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Xeloda / Capecitabine - Your Top Tips, please?

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

Hi,Kaye,your onc is right it's best to nip SEs in bud before they take too long to sort and you need longer off. Yippee to week off.
I must say this cycle 3rd has been my worst ,I'm totally exhausted ,very breathless and I think looking very pale ! I did wonder if red blood cells were low as lips & gums looked very pale.i did at one point think lips looked a bit blue but that's probably just my mind seeing thing that aren't there and dodgy lighting in bathroom lol. Oh well roll on Friday.
Huge hugs and easier cycles,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Cap gang hope we,re all doing ok .Been for my appt today to pick up 4th cycle of Cape and ONC has given me an extra week off as she says my hands and feet need it to recover ,but the only thing is you worry that the little buggers will get worse.She said better to have an extra week off than carry on and feet and hands get worse then they would have to leave it off for longer.So another week of no Meds yippee.
Take care all
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,cap gang how are we all doing? Still counting day on the peachy devils,only tow days to go yippee.
I know what you mean about oncs not understanding. I struggle to take them knowing they are going to make me sick. I think if I knew they were working this would be the sugar to help the medicine to go down !
Katherine,try to eat little and offer even if it's a sweet you fancy! Mine was a Diam bar yesterday afternoon!! I'm living off toast and marmite at the moment. Roll on next week when I'll eat anything if it sands still long enough!!
Huge hugs ladies and hoping the peachy devils are kicking Cs butt for all of us,Helen xxxxxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Bev, that's exactly it. I eat two or three mouthfuls at most and then can't stand the thought of eating anything else at all. But you're right, I'm worrying it's an indication things are getting worse when that is very unlikely given my recent results. I just don't trust this damn disease!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nicky, that's exactly what my oncologist called it - anorexia! She said it may be due to the tumours in my liver but I wish she hadn't said that because every time I don't fancy something to eat I become ridiculous and think 'are the tumours growing? What does this mean'. Mentalist that I am! Thanks for letting me know that some of you did experience this. I know everyone's experience is different but it so helps me to think others have had the same and that this isn't some new hideous mutation of the cancer! Also, I totally agree about the tablets. I have mine in a dispenser and literally count down the days. Oncs have no idea and I mean no idea what this is like. Still long may the peachy pills continue to do their work and soon may cures be found for us all.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies, I'm not on Cape now but was for 18 months and if I remember correctly one of the side effects is loss of appetite, or anorexia as they term it! My appetite definitely was affected early on but it did come back and luckily I didn't have any taste changes so was able to eat and drink most things. Oh, I've just remembered done earlier posts about looking forward as the strips of tablets gets smaller and smaller. I used to hate taking them at the beginning and I think the oncologists underestimate the impact of having chemotherapy every day for 2 weeks. It's seen as an 'easier' option but I felt it reminded me every day of my cancer, well twice a day in fact when I had to chug down 5 tablets each time, not to mention any of the side effects. There's a bigger impact than they think especially if you're not feeling great on this chemo. Having said that I hope the peachy pills continue to work well for you all.
Nicky x

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

Hi katherine. Ive lost my appetite a bit too since starting Cape. The last 2 months its been more noticeable. I seem to feel hungry but then find i can only eat a few mouthfuls. My onc said to try eating smaller meals more often even if its just crackers and cheese or small salad. Think it must be the Cape because when onc was asking me at last clinic visit about side effects she asked how my appetite was. Sounded as though she was expecting me to say it had diminished.
Trouble is i dont seem to be losing any weight!!
Dont worry too much about it...try and eat small amounts.
Love bev xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen and Ruth, thanks for your posting. I can't drink tea at all anymore. My loss of appetite is worrying me but my Onc has said she will put me on a tiny amount of steroid to see if that kick starts my appetite a bit. I hope so otherwise I really feel like I'm ill if you know what I mean. She did say that the lack of appetite could just be due to the tumours in my liver which makes me feel really depressed as I then feel. Like they are coming back or not going. She called it Catchexia or something. It makes me feel a bit sad to be honest. If my appetite was fine and I didn't feel sick all the time I think I could forget this dammed disease for a few minutes! With regard to breathlessness I get that all the time but especially when taking the Cape so I like to think that it is the Cape battling with those rogue little cancer b*ggers!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh thanks helen ...yes didnt think of that! xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Bev,you can PM with names ect.
Xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Kaye yes i am at velindre. You may be under the same Onc as me. Not sure if we're allowed to mention the names on here (admin?) But his initials are SW and he's a bit quirky lol!! We may have even been there at the same time...you never know! Xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,jo,yes,no problem you can PM me anytime
Hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Bev - good luck for your scan on 4th and subsequent results! Barton.x

