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Xeloda / Capecitabine - Your Top Tips, please?

Waffles
Member

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

Hi cape crusaders,
Sorry I've been under the radar recently, I had problems with increased bone pain for three weeks then very little pain for two weeks then liver niggles. My onc ordered bone and ct scans and I was suffering from a fair bit of scanxiety as I was certain things had got much worse and that I was going to get put on IV chemo. Anyway, today was my results day and things were much better than I expected. My liver mets, which were small anyway are now even smaller. My bone mets look the same on the CT as they did in Feb but there is a bit more uptake on my bone scan. Apparently nearly all my bone mets were sclerotic from the start, so it is hard to tell what they are up to. In any case my last bone scan was was November which was a month before my Cape started so progression, if that's what it, is may predate Cape. The upshot is I am to stay on Cape. I am so pleased. Not least because I was wakened by a Magpie pecking on my window yesterday and passed a funeral on my way to my appointment. I took these as terrible omens for my scan results. So it looks like you can have loads of aches, pains, liver niggles and awful omens and still have a fairly positive scan result.
Hope you get back on a reduced dose soon Tomboy.
Sorry to hear so many of my peachy pals are suffering bad side effects at the moment. I'm sending lots of (((hugs))) and positive vibes to you all. Best wishes xxx
Barton
Member

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

Hello tomboy, so glad you have posted! Glad you have had the time off Cap - you so obviously needed it with such drastic se's after only one cycle! Glad your Onc is taking notice and going to let you have a reduced dose. I have read that it can work just as well. I think they just start you off high to see how much you can tolerate.

 

However, I am sorry to read you are having a lot of pain. I should follow EJ's advice and let your Onc know when you see him/her. I don't have any advice re liver mets as (as far as I know) I don't have any. Will be having another CT scan after the next cycle (my 8th since restarting), so hopefully will find out what is going on. I should also listen to your partner and try not to worry. Not easy, I know!

 

EJ, I think Carolyn is going to try to arrange something for next week. Hopefully we can all get together soon.

 

I hope everyone is doing OK re se's, etc.

 

Hugs. Barton.x

 

Edited to add: tomboy, your liver pain might just be your liver reacting to the high dose of Cap, and hence be working well. Whatever, you have to tell your Onc.

EJ81
Member

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

I'm a football widow! Tomboy it's good to hear from you although I'm sorry you're still not feeling great. I had some pain under my ribs like you describe and found the anti sickness steroids seemed to help. It is worrying but it doesn't have to mean major progression, it can be down to the position of any mets. I know I've got a couple right at the top of my liver near my diaphragm and some days get pain and others I feel fine. Do mention it all to your onc though.

Barton I was sorry not to meet you this week but it is lovely knowing there are some other ladies nearby (really nearby as it turns out!). I look forward to seeing you next time.

I will dig out the mouthwash as I had it for previous chemo's. My mouth ulcers aren't too bad but the one in my lip is frustrating me as it just looks so awful - like a big white blister! We had some bonjela in the so I tried that but it doesn't seem to have done anything.

I hope you've all had some sunshine. It's been a bit mixed here but sunny this afternoon so I totally overdid it trying to weed the garden. Putting my feet up now though.

Love to all you peachy Cape crusaders.

Ellie xxx

tomboy81
Member

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

Oh my gosh! I'm so sorry for my radio silence of late. Many apologies if I was making you worried. Here's what's going on with me right now....
So after an AWFUL first cycle of cape (which burnt my hands and feet so badly I could barely walk or hold cutlery) onc gave me a 2 week break to recover. At my next appointment, onc felt I still hadn't recovered enough so gave me another 2 weeks off meds. I wasn't particularly happy about this but reluctantly agreed. I have an onc appointment this Thursday where I'm expecting to restart the cape at a reduced dose. My biggest worry is that during the past week I've been having terrible pain under my right ribs. My appetite has decreased and I've been getting fever-like symptoms. I'm really worried that this is a sign of major liver progression. My partner is trying to reassure me that I might've picked up a virus at the office or whilst commuting but I'm not so sure.... This is the first time I've felt really ill and in a lot of pain. Plus I have MAJOR fatigue. Feeling pretty rough right now 😞
I hope you've all had lovely weekends and haven't become football widows!
Stillhere
Member

