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Xeloda / Capecitabine - Your Top Tips, please?

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

Good Morning All,
This is such a useful chat, I also had hot painful feet and lifting big toenails! My onc decided to drop me down from 1800 to 1150 which i thought was too low having read that others have been reduced to 1500. protested and they eventually agreed to go to 1500. So nearly through this cycle and feet are so much better. It just shows though that it’s worth being a bit more informed! Spring has arrived on the west coast of Scotland, heard first cuckoo and the swallows arrived today. Doing my yoga in the ☀️ hugs to you all🐝
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you for sharing Sweep. It is great to hear how well you are doing on cape. Gives me hope with these liver mets that have appeared.
George also good to here the lower dose is treating you well. I had my feet on ice this evening. They feel a lot better and now full covered in aveeno with socks on. Best of luck with the results on tuesday George. Lets hope for stable or better!
Hope everyone is doing well

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

Evening Sweep

I am normally size 12. If I dont shift the weight charity shop is. going to be very. Though I have got a daughter who would probably have some of them

Makes you wonder what is the tablets to make us gain alot of weight in a relatively short space of time.

When I started cape in October nobody.mentioned it can be one of the side effects. I googled it seemly 5% of people have problem with weight gain.

Suppose in one respect I am 65 I never really had to diet so I am to find it hard plus with these tablets you have always got to eat something. I am just going to have to starve myself on the week that I am off tablets.

What dose are you on?

Linda

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

HI Tatyana

 

I have read so many other posts since 2016 and gained great comfort and now suddenly it just feels like time to join in and encourage others. 

 

Must work out how you add lovely flowers to the post! 

 

Sweep

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

HI Lyndyloo

 

Yes my break was only going to be a trial 6 weeks which kept getting extended as my bloods just got better and better! I think it was a bit of a mystery to my onc!

 

I just can't shift any weight and have summer clothes in 3 sizes! ( which I keep just in case there's a breakthrough) but I do know it's a very small price to pay for improved health. 

 

Sweep

 

 

 

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

Evening sweep

That's great news long may it continue. It must have been nice to a 20 week break from tablets.

I have found the same as yiu I have gained over half a stone since October last year. Normally me as a person contain weight. Even if I go on a fully inclusive holiday for a fortnight I tend to gain just a couple of pounds. Normally it is hubby that tends to put weight easily. Bummer. Plus side I am still here.

Linda

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

Evening George

Good luck with scan results.

Have a good weekend.

Linda

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

Sweep, that is just brilliant and so encouraging, thank you!🌷🌷
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Re: Xeloda / Capecitabine - Your Top Tips, please?

George, best of luck with scan results, it's such an anxious time!
Mulligans, I don't have any input about liver Mets, but I'll join in the chorus of Moisturize, moisturize, moisturize for your hands and feet! I had very bad hands on docetaxel and was expecting the same on cape. First cycle was ok, second cycle I got very dry flaky hands. The oncologist and breast nurse ganged up on me and insisted I need to moisturize much more than I already was. I took their advice and it's working, my feet and hands have been much better on cycles three and four. Slather the stuff on your feet at least twice a day and just sit letting it soak in for a few minutes before you put your socks on; don't rub, just slosh it on gently. Same for hands, use loads of the stuff morning and evening, and if you also moisturize every time you wash your hands it will be even better! I need to pay special attention to fingertips and between the fingers.
I don't think it matters much what cream you use but I'd choose an unperfumed gentle one. I swear by Udderly smooth, you can get on Amazon. I also like Aveeno.

Also try to protect hands from heat. I got some lined rubber gloves for washing up (a husband is also useful for this) and I wear oven gloves even for taking the lid off a saucepan, the steam can easily burn you.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

 Hi Mulligans and everyone

 

This is my first post although I have been 'lurking' since August 2016!

