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Xeloda / Capecitabine - Your Top Tips, please?

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

LOL Barton Smiley Very Happy , I got used to it before so will again!! My GP says I am 'odd', with a laugh!!

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

Wow, Moneck! Not heard of that one before! It must be really uncomfortable. Hope you are coping with it. If I see that side effect on the next enclosed instruction list, we'll all know it's you! You'll be famous!Smiley LOL Best wishes, Barton.x

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

Hello, Jo, no, I don't have liver mets but I am on Cap. My mets are in my womb. Apparently it's a quite rare met of invasive lobular breast cancer. Trust me to be awkward! Glad you had a lovely day at the spa, and hope you have rested well since. Best wishes, Barton.x

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

Helen I see your a fellow northerner! I am from newcastle but live in essex!
Jo x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good morning all!
Hope you are feeling well this morning?
Helen - your story is a little similar to mine in that I was diagnosed in feb2013 with secondaries in liver in May 2014. None of the hormone treatments worked for me hence onto the cape. I've had a mastectomy but no reconstruction yet. I hope your treatment works for you! X
Katherine - thank you for your kind words and support. Its much appreciated and the welcome has been lovely!
Side effects - I don't have the ice cold feeling (yet!) I do have an infection in my big toes that I can't get rid of!
Am off to barcelona next week so I need to get rid of it by then. Gp tomorrow me thinks!
Best wishes jox
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Katherine,yes mine was a macmillians nurse. The biggest laugh is she's rang me three times since I've left the north tyneside trust and moved to newcastle trust to see how I'm doing LOL Shame she never bothered her backside when I needed her . My hubby thinks it because she's worried we will put a complaint in about her.
I think if you have SBC you are just left to get on with it by yourself and that's why I love this forum too as it's a lifeline .
Huge hugs,Helen xxxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen, I was so interested to read your post. I have a useless BCN through Macmillan who has not spoken or been in contact wit me since July 2013! I have no confidence in her whatsoever so have had no support in that area. It drives me a bit mad when I hear from everyone how great their Macmillan nurse is. I don't even know what mine looks like! Anyway, I'll get through this without her but she was rubbish when I did meet with her so now I'm just thinking I'm better off with the Ellenor nurses even though they aren't in contact with my Oncologist. It has left me feeling alone and unsupported which is why this forum has been fantastic for me. Sorry to hear you had problems too. I don't like to waste my remaining time complaining but I do feel a bit aggrieved that I haven't had the right support.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Joanna, welcome to the gang. Sorry you've had to join but this forum has helped me more than just about anything. I am sure it will do the same for you.

With regards to sleeping I am exactly the same as Helen. I'm awake from around 3:00am till around 7:30am when I seem to drift off for a couple of hours. I don't take sleeping tabs because I am just sick of taking tablets to be honest! I listen to plays on the radio as Reading seems too much but I seem to drift off listening to the radio. I like plays the most but each to their own.

I'm so glad you had a great reduction. Congratulations! It's such great news.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,cap gang,sorry to hear the SEs are kicking in for some people.xxxxxxx
Jo,I was diagnosed in June 13 with primary and bone mets. Went onto tamoxifen(didn't work) then letrozole ( didn't work)I found a new lump in primary and eventually got mastectomy after asking for a year for one. (June 14)Strange thing TM started to come down for the first time. Anyway they found tumour was now triple negative . I eventually got a scan as had been asking for one for a year and that found lung and liver mets and huge progression in bones.it knocked me for six at the speed of the progression and I blame my BCN who didn't /wouldn't report new lump for over 6 weeks to onc. I'm not at that hospital anymore.
I'm just hoping the cap will work as the only treatments I have are chemos now.
I do try the best I can to get on with life and set goals to look forwards too which helps. That's why I listen to audiobooks at night as the gremlins tend to come then. It is hard not to think of what the future holds and I do have total melt down days as everyone like us will do.
My doc gave me 6 sleeping tablets but doesn't want to give me more as they are addictive lol.mind they didn't work .
Oh,spa day sounds fantastic ,glad you enjoyed it.
Moneck I had the same feeling yesterday in my tum. Felt really sick and the feeling of diarrhoea but nothing,but like ice in tummy.
Huge hugs,cap gang,stay strong,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all, I wondered how long it would be before my odd side effect kicked in & got the answer this afternoon!! I only started back on cape on Monday and now I have the feeling of an internal icepack in my torso. It eases of a bit when sitting in armchair but then I nip of to get another drink or go to the loo & we start again. Also makes being hugged uncomfortable, It makes it difficult to know how warm I am, so lots of layers. My Onc. hasn't heard of this one, but has taken note of it.

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

hi barton

 

spa day was very nice thank you. had a facial and a manicure! feel soooo tired now though! do you have liver mets and take cape? 

jo x

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

Hello, Jo, I am so glad to read of your excellent results! Wow! Long may it continue! I also have trouble sleeping - not all the time, though. Seems to be random times when I am on the Cap. No rhyme or reason. Hope you enjoyed hyour spa day. Best wishes, Barton.x

 

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

hi all

Thank you kaye and helen for your replies. 

Helen - audio books sound like a really good idea - not sure what hubby will think though!

 

with regard to the sleepng issue - does anyone take sleeping tablets? also, how long have you guys had secondaries? i had original dx in feb 2013 then secondaries (liver only 2 small lesions) in may 2014. its terrifying how quickly its spread and i really dont know what to think apart from this isn't going to end well!

i can't seem to live for today as every one keeps telling me to do! How do you guys cope?

jo x

 

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

Hi Katherine

Thanks Smiley Happy.