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

EJ I have a mouth ulcer from my trial drug, Ibrance, and I have been given an antiseptic mouthwash, I think it's the same as Corsadyl that's advertised charmingly with teeth falling out ! 😦 I've also got a tube of IGLU from the chemist. It coats the sore and has a painkiller in it. I find it very good xx

Barton
Member

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

Hello Marirose (and all), yes thanks, doing OK. I'm 3 days in to my second week of Cycle 7 and looking forward to my week off! My hands and feet are OK atvthe moment, thank goodness. I feel for those of you who are suffering though. I'm sure that having to drink a lot (4 pints a day at least, which works out to roughly 12 glasses a day - any liquid, I even count soup as one) has helped a lot this time around. Why don't you give it a try?

 

EJ, so sorry I couldn't meet you the other day - the workman took far longer to do the work than I had ever thought they would (won't be using them again!). I do hope to meet you soon. Sorry to hear you have a sore mouth. I have had that before, but at the tail end of my previous lot of cycles so it sorted itself when I had the long rest. Could you ask your Onc for an extra week off before the next cycle? Whatever, though, I should mention it to him/her.

 

Mazurka, glad to see you back again. Hope you enjoyed your holiday, despite your wayward insides. Sorry to read you are having problems. I take Loperamide as I get the runs whilst on Cap, but don't seem to get cramps/pains such as you describe. I am aware, though, that one of Caps se's is stomach upsets, which can include nasty cramps. I should mention it to your Onc when you next see him/her as they might have something more effective that you can take.

 

Tomboy - where are you? We are all worried. Please post and let us know how you are getting on.

 

Hugs and best wishes to all Cape Crusaders. Barton.x

EJ81
Member

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

Hi all, I'm sorry I haven't been on for a bit. Mazurka I take metoclopramide (spelling?) because I have been feeling queasy and that seems to have evened out the effect on my bowels. Technically it's an antisickness but has the same effect.

Thanks for the tip about the clingfilm. My feet were quite uncomfortable but I think it's a combination of the chemo and the lymphodeoma in my legs, the heat hasn't helped but they feel better now I'm on my week off and the weather is a bit cooler.

Marirose I might look into Lycra gloves - where did you get yours. I could do with something thin to go under my Lymphodeoma glove as its a chunky knit and it is rubbing the dry skin on my hand.

Has anyone had sores on their lips and gums? I have a sore patch on my lip that looks like a blister that is taking ages to heal. I've had it about 6 days now.

I hope everyone else is doing well. Lots of love to you all xxxx

Marirose
Member

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

Hello Mazurka

Sorry no-one has been on the thread to reply to your post. I was interested in your methods of dealing with the plantar palmar syndrome I remember reading about the cligfilm in the early posts I have not tried it my feet.

They have remained fairly good apart from last cycle when I got dry skin but it didn't last long the only problem with my feet are my big toes the last tablet chemo seemed to set my left big toe into a swollen state it looked like a ingrowing toe nail but a podiatrist said it wasn't and she had seen other ladies who were on chemo with the same condition. I am on anibiotics for it and it looks as though it is helping. I did read on the internet that lycra gloves would make hands worse sorry but I don't agree because they have helped me to manage much better I cream the hands before wearing them. But I do wear bamboo socks and gloves at night. I have bought cheap cotton gloves from poundworld and sometimes wear them when wearing gardening gloves. Oh and I use creams with urea in the hands now look as though they have passed the rough state. I am on cycle10 by the way in my first week.

As far as the stomach goes I am sorry you are suffering with problems there I do hope your onc was able to help you when you saw her/him this Wednesday. My only problems there are constipation followed by the runs it seems to sort itself out with a little help from movacol.

 

Waffles I do hope your pain is now under control and Tomboy are you still with us on the cape?  Barton I hope you are still doing well with the peachy soldiers

 

Love to all our cape crusaders (((((((((((((((hugs)))))))))))))))))) xxx

mazurka
Member

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

hello everyone - sorry for the long gap; I've been busy, but just caught up and seen that some of you are having a hard time, others less so. Sounds like you reached the work right decision, Tomboy81, and I hope the ses are more tolerable as you adjust dose/frequency.

 

I've just had an extra week's break from Cape (we were away - again!) and am due back on this coming Wednesday.  I had a lot more trouble with my guts/stomach/bowels this cycle (no 11) and haven't noticed much on this thread about that.  I am also a bit worried that I may have incipient ascites, which could also be upsetting my intestines. I thought I was just a bit bloated from the upset stomach, but I'm not convinced.  And ascites could of course mean progression. I see the oncs on Wednesday.