 

I wanted to tell you that Cape has worked really well for me and that my multiple,and also large,  liver mets were no longer visible on c.t  scan 6 months in. All bone mets were sclerotic and stable.  I had a 20 week break last summer and am now maintaining good blood and c.t results on a 50% dose.  This dose reduction has really helped my poor fingers and feet.  My main annoyance is with a 2 stone weight gain which is hard to shift.

 

 

My lobular diagnosis was in Sept 2001 and then  liver (and nearly all bones) metastases in July 2016

 

Wishing you all the best

 

Sweep

 

 

 

 

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

Hi Mulligans

Like Lyndy I am on 1500 x2 and I have found this dose very manageable. I use Flexitol for my feet, but they do become sore now and again. I certainly won't be wearing high heels any time soon😉
I too have liver mets and have found Cape to be very effective in dealing with them even on a lower dose. I won't bore you with all the details, but please PM me if you want to know more. Suffice it to say, Cape has eliminated 4 mets and shrunk others.
I have CT scan result on Tuesday. Yikes. Anyway, got a weekend to enjoy before then.

Hope fellow Capers are doing well

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

Hi cape ladies

Regarding dose it seems they start people that a young are a high dose.

I am 65 and 5ft 5 and around 10 stone 7. I was started on 1800mg twice a day. Had to be reduced after 3 cycles as neutrifils went too low. Fell alot better in myself since dose was reduced to 1500mg twice a day.

I have upto to now not had trouble with my hands or feet but just in case I mostorise them with CCS cream which you can buy from Boots the chemist.
I just apply it after having a shower in the morning.

Hope that helps with people that are suffering sore feet..

Linda

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

Morning Tatyana

Sorry I can't help with swollen glands in neck. It must be reassuring that oncologist does not seem concerned..

Linda

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

Hi ladies, I'm on my second cycle of cape. Generally feeling very well. Feet are sore today but they tend to ease up during the day. Littlelizzie my dose is also 2150 twice daily. I'm 5,6 and 11.6 though (I'm also 42). How are your side effects? Not sure I want a dose reduction yet as I have diffuse liver mets so would like to give it the 3 cycles and scan first. I find good trainers a lifesaver when my feet get sore. It has been very infrequently. Instead of slippers I use sketchers and trainers when I'm out and about. I wear regular shoes when it eases up.
Anyone had success with reducing liver mets?

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

Hi Tatyana

Glad you had a good weekend in the Peak district. We have long been due some sunny weather.
Sorry to hear your swollen glands are giving you some discomfort. Although I have had various SEs while on Cape, I have not had this one so can't really help. The fact your onc seems unconcerned will hopefully reassure you. But, I know what you mean, there is always some SE or other to deal with while on treatment.
Have a good week all

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

Hi all,
Enjoying a sunny weekend in the Peak District, how often does that happen?!
I also have the occasional drink on cape, but it's just a very small glass of wine, as I find I just don't want more. Difficult if we open a nice bottle, hubby doesn't want to drink much either, you can keep it in the fridge for a day or two or cook with it, but sometimes end up throwing some away. Never thought I'd see the day!!

I've got several swollen glands/nodes around the neck, which are making it hard to get comfy at night. Not sure what is the cancer and what is side effects of cape, as swollen glands is on the list of possible SEs (along with just about anything else you can think of!). Anyone else had this? I've mentioned it to the onc several times, he's felt the glands in my neck, but isn't worried particularly.

Enjoy the sunshine while it lasts, which apparently won't be long!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lyndy

I picked up my tablets as normal and onc said an extra day off would not hurt. It just means I finish the tablets on the Sunday and will then see onc on the Tuesday so doubt my bloods will have recovered. If this is the case, then I have another blood test day before I am due to start next cycle. Sounds more complicated than it is.
Yes, I enjoy a drink now and again just that, logistically, I don't bother much when on tablets as I take them between 8.00-9.00.
Weather just breaking here, become a little cloudy.

Enjoy the rest of the weekend all

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

Hi George

I was wondering how you managed.

