the nutritionist is saying maybe some soup today which will be a bit of a birthday treat. She's fifty today.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

My fingertips do seem to be improving gradually, now that I am not handling the tablets.

I have develped painful heels and a painful big toenail and thumbnail. Anyone else had this?

Ann x