 

I have been using loperamide, which is OK at the time and very soothing, but I can't work out the right amount to take - if I have too much I feel that the normal processes aren't happening and I also tend to get more stomach pain, which is horrible. I have never been someone who had stomach troubles so I guess I have a low tolerance for it.  I suppose improving this is a question of trial and error and nobody will have a magic formula.

 

Back to the feet for a moment (I haven't had anything like the same problem with hands that others describe).  I have continued with all sorts of urea cream - my GP prescribes Hydromol, which works quite well for me though it doesn't have the nice cooling effect of some of the others.  When the plantar palmar syndrome is at its height I get a sort of red line round my foot below which everything is hot and bothered, and above looks pretty much normal.  My right foot is always worse than the left - I assume I just walk harder on it.- and my toenails are pretty ropey and not a pretty sight. I've tried sweet almond oil which is nice (also for fingernails) but I am not convinced by it.  If I know I am to be doing a lot of walking I put on protective dressings.  The GP nurse prescribed Allevyn and  Aquacel padded things with silicon sticky surfaces.  They're big (7.5 and 8 cm squares) but I cut them about a bit to fit, and stick down any loose edges with micropore.  They really work well for me as prophylaxis, except they aren't waterproof and I can't get them to stay on my little toes...I also wear thick sports socks (economy packs of 3 from M&S, two white and one black) which are definitely not stylish but they work.

 

Two last things to try - slather on the cream and then wrap your feet up in cling film.  For the whole night if you can stand it (you need socks on top) or failing that for an hour or so each day. You can do hands too, using those gloves all the nurses have.   It has helped me a lot, as has sitting with my feet in lukewarm mildly salt water.

 

Good luck everyone and let's hope the pink soldiers are doing their stuff...

 

 

Barton
Member

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

Hello all,

 

Sorry to hear of all your pain,  Waffles. Glad it has subsided over the last few days, though. Long may it continue.

 

Hugs. Barton.x

Waffles
Member

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

Hi Marirose,
Sorry to hear your hands are sore. I hope it calms down on your week off. I'm very lucky in that my hands and feet are just very dry but not split. Feet look a bit to weird to wear sandles though which is a pain in this weather.
I 'm not sure what's going on with me otherwise. After about 4 weeks of increased pain, things have gone back to normal for the last 8 days.. I now take double the dose of long acting morphine but I don't think that can account for the lack of pain now as when it was bad a few weeks ago I was taking 4 extra doses of morphine in addition to my long acting morphine. So I' m actually on a lower dose now. I've had a bone scan and will get CT scan next week and results week after that. Whatever the result, I'm enjoying just having mild pain..
On the matter of sensitive teeth, I've got a very sensitive crown at the back of my mouth which rwally only is sore when I'm brushing my teeth. I assumed it was denosamab causing that will say to onc next time I see her.
Best wishes to all my peachy friends xxx
Marirose
Member

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

Hi peachy cape crusaders

 

Ellie what a great site you have found thankyou I was very interested. I hope your feet settle down I found myself reading the old post they have good ideas and remedies.

 

One of those was vitamin B6 Nicky's post I took my BCC booklet on Capecitabine and tried to see a doctor there was only one and I do not like her as a doctor at all because when I had my ulcerated skin mets I went to ask if I could have help with the dressings. She shot off out of the room came back and sent me off to the nurse. When I asked the nurse why should she be so brusk the nurse said she didn't like wounds. Any way she gave me the tablets after reading the book and computer and said I will give you 10mg once a day uuurrrgh she is hopeless I think I may ask my onc about them.

 

Barton you have been a big help on here and I am so pleased you are still doing well long may it last.

 

Waffles  how are you is your pain any easier and are the se getting at you

 

Well I am trying to watch Fiona's healthy foods so I will say Love and ((((((hugs)))))) to you all xxx 

Barton
Member

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

Thanks for the link to the article, EJ. It was very interesing. Luckily my hands aren't that bad at the moment, and feet totally ok. Will keep that advice in mind, though, for future reference (although I hope I won't need it!).

 

Don't worry about posting multiple copies - we have probably all done it at some time.