To be honest I have never stopped drinking even now on Capecebine. I asked oncologist when I started tablets reply I can still drink so long as I would know if I had an infection. I never drink that much that I would be totally out of it.

You mention you just took a day off tablets how does that fit in with having to pick up next course at chemo unit.

Still glorious sunshine here up here in the North East of England due to change tomorrow best make the most of it.

Last time I saw oncologist in March asked about tumour markers reply you could get them done every day and they would be different. Strange though the fact mine stayed at 15 for 4 years. 2010 till 2014 after I had my chemo.

Have a good weekend.

Linda

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

Hi George

 

I live in Northampton so not far from you at all! I'm now on my week break so hoping my energy levels recover before the next cycle. Glad to hear that things do get better Smiley Happy

 

Have a lovely weekend everyone

 

Littlelizzie x

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

Hi Little Lizzie

Glad to hear your rash is clearing up and work went well. I found the fatigue did ease up once I got used to the tablets. I don't want to tempt fate, but feeling quite well at the moment.
Where do you live in the Midlands? I live near Birmingham.

Have a good weekend

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

Hi Lyndy

Holiday was a real tonic. We went Friday to Wednesday so managed to fit holiday around Cape tablets. I just had an extra day off so that I could enjoy the weekend and have a drink- be rude not to sample the Spanish wine 😉
Regarding TMs, my onc goes on trends so only comments if they are consistently going up. I do wish he had never told me about them as it is easy to get hung up on numbers. I should get my CT result on 1st May which will give the best picture regarding what is going on.
The sunshine here has been amazing. Everyone looks so much happier.

Have a good weekend

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

Hi George

Thought you had been quiet. Pleased u enjoyed holiday. Did you take a break from tablets? Keep meaning to book a holiday. Not had one since starting Cap.

Just wondering do you still get your tumours markers done. Had mine done 3 weeks ago. Asked what they are when I picked up my tablets today they are 600 when queried it with chemo nurse. Reply I should not get hung up on numbers. What is the point in getting them done if they take no notice.

Pleased u had a good holiday. Brought the sun back with you from Spain. Least you have been able to get the washing on the line.

Hope CT scan gives you good results.
Linda
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George,

The rash is much improved and I got through a whole day of work! Other than the rash, some nausea and tiredness I haven't felt too bad on the Cape. Hopefully I'll get a reduction and then those will disappear to.

Thank you for the lovely sunshine! I am in the Midlands too and it's definitely hot enough to feel like Spain. Hope your ct scan went ok.

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

My pleasure. Now I have sorted the weather, looking at restoring world peace 😉😂If only.....
Think it is hotter here in the Midlands than Malaga, not as nice though 😊
Enjoy the sunshine

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

George, welcome back, glad you had a good holiday. And thanks for bringing back the Spanish sun!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning all

Sorry I have been a little quiet but I was on holiday in Malaga, loved it. ☺Back to reality now as sitting waiting to be called in for a CT scan at hospital. Yes, the fun never stops. I should get results in two weeks.
Hope your rash is easing up Little Lizzie and work is going well. I started on the highest dose and am now on 1500 mg twice a day. Still get a few side effects but they are tolerable.
Have a good day eceryobe and enjoy the sunshine

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

Hi Linda,

I'm going to ask for a dose reduction at my next oncology appointment. I shouldn't complain as at this moment it's a lot better that my experience of iv chemo. I have fluid around my lung which causes breathlessness and a dry cough. I'm a very active person, so not being able to breath is really frustrating.

The rash hasn't raised its ugly head again yet which I'm pleased about as it was quite painful! Back to work tomorrow and hopefully back to normality.

Glad to hear that you are stable ☺ Long may it continue!

Tatyana, I love the smell of coconut too! Every cloud and all that!

Enjoy the lovely weather everyone ☺

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

Afternoon littlelizzie

I have been on Capecebine since October. Since the dose was reduced end December I have been OK. Upto now I have not had the foot and hand syndrome. I have bone and liver mets now. I was bone only till last October. Had 2 scans since starting Cap and everything is stable.

