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Xeloda / Capecitabine - Your Top Tips, please?

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

So sorry your feeling like this Helen hopefully it won't last and its some sort of virus I know when I'm generally unwell my back pain is always a lot worse. It wasn't long since your scans if I remember rightly so hopefully nothing could have changed so quickly. Hope you feel better soon xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,cap gang,how are we all doing?
my back has gone again and feel absolute awful. Had terrible breathlessness yesterday and got so upset as couldn't breath and had total meltdown.By tea time I had uncontrollable shivering ,teeth chattering the works,feeling dreadful ,felt really sick. But no temperature .went to bed back went into spasms and was in dreadful pain from back. Feeling a bit rough today but can hobble around at least and meds are keeping pain manageable .
Sorry ladies just feel like a moaning Minnie at moment as very scared that things are deteriorating quickly .
Huge hugs,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Cap gang hope we,re all doing ok it's been abit quiet on here the last couple of days.
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all hope we,re all ok this cold day best stay in the house today where it's nice and warm.
Teej thanks fingers crossed that it keeps working dreading having to go on Iv chemo,hope this one works well for you .xx
Cw17 thanks ,it's always worrying when you get your results but I was very pleased hope it keeps working for a long time xx
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I started Cape with Avastin on Thursday and very grateful to find all the excellent tips on this thread!   I was dreading going back to chemo (I've been on a trial drug which failed) but no side effects so far.

 

Thrilled to see your excellent results Kaye!  This is my third chemo, who knows, this one might actually do something for me - third time lucky?! Smiley Very Happy

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

Bertie1...so pleased for you. Lets hope we all get some of the good news you've had!! x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks, Kaye.  Yes, thanks, I'm doing well at the moment, although, I have to admit, dreading the return to the pills next Thursday - only 1 more week off now!  Still, I'm hoping the tiredness & breathlessness won't be nearly so bad on a lower dose as long as my Onc agrees.  Hugs to you and all the Cap gang.  Barton.x

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

Thanks Barton I was really pleased long may it continue,hope you,re doing ok.
Love and hugs xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Kaye. Sorry, only just seen your last post. What excellent news! I bet you are over the moon! Such a brilliant result after only 5 cycles. Long may it continue for you (and with few/manageable side effects)! Congratulations. Love and hugs, Barton.x

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

Morning everyone, it looks like I have answered an old post. Must be my chemo brain!

Anyway I hope it helps someone. Hope everyone who is getting results this week have good news and good luck Belinda on starting your chemo.

Love Sheila. Xx

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

Hi Ginette,

I just wanted to tell you that I was diagnosed with lung mets 3 years ago and they are still giving me no symptoms. Like you, I was very worried but I don't think about them now. I have since developed bone mets and liver mets. Liver over twelve months ago and thank goodness these seem to be under control. I am trying to just get on with life although it isn't easy. There are loads of treatments available.some may work some may not but there is always something else to try.

Good luck with your treatment and keep on the forum. You will get lots of support.

Take care, love Sheila. Xx

Member

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

Good news today after 5 cycles of Cape ct scans show NED in chest lymph node,mediastinal nodes resolved ,tumours in liver significantly reduced and the largest they could see on scan had reduced from 2.2 to 1.2cm since last scan in July,tumour on spine resolved and bone is healing ,couldn't be happier.Hope everyone is ok and good luck to those of you who have appts,scans and results this week.
Take care all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good to read the reminders about drinking loads. At work I always have a glass of water on my desk (and handcream) and I carry a water bottle in my bag ... But when I am at home I forget (must be the wine)
Member

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

Lol,oh Belinda you are so funny. Yes,a film would be good lol. I love carry on capecitabine lol. Oh ,matron .....
Xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen, I know, crazy what we all get used to isn't it? One day we should all get together and write a book, a film, Carry On Capecitabine....sounds a good title.
X
Member

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

Gold bars in the post to you Barton, melted down there should be quite a few ear-rings. :-)
Keep taking the pills everyone. I was on them from 2008 to 2012, I hope they work well for all. X
Member

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

Thanks Barton,I'll try yo drink more,mind I'm always thirsty ,my mouth is continually dry and drinks don't seem to quench thirst . On another lovely SE lol
Xxxxx
Member

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

Oh,that's an interesting article Belinda thanks. As if we don't have enough problems with false boobs and drugs ,now fingerprints lol. I'll be sent to guantalomo bay at this rate lol.
Thanks for gold I'll buy a fleet of planes and we can all go for a bit of Mickey magic xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Ooh, gold bars gratefully accepted, Belinda! Would rather spend on some nice jewellery, though (no real use for a private jet unfortunately!). Hugs again, and I'll hide you if they come looking for you. Barton.x. Sorry, just reread your post - you mean you are sending the jet to Helen, to avoid airport security I presume! I eould still hide you, Belinda.Smiley Happy Barton.x

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

Here's the story, BBC News link,
http://news.bbc.co.uk/1/hi/health/8064332.stm
Perhaps a letter as a precautionary for anyone concerned about their prints, it could save some time and no need to declare unless you have a fingerprint fail?
X
Member

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

Don't worry Helen, I think it's becoming a well known side effect which has come up as a security issue. Bit like hip replacements and detectors. Sending you some nice gold bars in the post, winks to Barton, you can buy a private jet with them if you like. ;-)
Member

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

Oh Belinda,I've just looked at mine and they are very faint! How odd,they'll not let me back in USA if my fingerprints go!! Yikes!