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

Helen, sorry, just read your post of 8.31 this morning - scan at end of Nov.and results early Dec. Getting the results is the nerve wracking bit, isn't it? Good luck for that. Barton.x

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

Hello, Helen, thanks. Yes, I will certainly try to rest. Lots of very early nights I think! And yes, it was a wonderful surprise to see the lovely flowers and very good of them at work. Good luck to you on your upcoming scan (? Hope that is right). Barton.x

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

Bev, you have captured my excitement completely at the gradual reduction of tablets in the box! You have been reading my mind! If my blood tests are OK tomorrow, I get to start my 6th cycle on Thursday evening. I have to say I'm not looking forward to it! I suppose, if it's extending my life it's worth it, but it's hard thinking that sometimes when I'm going through the miserable bit.  Good luck to you. Barton.x

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

Hi all
Hope everyone is well! On the subject of the tablets - when I've finished them my daughter (11) and I jump on the boxes and high five that another cycle is complete! Mad I know but very satisfying!
On SE's - has anyone had any pains ,like nerve pain, in their arms? Have had this over the weekend. Not sure wether to ring CNS or not.
Helen- would you mind if I PM'd you?
Jo xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning Cap gang hope we,re all ok today.I too get excited when I see the silver packets getting less and less as you know you are coming to your week off,what exciting lives we lead.
Bev my tumour makers have reduced dramatically let's just hope the scan shows they are shrinking as well.My Onc has decided not to scan me till after 6th cycle.Do you get treated at Velindre too Bev?
Love to you all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,bev,lol,yes,I do the same .i have them in a pill box with the days on and it's great to see them go down ,I keep counting days like some macabre advent calendar ! Instead of a chocolate I get a pill to make me feel sick lol
. I'm getting my scan at the end of November ( hopefully as no appointment as yet) because I had the three week break so onc wanted to give me another cycle before scanning (4) see him on 4th December for results,yikes! Totally terrified as nothing's worked so far!
Hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning all..helen its my week off too after Wednesday. Your scan must be due around the same time as mine on 4th nov.
Does anyone else feel like me and get excited when the little silver foil packets of cape get less and less in the box??
I find I can't wait to take them when there's only a few days left just to see them reduce even more lol! Its the eager anticipation of knowing my week off is approaching!
Kaye...your markers have reduced dramatically! That's got to be good news.
Hope everyone's ok here today.
Love to all....bev xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good morning cap gang ,
Oh Barton,that was a lovely surprise from your work. You have got a busy week! Just make sure you rest xxxxxxx
How's everyone doing. It's very reassuring talking about SEs as it stops me worrying .
Bev,yes,I remember you suffered from breathlessness when you started ,I thought it was your lung mets but yes,it must be the cap!
Roll on Friday to week off.
Take care ,huge hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Ruth thanks for the tips ,as is aid my hands and feet are the worst and I had to have an extra week off the Cape after second cycle and they gave me a reduced dose for the third,however my hands and feet are still sore so Onc told me to stop 2 days before I should have and she will have to see how they are on Wednesday.She also explained that everybody absorbs it differently and that your liver converts it into the chemo and depending on your metabolism is how quickly it converts it ,and that I must be converting it really quickly as feet and hands are so bad.She said it just shows it's working and she,s quite pleased that my markers went from 194 to 35 after just two cycles.Well done for being on it that long it is obviously working very well for you.
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Bev, glad you are feeling a bit reassured now. A bit of reassurance goes a long way, doesn't it? Hope the Cap gang isn't feeling too bad this evening. Don't know about you all, but I'm off to bed now as my body thinks it's 9.15 and has had enough for the day! Best wishes to everyone. Barton.x