I really sympathize with you it must be so painful.

Not sure what a pleural effusion is will have to Google it. You are so young having to cope with all this.

I am sure oncologist knows best for you.

I have had radiotherapy as well as reconstruction on that site.

Linda

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

Well it could be worse, I actually love coconut shampoos etc!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatyana,

I never had radiotherapy but I did have reconstruction so maybe the skin there is more sensitive? All I can think is that I'm on such a large dose to dry up the effusion. I'll speak to my oncologist when I see her next. Until then, I will just have to smell like a coconut! X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi littlelizzie,
I'm 5'7 and 9st7, so I'm bigger than you, but my dose is 1800 twice a day and I was told that is the max for me. So maybe they will reduce yours. Bad luck to get hand and foot on the chest! Did you have rads previously, as I'm wondering if that would make your skin on the chest more sensitive.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi lyndyloo,

I ended up at the hospital yesterday and they have told me that the rash on my chest is the one that is usually seen on hands and feet! They want me to carry on with the 2150mg twice a day and will see if a reduction is needed on the next cycle. I still think the dose is too high as I'm only 5ft 2 and 9st 4lb but I do have a pleural effusion so maybe that's why I have the highest dose? How is the Cape working for you? I'm hoping I can find a dose that isn't wiping me out as I'm only 42 and working full time.

Littlelizzie xxx

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

Evening littleliz

Welcome to the forum.

I have been on Capecebine since October started on 1800mg twice a day. Neutrifils were too low in December so dose was reduced to 1500mg twice a day.

Your dose seems rather high but as Tatyanna said they work it out with height and weight. I am 5ft 5 and weight around 10st 7.

Hope things start to settle down.

Linda

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

That does sound like a high dose, Lizzie. I'm on 1800 twice a day. But I think it depends on the person's height, weight etc. Glad you've found something that helps with the burns!

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

Thank you Tatyana. Lucky old me, I always get side effects that no one has ever heard of! Last chemo i had celulitus 4 times! I did think that they'd started me off on quite a high dose, 2150mg twice a day. Hopefully they'll get it sorted soon.

I've found that coconut oil has worked well on the burns. Looking forward to getting settled on Cape and back to my new 'normal'

Sending positive thoughts to everyone

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

Hi littlelizzie,
I haven't had the chest problem or heard of it before. I've had the hand and foot thing and this also affected my elbows a bit. But yours is a new one on me! They often reduce the dose of cape if people have problems with the side effects,and it can still be effective at a lower dose, it's a question of finding the right dose for you. I hope they sort you out soon!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello ladies. I've been following this thread for some time after being told I'd be on Cape since Letrozole failed after a couple of months. I have a plueral effusion which they are hoping will be dried up with the Cape. Having a second drain tomorrow. I've had one week of Cape but had to stop yesterday as I have what can only be described as burns across my chest! The burns are were my pectoral muscle would be.Has anyone else experienced this? Or is it only hands and feet that people have had problems with?

Good to hear that people do well for an extended length of time on this chemo. Hope I get longer out of this than Letrozole!

Hope everyone is enjoying their Sundays.

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

Hi Tatyana

Thank you for your explanation regarding lymph nodes..

3 cycles does not seem alot to see if capecitabine is working. Pleased oncologist is giving it abit more time for it to kick in.

Have a good weekend.

Linda

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

Hi.  Had mets to the lungs since May 2013 and been really well for 5 years.  Now my bloods are playing up.  Off work at the moment - not sure I will get back.  I had a bone marrow biopsy and the results are that they have found cancer cells in my bone marrow.  He said this is quite rare with breast cancer.  I am starting on Capecitabine next week.  As my blood counts are already very low they will have to monitor me closely.  I have already had 4 pints of red blood and 2 lots of platelets.  I feel options are running out.  Had anyone else had problems with their bone marrow.  thanks.  Maria x

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

Hi Linda,

I've completed three cycles of cape. I think this is fairly early days, I feel it makes sense to give it at least four before giving up on it! My lymph nodes are in the middle of the chest, all tangled up with lungs, blood vessels etc, and therefore inoperable. As for symptoms, I don't really know whether it's the swollen  lymph nodes causing it or something else, I have a stiff & painful neck and shoulders, made worse by tension (now why on earth might I be feeling tense?!) and it sometimes feels uncomfortable if I bend over, eg for gardening. But it's perfectly manageable, the occasional paracetamol seems to do the trick and relaxation exercises help too!