Kaye,great news xxxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Belinda - a good time to rob a bank then if you don't have fingerprints! Mine are just beginning to reappear after 5 weeks off! Hugs, Barton.x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes, Helen all my chemo nurses at different times, and my Onc, have said to drink lots - Cap is very dehydrating, which is a large part of the problem with the skin on our feet. So drink that water till it comes out of your ears (sorry- might make yours worse!). Hugs. Barton.x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh Kaye, that's wonderful news! And your markers are still dropping - wow! That is very reassuring for me to know from someone with first-hand experience that a lower dose is working just as well.. Thanks very much for posting. Hugs. Barton.x
Member

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

You can eventually "lose" your fingerprints on Cap, mine are very faint to non existent.
X
Member

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

I was never told that helen when i was on it although its always a good idea while on any chemo to avoid dehydration. ....and to help flush it through your system as quickly as possible! Xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you ladies,you are all stars . Do you have to drink more while on cap? I haven't been told that !
It's so strange that hospital all don't sing from same book when it comes to advice,care or just treatments.
Huge hugs to all the cappers and our ex capper bev xxxxx Helen
Member

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

Hi Barton I have had 3 weeks off Cape an extra week for a really bad cold and an extra week while on holidays as Onc didn't want me to be ill while away,I had a Ct scan last Monday and get the results on Wednesday everything crossed for that.TMs after 5th cycle had reduced fom 194 to 18 so hope this is a good sign,was also on reduced dose started on 3500 and had it reduced twice because my hands and feet were so bad,am now on 2500 per day since the third dose and my TMS were still dropping .
Hope all you ladies are ok
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen..not on Cape anymore but i had exactly the same with my fingers while on it. All wrinkly on tips (yes like too long in bath) and when you pressed on them they stayed dented! This lasted for about 6-8 weeks after I'd stopped it too . Xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen (again - sorry!), regarding ironing - I was so tired a few weeks ago that I really let the ironing pile up. So much so that I was getting depressed just thinking about it. In the end I Googled ironing services in my home town and found a very nice lady who does it for me for a pound an item - so well worth it! She did an excellent job and had all 17 items returned to me the next day! She picks up and drops off, included in the price. Hope that has given you an idea! Hugs. Barton.x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes! Was just noticing that the other day, Helen. Strange wrinkly look, and that was after more than 4 weeks off! Just part of the dehydrating effect of Cap I suppose. I suppose thats why we are supposed to drink so much. Hugs. Barton.x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen I am working on that one too without much success I might add so the answer to that is NO it's not classed as fiddly just a pain lol Macie x x x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Macie,no mine aren't sore but it's the loss of sensation in them that's annoying. I keep dropping things too! I don't pick up anything that can break in shops now!! Is ironing classed as fiddle job lol. I wish I'd get mine to do that lol
Huge hugs,Helen xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen my fingers are exactly the same they are just very wrinkly with what look like little splits in them but are not sore although I have been left with severe peripheral neuropathy following paclitaxol chemo 2 years ago so that doesn't help,but a good enough excuse to get hubby to do all the fiddly things love to all Macie x x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

CW17, I can't understand why you are only allowed 10 cycles either. The top consultant at the Marsden told me that he has ladies still on Cape for 3+ years. I'd definitely query that when the time comes, the SEs are not nearly as harsh as IV chemo. Never heard that they can be life-threatening, but I'm no expert. Best of luck at your next appointment xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Barton xx
Just a quick question for cappers. Does anybody else's fingers go all wrinkly on the ends like too long in bath. Also if I press them together skin does not pop back but stays dinted especially on thumbs,very odd sensation.
Hugs Helen xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen, I'm absolutely amazed that you have lasted so long on such a high dose! Good for you, but sometimes enough is enough - ask to take a break if you need one! I expect a combined effect of both your medications can have a more severe effect on you - I'm not surprised you are breathless! Hope your ear/ears is/are much better. Hugs, Barton.x

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

Macie, wow! 13 cycles (& pam01, even more, I think - sorry, with chemo brain can't remember all the details!). To answer your questions, yes, I am almost completely recovered. Still a little breathless, and can't walk as far or for as long as I used to, although a very short sit down of literally just a couple of minutes revives me for a while longer. Trouble is, there are never as many seats around as I would like! I am also 5feet 2inches, but weigh a lot more than you (hence the higher dose I assume). I'm thinking of asking for 1500mg twice daily, but would settle for any reduction basically! I have no idea about progression or not I'm afraid.  I had a CT scan in November and was told no progression then, but that was before my break. I haven't heard if I will get another before restarting on 22nd, and I don't think Onc has asked for chemo markers to be done on the blood test form I was given to use for the blood test 2 days before that appointment. I'm a tad worried about that. There is still time for a CT scan appointment letter to come through, though, before then but I'm not counting on it. Good luck to you, and take care. A lot of people on Cap have had chemo breaks, so go for it, as long as your Onc agrees. Thank you for your good wishes regarding starting again. Hugs, Barton.x