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

Hi....as some of you are probably aware I've had an issue of breathlessness and fatigue for last few months and after reading your posts about having the same I'm pretty sure it must be the Cape. I started taking it at beginning of july and i can't remember being like that on holiday in greece in june.
I also have a decreased appetite. I feel hungry but then find i can only eat half of what's on my plate.
Was worried that these were all due to the cancer and therefore not a good sign. But feel more reassured now.
Hope it gets easier for you ladies who are suffering at the minute.
Love bev xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Helen, I, too, am getting my flu jab nextvweek. Tuesday is vpchemo blood test, Wednesday is flu jab and Thursday is seeing the Onc.re.next cycle (number 6). So I have a busy week next week (as well as working 2 and a half days). I'm going to be exhausted by next Friday. I did have a lovely surprise last week, though. After my melt-down at work last Tuesday and being sent home, I arrived home from seeing my sister on Thursday and found a delivery of a wonderful bouquet from work! It was a wondeful surprise! Wishing everyone few and mild se's, Barton.x

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

Hello, Ruth. Thanks so much for useful input. I don't have too much trouble with my hands, but both my thumbs have split. I find lots of Savlon and plasters on overnight work quite well for that. I haven't had trouble with my feet, apart from the 3rd cycle (I think it was). I felt like I was walking on burning coals mixed with broken glass and razor blades! 2 days of Vaseline and little white socks helped with that, luckily. I'm not a vegetarian (in fact I eat very few veggies), but I have noticed how awful coffee is for much of the cycle and much of the week off,- and I love coffee! The smell doesn't make me feel sick, though. As for hair, I haven't lost mine, but I have noticed it has thinned considerably, which has upset me rather. Anway, wishing you all the best. Your 2 and a half years on Cap.is an inspiration. Barton.x

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

Hi,Ruth ,thanks for the tips. Yes,I've gone off coffee and green tea can't stand them now lol. Strangely I craved a cold beer last night too!! Very odd. God it's like being pregnant without the bundle of joy at the end!
If I can get two and and a half years out of it I'll be over the moon. Even 18 months as I want to be 50 and have a SCD and Dr Who party.lol
Huge hugs,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I have been reading all your comments about Capecitabine. I have now been on it for two and a half years. To start with I was two weeks on and one week off. The hand foot syndrome was unbearable. I could hardly walk, the soles of my feet felt like I was walking in fire. After six months my onc decided that it had got too bad and out me on one week on and one week off. This has vastly improved the hand foot syndrome. The tiredness does get to me at times and i cant walk far like I used to. I find i often cant keep my eyes open in the afternoons and have to have a snooze. It is always worse towards the end of the week on as i guess it builds up in the body. My appetite comes and goes. Like you, Helen, I am a vegetarian and was really off what i would call sweet vegetables, parsnips, butternut squash. But I am able to eat them ok now.. Really dont like coffee any more, the smell of it makes me feel sick. Just wanted to tell those of you who are starting out on cape that it can get better and that doses can be reduced without detrimental effects. PLUS the added bonus of not losing your hair!!!!! Stick with it girls. Love Ruth x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Kaye,yes,I'm now think it is the cap and not the mets (hopefully!!) making me so breathless . I'll know from next Friday as week off and getting flu jab too,yikes!
My hands and feet are okay at moment,just really wrinkly on tips! and all my nails have split .
Take care cap gang,huge hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Helen I too am finding I get breathless and I put that down to the Cape.I only have to do a little bit cleaning and I have to sit down to rest,it seems to take me forever to do just one room and I too find it frustrating as I'm used to doing things quickly.I haven't had any sickness thankfully and am still eating like a horse,I was hoping to have lost some weight but no chance at this rate.The worst side effect for me has been hands and feet and my hands are really shiny today and a bit sore,hope they get better befor Wednesday as I'm due to start 4th cycle then.Hope all the rest of the Cape gang are ok.
take care all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Barton,you have put my mind at rest with the breathlessness xxx as was really worried as nobody else had mentioned it. I know what you mean about being tired. I'm finding it so frustrating being this tired and having to sit and rest after a bit of dusting!!
I'm just eating toast mostly as that's all I fancy with nausea which comes on in waves. Also I'm craving sweets ! which I never normally eat. And worst of all I can't stand the sight/smell of vegetables now. This is very odd as I'm a vegetarian !!! It's like the victor of Dibbly with the sprouts me trying to eat veg ,I'm having to force it down lol. Mind on week off I eat like a horse!!
Huge hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Katherine just reading your post, I'm not on Cape but do have slow release morphine and haven't noticed any change in appetite. Xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Katherine, no, I'm afraid I don't have trouble eating, but I do find I have to eat smaller portions when I'm on the Cap (I have to say, that's not a bad thing considering what I weigh!), but it gradually wears off after I finish the cycle. Barton.x