 

Hugs. Barton.x

nicky08
Community Champion

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

Hi ladies

Sorry that a few of you seem to be suffering badly with the hand and foot syndrome. I may have mentioned this before, although can't remember where or when! I was prescribed Vitamin B6 tablets when my hands got sore whilst on Capecitabine. The dosage was 3 tablets per day of 50mg. I did take them occasionally but luckily didn't suffer too badly (as I've said before I was on a 20% dose all the time) so I can't say if they actually helped a lot but maybe it's worth asking about them? I had them on prescription from my oncologist.

Hope everyone's SEs improve.

Nicky x

EJ81
Member

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

Oops!! It kept saying there was a problem! You're lucky you didn't get 6 copies!!!
EJ81
Member

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

Me again! Just been reading up a bit on the hand and foot thing and wax wondering if anyone has been prescribed any anti-inflamatory creams or anaesthetic creams to help with their symptoms? My feet are really burning now and I know my oncologist has said if my symptoms are bad she can reduce the dose but I would like to think they could try to manage the symptoms first.

I was reading the article below and it mentions several treatment options at the bottom including the creams. Forgive me if you've heard it all before as I know I'm new to Cape, but I just thought it was worth sharing if it gives us some other things we can ask for to manage the discomfort.

 

http://www.cancer.net/navigating-cancer-care/side-effects/hand-foot-syndrome-or-palmar-plantar-eryth...

 

Xxx

 

EJ81
Member

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

Me again! Just been reading up a bit on the hand and foot thing and wax wondering if anyone has been prescribed any anti-inflamatory creams or anaesthetic creams to help with their symptoms? My feet are really burning now and I know my oncologist has said if my symptoms are bad she can reduce the dose but I would like to think they could try to manage the symptoms first.

I was reading the article below and it mentions several treatment options at the bottom including the creams. Forgive me if you've heard it all before as I know I'm new to Cape, but I just thought it was worth sharing if it gives us some other things we can ask for to manage the discomfort.

http://www.cancer.net/navigating-cancer-care/side-effects/hand-foot-syndrome-or-palmar-plantar-eryth...

Xxx

 

EJ81
Member

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

Thank you both. I used to have sensitive teeth as a teenager but haven't had problems for years so maybe it's a hormone thing. Weirdly they seem fine today so I'll wait and see what happens. Feet feel a bit odd today instead so giving them some tlc now. A paddle in the sea helped earlier.
Love to you all xxx
Marirose
Member

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

Morning Cape crusaders

 

My hands have driven me up the wall this morning its like having hot aches I could do with one of those stress balls to get my fingers going.

 

Ellie while my mouth is ok I do get reactions with one tooth from time to time it is sensitive and I need to use sensodyne it all started from my first chemo in 1997 and every time I start a new chemo it always plays up. So it could be something like that I hope it sorts it out for you too.

 

Love and ((((hugs)))) to all xxx

Barton
Member

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

Morning, everyone.

 

Marirose, I think EJ81 is right - I think you should mention it to your Onc, but perhaps stress to him/her that you don't want another dose reduction, but would be willing to take an extra week (or possibly 2) off. So sorry that you have been having such pain, but glad it is easing slightly now. You have described the feeling in fingertips perfectly when you say that they feel like you have fallen over on gravel - it's a very strange feeling when you know you haven't fallen over.

 

EJ, I have to admit I haven't had painful teeth at all - perhaps an se I have managed to avoid! Sorry you are having trouble, though. Would it be an idea to ring your dentist and ask about it? Or your Onc?

 

I am on the last day of my week off after my 6th cycle. I go to the Chemo Dept today to collect my next lot of pills this afternoon (as long as my bloods are ok). Fingers feeling a bit rougher than other cycles, but feet ok.

 

Good luck to all Cape Crusaders. Hugs. Barton.x

 

 

EJ81
Member

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

Marirose how miserable for you I hope you get some relief on your week off.  I understand your reluctance to say to your onc about the side effects but would you be prepared to go through those symptoms again? Would an extra weeks break help give the side effects time trying calm down? After 9 cycles they must have built up considerably. Its so hard getting the balance right isn't it.

I've been wanting to ask if anyone gets sensitive teeth from this treatment? I couldn't drink my tea this morning as it was making my teeth quite painful. I had to use a straw! Minor really, just a bit odd!