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

Evening Tayanna

Sorry to hear results were not as good as you hope.

May be cape is just taking a little while to fully kick in. How many treatments have you had now of cape?

Not sure where in the body the nodes you mention are what symtoms they would give.

Plus side least it has not spread to any major organs.

Yes I do find cape OK with not many major side effects thankfully.

Linda

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

Hi everyone! Just got results of my first CT scan since starting on cape (I've just finished my third cycle). Mixed feelings! No spread to lungs or liver (yay!) but the affected mediastinal nodes have grown. But the onc thinks this growth could have happened after my previous scan in January but before I actually started on cape, as there was a gap of 3 weeks at that point. So maybe it grew a bit and then the cape slowed it down, or maybe it's still growing despite the cape. Impossible to tell which!
So the plan is to do another cycle of cape and keep a close watch for any symptoms. I quite like this plan,as I'm tolerating the cape pretty well and I'd like to give it a bit more of a chance!
Anyone else had this kind of ambiguous result?
By the way, it's grey and miserable here but I did manage half an hour of garden tidying which gave me a warm glow! Hope someone somewhere is getting some sun!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lozzer

Just as well you got CT results through quickly goodness knows what could have happened. Pleased you are now sorted.

Good luck with your new chemo. Reading through the comments on that thread the side effects don't seem to be as bad as other chemo' s.

After the bank holiday I am going to ring up to find out the scan has been reported yet.

Weather is shocking here in the North East of England today. Hope the weather is better where are.

Have a good weekend

Linda

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

PS - my scan results take up to two weeks. Previously was longer. I now chase them up by ringing CT Department myself. Secretaries are normally good at helping you I find.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Lyndyloo - my symptoms were a puffed up foot and being a bit breathy. Apart from that have been doing all I normally do. Was a shock though.
I was admitted to the hospital with these symptoms the previous week. Did bloods, chest xray and ultrasound on leg then discharged me. Thank god I already had the CT booked!
Tatyana - thanks. Hope you are coping ok.

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

Afternoon Lozzer

So sorry to hear you have been in hospital. Just curious did you have any symstoms before CT scan? I have been on Capecebine since October. Just waiting for my CT scan results. Did wait long to get your CT scan results? Upto now I have been waiting 2 weeks but was told at time it could take 5 weeks.

Pleased consultant seems to have it all under control.

Linda

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

Lozzer, sorry to hear you ended up in hospital, but it's great that they caught those clots and are sorting them out. Sounds like you are doing ok, if the treatment seems to be working it's easier to put up with all the cr"p!!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Oggy,
I haven't had experience of that, but it sounds like your onc has got it covered. If they are happy to wait and see, I guess that is good news. All this uncertainty is tough, isn't it!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Sorry for delay in responding to replies and just want to say thanks. I ended up in hospital with two clots in my lungs after these showed up on my three month CT scan to see if Cap is working. Now on blood thinning injections so all good. Upside is that I got CT results earlier - still have to see consultant to confirm all but am given to believe mets in my liver have shrunk. All worth it if treatment is working 😁
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ct scan

hi just had results from ct scan which shows lung mets stable but the scan has shown up 2 more lesions on my spine ( previous scan showed one first scan showed none) Consultant thinks that it is possibly cancer that is resolving on treatment and that is why it is showing up. Bone scan in january was clear of cancer. I have no back pain to indicate anything . For the moment onc will monitor for any changes. Has anyone else had this where lesions show up