 

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

Hello, Cap gang, yes, I agree with tiredness! It's absolutely amazing! I can star out walking somewhere and within 2 minutes of starting I'm absolutely exhausted. My legs just don't seem to work at all. I say that I have 2 speeds at the moment - slow and dead slow, and I'm not exagerating. I get so breathless, too. I am sure it is the Cap, Helen, as, as far as I'm aware, I don't have lung mets. Just finished my 5th cycle last Thursday, and it is definitely getting worse as I go along. Trouble is, I get so upset over it quite often (very embarrassing when you are in Sainsbury's!). Good luck to the Cap gang. Barton.x

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

Hi Cap gang I agree with the tiredness,I have been more tired after this third cycle ,and I too get a bit breathless and I think it must be down to the Cap,even with the extra hour I don't feel any less tired.I think it could also be that I don't sleep very well what I would give to be able to sleep for a solid eight hours.
take care all
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,cap gang,I second the tiredness ,this cycle has been terrible. Has anyone else had breathlessness ,if I walk up the stairs you would think I'd run a marathon ,it's getting me really worried about the lung mets. My hubby said he thinks it's the cap as apparently I wasn't as bad on week off.
Huge hugs and stay strong,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh my .god, the tiredness! If I put the bins out I have to rest after. And some ladies go to work! I'm so ashamed of myself but you can only do what you can do I guess. Is anyone having problems with eating at all? I am hardly eating and am losing weight quite rapidly. It's not too much of a problem because I weigh 11st and am 5'3" tall (just!) but it's the discomfort of barely being able to eat that I dislike and the fact I've lost a great pleasure in life. Is it just me? I'm wondering if it is the morphine I'm prescribed rather than the Cape but I just don't know.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton

Thank you for sharing that and you didn't bore me rigid! Hopefully the cape will do its job well for you!
It's really interesting to see all the different side effects that everyone has on cape. Everyone is so different. Mine seems to be toe infections! ( don't ask!) and tiredness. I don't have the hand and feet thing but I started using udderley smooth from day one twice a day morning and night even when I'm on my week off. I think I have just been lucky so far ( if you can call yourself lucky in this situation!) that it hasn't materialised.
Jo x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Pam thanks for the tips I will ask about getting those on prescription as you end up spending a fortune on creams that don't always work.On the plus side they are a bit better today so hopefully they will be fine by Wednesday when i start my next dose ,I don't like the thought of having extra weeks off as you always think the little buggers will start playing up again.Hope all you ladies are doing ok.
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I use E45 lotion which comes in a pump dispenser. My skin is normaly quite dry but I was having to shake all the skin out of my trousers when I took them off and brush off the bed in the morning yuk!! I have used E45 for quite a while but being lazy only put it on the bits that show but now put it every where. I have sensitive skin but can even use it on my face and bald head where alot of ordinary face cream would make my skin erupt. I'm sure it has helped with the wrinkles to so cann't be bad!!