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

Pam01 thank you for your reply how I envy you I love cruises but haven't been able to go for quite a while but hope to go again in the future.I value your input and remember I followed your posts as herbgarden and took on board a lot of information from you.
My T. Markers have slowly increased over the last year from 25 to 69 but oncologist doesn't seem concerned about this.My hands are ok feet cracked and bleeding but still coping with creams and Vaseline.I am going to take your advice and have a break when I go away.I hope you have a wonderful cruise and pray the cap keeps on working for you and all the ladies that are on it love from Macie x x x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,ladies,I've read that a reduced dose is just as effective .its strange how we are started on such a high dose.4600mg for me. My breathlessness is getting much worse the more cycles I have. But I've read denusumab gives breathless as a SE too. So I'm not sure who the culprit is!?
Hugs,Helen xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Macie I had a cycles break in November both because of sore feet and hands and because I was going on holiday.......My hands and feet weren't completely back to normal but much better.........after such a long period on it I am finding I need an extra week off it particularly for my hands every 2 or 3 cycles (but didnt have timeoff at all for first 17 cycles!!)....my markers tend to stay the same or drop a little when retested before restarting but I think everyone may be different and it does feel like younhave to try a break ...maybe just an additional week or 2 whilst you are awa...and see if it has any effects on markers........since that holiday I have had 2 cycles and then took an additional week off.....will have 2 more cycles all being well and then another break cos i have a cruise booked!.......i dont have problems with breathlessness fortunately. 

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

Hi Barton I was very interested to read about your experience on Cap. I am on 1500 x twice a day and am on my 13th cycle without any breaks yet but am thinking of asking for one soon as I want to go away for a few days. I also am very breathless but have always thought this was to do with lung mets but it seems a lot of ladies on cap are breathless so could it be one of the s/e.I have always been on this dosage as told this is right for my height and weight 81/2 stone and 5feet 2ins
Can I ask if you feel completely recovered after you long break and do you feel any worse for not having it or that there has been any progression whilst you have been off cap.I hope you do well again back on the treatment please let me know how you get on love from Macie x x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello. Just remembered that I downloaded the article as a. pdf document. Can't work out how to link to it, but on Googling Dose Adjustment Xeloda, the follwing came up: mbcn.org/images/uploads/DoseAdjustmentCapecitabine.pdf    If you are interested, it might be worth downloading this article. Hugs, Barton.x

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

Hello Cap gang! Haven't posted for a while as I'm still on the 6 (7, if you include the rest week of Cycle 7) week break given to me by my Onc, but have a question, please. I know you lovely ladies will help with this. When I go back to see Onc again on 22nd, I hope to start Cycle 8 of Cap as it is currently working for me. However, I suffer from severe tiredness and breathlessness (slowly building up over the 7 cycles) on the 4000mg dose daily (2000mg twice a day), so I was wondering how many of you have had dose reductions? And if you have, has it had any effect on the effectiveness of the Cap (ie mets returning faster than your Onc would have expected)? I recently read an article about an American study (followed a link on the Breastcancer.org site - the forum, the Xeloda thread- sorry, can't post the link as there are 145 pages in that thread!) that says a smaller dose doesn't make a difference in the effectiveness, but that it is the constant, regular attack that does the trick. I suppose I am just asking for a bit of reassurance that all should (I know there are no guarantees!) be well. Love and hugs, Barton.x

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

It seems to me there are at least 2 schools of thought with regards to this......some oncs seem to use cape for as long as its working...with or without dose reductions and short side effect breaks......I am coming up to my third anniversary on it in about 4 weeks...but have scans first so somewhat apprehensive to celebrate this!.....other oncs use it for shorter bursts but with the possibility of returning to it at a later stage..........yes all chemotherapy has potential life threatening side effects...but capecitabine in general has fewer than many others...and many of the side effects which stop treatment are not life threatening as such but extremely uncomfortable and or inconvenient.....the reason for the different approaches is because no one knows which is best in terms of prolongation of stability and/ or survival.....but your onc should be taking your views into account.........

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

Sorry..on catch up replying to different posts and getting it all wrong. The cape cycles post was in reply to Stillhere and the palmar platur post was in reply to elly. So sorry for confusion.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Chemo nurse gave me acream called pliazon..slap it on and wear socks. Hasn't prevented but is under control. Vaseline is supposed to be good to help prevent heel cracking. Good luck.x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

So pleased for you...cant understand why my onc insists I can only have 10 cycles?? (I have skin mets). Seems the side effects are life threatening?? Am I wrong to think this is better than the beast returning again to threaten my life? xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good morning ladies hope we,re all well today,still anxious abou my scan results on Wednesday trying to keep myself busy till then..
Helen my feet also hurt more at night so I constanly cream them through the night ,but sometimes I stick them outside the bedclothes to try and cool them off.
Hope everyone has agood day
Take care all
Kaye xxx