Love to you all peachy Cape crusaders xxx

 

Marirose
Member

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

Hello Peachy cape crusaders

 

I hope you are all still ok it seems a while since we had a chat. I have not felt too good with myself this cycle no 9 my hands got worse it was my left hand and foot that suffered most and Barton i am right handed too.My fingers felt so stiff and the colour was almost purple at times on my hands then they went flakey. Thank goodness the cracks disappeared at the beginning but the hands throbbed at night and felt like I had fallen down on a gritty road when I was a child. I took comfort soaking them in cold water then covering them in udderly and vaseline. They have now started to settle down I am on my first free night of my free week and i am hoping tthey will go back to normal before next week. My feet had been ok until last week when they left started to skin and then the right.  thankfully they soon went back to normal I continued to use my Aldi cream and vaseline at night and I wear my bamboo socks and gloves.

 

Do I tell the onc next week how bad it has been. Remember she noticed my red hands and reduced the dose by 10% I really do want this treatment to work because it's the first time I have had a reduction. I just hope they continue to repair I may be coming off soon anyway because I may be having ECT

 

Well love and ((((hugs to you all xxx

Barton
Member

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

Lizzy, Many thanks for looking into this for us. Looking forward to resolution as I have to say, it's very annoying! I can't even go back and correct the inapropriate capital letter at the beginning of this post!

 

Hugs. Barton.x

EJ81
Member

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

Glad you mentioned that Barton I thought it was just me. Waffles, fingers crossed that your results show everything is behaving. I am glad your onc has listened to you and got things arranged pretty quickly. There's nothing worse than that 'what if' feeling.  Xxx

Lizzy_BCC
Member

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

Hi all, 

 

Thank you for letting us know about the problems you are experiencing with accessing the forum on your tablet and I am sorry to hear you have been having issues. 

 

We have contacted are hosts and are trying to resolve this as soon as possible. If you have any questions please do get in contact at moderator@breastcancercare.org.uk.

 

Best wishes,  

 

Lizzy 

Barton
Member

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

Me neither! Don't worry about jumping on - you are welcome! I know I picked the wrong place to mention the problem, but couldn't think where else to post. Now, of course, I have realised I should at least have started a new thread. Apologies to all Cape Crusaders. Back to normal service now.

 

Hugs. Barton.x

Charys
Community Champion

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

Sorry to hijack this thread, but I've been bleating on about it on another thread since yesterday morning and then I saw your post and jumped on it lol I'll be quiet now and let you get on with your discussion....just couldn't find anywhere on the forum to report faults. 

Barton
Member

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

Thanks, Charys - don't know how to do that, so thanks very much. Glad I'm not the only one! Hugs. Barton.x

Charys
Community Champion

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

Hi Barton, I have emailed the mods and given a link to your description on this thread, as it surmises exactly the problem I am having too. 

Charys
Community Champion

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

Same here, exactly as you described!!!! Also using a tablet. 

Barton
Member

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

MODS, I amend that last sentence - I can click in to the first line when I go to Options, Edit Reply, but I can't get in anywhere else after that. If I have made any other errors or spelling mistakes, I can't amend them. Sorry to postvthis here, but I can't think where I should let you know.

 

Thanks. Barton.x

Barton
Member

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

MoDs - I am having trouble editing my posts. I am using my tablet, but up until yesterday it has been fine. All of a sudden, I can't click back to a previous line or error to add something or make a correction. Have you changed something in the background? I can't even do it when I go in to Options, Edit.

 

 

Barton
Member

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

EJ, welcome, but sorry you had to join us. I, too, have loads of reminders on my phone! Trouble then is remembering which one is for what! Smiley Very Happy

 

Waffles, so glad your mouth is feeling better. It's miserable not being able to eat properly. Hope you get good results from the scans - I understand your anxiety, though. I think we all go through that. It's not the scans that worry me, though - it's the waiting for the results!

 

Hugs. Barton.x

Waffles
Member

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

Hi cape crusaders,

Had appointment yesterday and explained my increase in pain. I was sent for and xray and will be getting a bone and CT scans next week. My onc put my morphine dosage up but is concerned that perhaps morphine may not be very effective for me and that I may need to try something else soon. My mouth problems resolved during my week off and I'll just watch what I'm eating and drinking over this cycle. I was very happy with the appointment and felt all my concerns were addressed. Not looking forward to more scanxiety though. 