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

Bertie...just to say flexitol and diprobase are available on prescription.........flexitol contains high levels of urea which is thought to be helpful..but thick and greasy so can only really use it at night...forwhat its worth I use flexitol at night with vaseline on the top and then cotton socks both on hands and feet!xx

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

I was on Cape for 2 years before it started affecting my harmoglobin and platelet levels a few months ago. Initially had terrible peeling swollen and sore feet but hands not affected. My onc reduced the Cape dosage a little and put me on 6 pyridoxine (vitamin b6) tabs a day and diprobase cream (very sticky and thick so if you get it ask for a pump bottle). Use cream 2 times day and yes cotton socks at night. The combination really did
the trick. Also got given flexitol heel cream ingredients something f rom cows udders so bit of a smell. Some friends found udderly cream good but not strong enough to help me. Both creams worked like magic and the vit b 6 and peeling and flaking so much better.
Have now started on vinorelbin and no peeling but still using diprobase as it keeps my poor old feet soft!! On steroids for first few days each week which hype me up so sleeping a prob so any nice tips??

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

Thanks Bev for the advice this has been the worst side effect for me ,Vaseline and socks on tonight then for me.Hope it gets better soon as I start my 4 the cycle next week and don't really want another delay already had an extra week off on my 2nd cycle.I will let you know how I get on with Vaseline.
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes Kaye it happened to me earlier this year.

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

Yes Kaye...a common side effect I'm afraid! My doc recommended (and it works!) Vaseline smeared on feet at night and a cotton sock. You'll wake up with the smoothest feet on the planet hehe!
Works great for me and i posted it on here. Lot of the other ladies using it now too. Give it a try.
I only get the peeling on my left foot...right foot is fine. Very strange.
Let us know if it works. Love bev xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all has anyone had their hands and feet cracked and peeling ,I feel like a snake at the moment with skin peeling even though I'm putting cream on constantly.
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Jo. I've been on Cap for 5 cycles now - this is the first day of my week off of the 5th cycle, then it starts all over again next Thursday (30th). Blood test 2 days before, of course, and I've booked my flu jab for the 29th. If you are asking about all my treatments, though, it all started in 2007 with micro-calcifications and a lumpectomy and then radiotherapy. Move forward to 2011, and they found invasive lobular cancer in my left breast. Had mx and lymph node clearance, in which 19 out of 27 nodes showed signs of cancer. Had FEC-T chemo ( which it took about 18 months to get over properly) and Anastrozole. In July this year I started having period pains and bleeding even though I am 57, through the menopause and on Anastrozole. My GP, bless her, was quick off the mark and sent me for ultrasound and hysteroscopy, during which they biopsied what they told me was polyps. The day before I was due to go in for their removal, I was called to urgently go to the hospital and told it was secondary breast cancer. Was taken off Anastrozole, which had obviously stopped working, and started on Cap. Luckily, I think because I started bleeding, it has been found quite early and is only also in about 4 lymph nodes - 2 under left arm and 2 somewhere in my abdomen. After the CT scan after my third cycle I was told that I had significant reduction in all areas. Haven't had another scan since, though. So sorry about long post - I hope I haven't bored you all rigid.

Good luck and few se's to all the Cap gang. Barton.x

 

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

hi all

 

all you lovely ladies have been through it haven't you? 

 

moneck- hopefully cape will do the trick for you. you have had a lot going on !

 

helen - waving back to you! howay the lads!

 

barton - how long have you been on treatment etc?

 

im so pleased to have you guys to chat too. its such a lonely road at times!

hugs

 

jo x

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

Hello Jo, my met is also an unusual one it is triple negative & lobular in the abdomen just below right kidney. The fibrous tissue growing round it causes slight back-up in the kidney, so I have to get up to wee every 2 hours or less during the night as lying down eases the pressure.

Primary TN lobular tumour in 2000, Mx but only partial node clearance due to pre-existing disability neck/shoulder nerves which causes weakness in right arm. Followed by Fec & radiotherapy.

All well until May last year when we thought I had a virus then GP tried to track down what was happening - weekly blood tests for 8 weeks various other tests/scans & CT scan found it + 2 blocked nodes deeply under left arm. Luckily they got the biopsy from these.

I began on Cap this time last year but had an extended break through the summer with tumour markers stable though still very high!! I am now back on it.

Moneck 

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

Hi,jo,waving to fellow Geordie . Once a Geordie always a Geordie lol xxxxxxxxx
Hugs,Helen xxxxxxx