Hope everyone doing well and that you are recovering on your treatment  break Tomboy.

Best wishes xxx

EJ81
Member

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

Marirose I'm glad the Vaseline helped. I did it in desperation one day and haven't looked back!

Barton I'm glad your hands aren't sore but the dryness must be frustrating. Has anyone tried olive oil? Not practical I know but I know it was recommended for my son's drybskin when he was a baby so I might give it a go if some of the others don't do the trick.

Tomboy I do hope you are feeling better now that you have had a bit of a break.

I am officially a peachy warrior now. I picked up the pills today. Just have to remember to take them now. Ive set lots of reminders on my phone to help.

Xxx

Barton
Member

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

You are welcome, Marirose.

 

I'm at the end of my 6th cycle since restarting, and my hands are looking very dry. No splits on finger tips this time, but I have splits (not painful, strangely!) in the inside creases of my left little finger! No idea why just there, but when I get dry hands normally (when not on Cap, I mean - just winter weather), the soreness always starts with my left hand. I'm right-handed, so I would have thought that hand would be more vulnerable, but apparently not. As I said, strange!

 

I hope your soreness gets better soon, Marirose, and your mouthn is improving, Waffles. Tomboy, I hope you are getting somecrelief in your slightly extended break.

 

Hugs to all. Barton.x

 

Marirose
Member

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

Hello Peachy crusaders how are you all today

 

I hope your mouth is still better Waffles are you still working?

 

Tomboy I hope you are feeling better on your first week off cape maybe a reduced dose will work better for you.

 

EJ thankyou for your tip about the vaseline around the eye area my OH was having trouble with an itchy eyebrow he tried it and it worked oh and it helped my eye too. It's always good to hear these tips.

 

Well my hands have been terrible OH wanted me to ring the hospital but I said no I want to sort them out myself. The splits healed quick with Barton's remedy of savlon and plasters thankyou Barton. I now have dry skin which I think udderly is curing I sent for some hand cream with Eura in as well as a tub. Although my hands look scaley correction left hand it does seem to be doing something. The hands have been bright red but are now settling down and the fingers so stiff feeling which are now getting more flexable The feet have been great but dry skin started to form on the left foot why the left side I've always been strange. Thats me maybe the lower dose is starting to work I hope so. I am at the end of my first week on the 9th cycle.

 

Well lots of love and ((((hugs)))) to you all xxx

Waffles
Member

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

Thanks Barton. I hate scans and all the worry that goes with it but if Cape isn't working it's better to find out now rather than later. xxx
Barton
Member

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

Waffles, I'm hoping you get a scan soon! If nothing else, just to put your mind at rest. Sorry you are having more pain. Glad your mouth is OK at the moment - keep doing what you are doing.

 

Hugs. Barton.x

EJ81
Member

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

Tomboy I'm glad you're getting a bit of a break. I'm sure the new dose will work just as well. It certainly sounds like you've given everything a blasting to start with.
Marirose I hope your eyes are better. Have you tried putting some Vaseline under them? Mine get dry a lot but also water all the time! I find a bit of Vaseline on my eye bag area really helps them feel less sore.
Hope everyone is doing OK xxx
Waffles
Member

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

Hi Tomboy,

It sounds like your onc has acted very sensibly. Fingers crossed your side effects calm down enough to go back on a reduced dose soon. I think you are right to put the job off for now at least. 

Barton and Marirose,

I'm not having too many problems with my mouth today as I'm just eating and drinking  the right things. 

As regards my pain, some days are worse than others. 

Most days it is mild to moderate and occasionally a bit worse. I tend to feel achy in quite a few places and certainly not in severe pain.. Luckily, I'm not having any problems sleeping either. I think what is worst is just the  general increase in pain compared to the couple of months before where it had been mild most of the time. It just sets me off worrying that cape is no longer keeping me stable. A scan is definitely in order. 

Best wishes xxx

Barton
Member

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

Hello Marirose, glad the Savlon and plaster trick is working for you. When my fingertips get sore, I do it at night for several nights, then I tend to get a few days free when things aren't too sore.

 

I'm doing OK, thanks. Half way through cycle 6 since restarting. Doing so much better this time around. I have a little breathlessness, but nowhere near as bad as the last lot of cycles. Also, probably my own fault for not getting enough exercise. I have had a bad back again the last couple of weeks, though - I think I did too much when I was moving 2 weeks ago. I'm not quite sure how, though, as the removal men packed everything and my sister helped me ever such a lot.

 

I hope you are doing OK?

 

Hugs to all Cape Crusaders. Barton.x

Marirose
Member

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

Hello Peachy warriors

I hope you are all well and looking forward to the weekend.

 

Dear Tomboy so sorry you are suffering I hope the 2 weeks will help and the reduced dosage works apparently some ladies have stayed on the cape at reduced dose for years. So maybe if it works for you as Barton says you may still be able to take your European job. Don't give up hope.

 

Waffles I do hope your pains start to ease soon you really are going through it with pain does it keep you awake at night? Also your mouth must make you feel pretty low right now. I do hope you get some relief from it. Pineapple is very good for mouth ulcers it is a disinfectant and does help when it is frozen so maybe it may help your sore mouth even tinned pineapple is good. But if I get sores I always use a gel called Gengigel from boots it works wonders.

 

Barton I hope you are well. My BN wanted me to go back onto Udderly for my hands she said it has no added additives so I have tried it again and it does seem a little better but 2 days is not long to say whether it will work. I do use Savlon under my plasters though and it does look better.

 

Love and ((((hugs)))) to all xxx

 

 

Barton
Member

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

Hello Waffles, I hope your mouth improves soon. If you are OK with bland, stick to it. I know what you mean about cold hot drinks - I drink coffee, and can't bear it when it goes cold. Yuck!

 

Hugs. Barton.x

Barton
Member

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

Hello tomboy, glad your Onc has given you an extra couple of weeks off. You definitely needed it. And good that he/she is willing to give you a reduced dose. Hope everything goes OK. You never know, you may get another chance at the job in Europe at a leter date, when you are feeling better.

 

Hugs. Barton.x

tomboy81
Member

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

Just a little update from me. I've been given a 2 week break after my first cycle of cape to allow my hands and feet to heal. My bloods were fine except one liver enzyme has risen slightly. Onc didn't seem to worry too much and said it would be too early to know if cape was working or not. I go back to clinic in a fortnight with a view to restarting on a reduced dose (if my SE's have calmed down enough) In light of the above, I've decided to decline the job offer in Europe. I'm worried the blood test shows that the cancer is continuing to party in my liver in spite of the peachy warriors.....
Happy Friday everyone. I hope you all have lovely weekends planned. I might hobble to the cinema to watch the new Damian Lewis film- yum! Eye candy... 😀
Waffles
Member

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

Hi Marirose,
Thanks for advice. Last time I was scanned ( 4 cycles ago) and found out everything was stable I was totally gobsmacked as I had been in quite a bit of pain then too. I really don't know what to think this time. as the pain got quite a bit better for a couple od cycles and now it has got worse again over the last 3 weeks. xxx
Marirose
Member

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

Hi Waffles and other crusaders 

Another mouthwash on prescription that I swear by is Gelclair it heals the mouth and gums. It is used alot on EE. I do hope your mouth soon settles down it is so depressing when these niggly se interfere with normal life. I would make sure you ask about a CT Scan normally I have one every 4th cycle and hopefully you will be like me when I thought the cape was not working.

 

Love and (((((hugs))))) to all Peachy Warriors xxx

 

Waffles
Member

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

Hi Barton,
Since I've worked out it is a side effect I'm adapting my diet. As long as I eat blandish food and lukewarm drinks I can cope. I actually like bland food, so no real problem there, but luke warm tea isn't that pleasant.
I'll definitely ask about Diflam though when I see onc next. Although, not 100% convinced Cape is still working as over the last three weeks I've become quite achy with lots of niggly pains. It isn't too dreadful but it's definitely an increase in pain conpared to the two months. It's been four cycles since my last scan so I might ask for an other one soon. We'll see what onc says next week.
Best wishes xxx
Barton
Member

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

Hello Waffles, I did have a bit of a sore mouth and lips by the end of my first period of Cap (ending early last year). As I was then taken off Cap as it had worked so well, I didn't have to deal with it as all my se's gradually wore off. I know that is not much help to you, unless you ask for a short break from the Cap. I was, however, given a mouthwash to use if things got bad. It is called Diflam. I never used it as I can't bear using mouth washes/gargles, etc., but it was supposed to work very well according to other people on this forum.

 

Hope this helps. Hugs. Barton.x