I try to help as much as I can where I've had experience and this forum, apart from support, has given ME so much information about secondaries that I honestly don't think I would have learnt from anywhere else.  If I hadn't learnt from here that up to 30% of HER- BC can change to HER+ I would never had asked for a liver biopsy and would never have found out that after 10 years of being HER- I was now HER+.  This has then changed the treatment I should be on.

All down to ladies on here sharing their experiences and knowledge.  I also think of it as picking the brains of all the oncologists around the country, after all it's their approach to treatments that we often share which gives us more than just a second opinion!  Or the information to challenge our own oncologists opinion.

Unfortunately I had to learn the hard way about how certain chemotherapy regimes can damage the heart but if anyone wants to know about it I can talk for hours about my wonderful consultant cardio-oncologist who is pretty much the best in the country and all down to a referral from my oncologist and, NHS no less.  Having said that I think of me as one of his guinea pigs and giving something back as it is all under the umbrella of 'research', but I'm so glad he has helped me, he honestly has changed my life.

Take care

Nicky x

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

Hi all I don't sleep very well either and sleep pattern worse since taking Cape.Well I'm having a lazy day as I'm feeling tired not sure if that's down to the D injection yesterday or the Cape always seem to be more tired for the first few days after finishing Cape.
take care lovely ladies
Kayexx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,jo, I'm a terrible sleeper. I tend to listen to audio books and it helps me fall asleep ,when I wake up I put it on again. My poor hubby is getting used to it. I keep them on low too so I'm having to really listen to the words and this keeps your mind from thinking of the "gremlins " that tend to come into your thoughts at night. I manage to get an hour here and there but god I'd love a full nights sleep too.
Hopefully it may work for you ,huge hugs,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks bevlaar! Well the house is still standing after the hurricane blew through essex! I just wanted to ask if anyone suffers from insomnia? Really is a problem for me not sleeping. Anyone got any top tips? Any help would be appreciated. Well I'm off for a spa day with my mother in law! Hoping its warmer in there than it is outside! Love jo xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Welcome jo! Not the best place to meet new friends but like everyone else has said, we're all here to support each other.
I have lung mets dx in may this year and am on my 6th cycle of cape. Had my first scan in aug but nothing had changed since the May scan at dx. Been reassured by the lovely ladies here thats a good result as its stable. Hoping my next scan in 2 weeks will show a bit of shrinkage!
Hope your treatment goes well but feel free to voice any concerns here ☺
Love bevlaar xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you so much for your support! I'm a real technophobe so trying to post something is a real challenge. Hopefully I will get the hang of it eventually.! Jo x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Joanna,welcome to the cap gang. WOW! 75% that's fantastic.
Please never feel scared to post we are a very friendly bunch. We are all here for each other and give support,help and advice. Please jump into any thread. A lot of us tend to hang out on the bone thread even though we have mets in other places (mine are bone ,liver,lungs) we even have a laugh with each other!
It's an awful disease and nobody should go through this alone ,but sadly some do.
You will never feel on your own on here.
So welcome Joanna,and we look forward to your posts.
Huge hugs,Helen xxxxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you to Bertie and hilsy! I'm glad I took the plunge and posted! Am very happy with the reduction of the lesions! Have very little side effects with the cape just tiredness really. Luckily I don't have the hand and foot thing (yet!) . Am hoping to get as long as possible out of this ! Many thanks for replying! Jo x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Ah ok pam thank you....I had blood tests only last wed and they said results were great so that's why I was confused in a week for my eyes to suddenly do this will check thanks x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hilsy...not to worry you but if you are getting yellow whites of your eyes either from the drug or from whatever cause Id say besrt discuss with your team and get some liver function tests checked.xx 

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

Hi Joanna welcome to the Cap gang you will find plenty of support on here from all us ladies,so good to hear you have had such a good response with the reduction in your lesions.It is a horrible thing to go through but we,re all hear supporting each other.
Take care
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi to newbie!! and welcome and what an encouraging post thats great! Such a percentage in 4 cycles you must feel so boosted it's great to hear x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all
I'm a newbie! Have been reading all your posts for a few months now and have been to scared to post! Well, here goes! I have secondary mets to the liver and am taking cape. I am in my fourth cycle. Had a scan last week(I'm at the marsden) and my lesions have shrunk by 75%! I always look forward to reading all of your posts and love the way you all support each other. It's such a horrible thing to go through on your own! Joanna
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I have posted this before but I am on a 1 week on, 1 off regime. I had around 3 or 4 cycles of 2 weeks on, 1 off initially but now have been on Cape for 14 months. After reading that this regime seemed different to most ladies on this forum, I asked my Onc at the Marsden, Sutton. He said that trials had shown very little difference in results but SEs much better tolerated. I don't really know what to think but I have confidence in this explanation. Hope that all the Cape ladies have better days and fewer SEs xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all it is weird how we all react to this chemo.My hands and feet are a nightmare had to have an extra week off after 2nd cycle and one more day to go on third and ONC told me today when I went for my D injection not to take tonight's or tomorrow's as my hands and feet are now peeling .Don't know what she will do next week as she has already reduced my dose but she doesn't seem to be worried as my tumour markers have dropped from 194 to 35 so hopefully the Cape is doing ots job.hope everybody is doing ok on theirs.
Love
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all sorry to hear about the hand foot and tummy nightmares with this a lot of you get, and wondering how extreme people's fatigue is with it too? Everyone is so different on this it's weird!! Also, a bit random but anyone experiencing yellow eyes from cape? My liver mets can't be advanced enough for jaundiced yellow eyes but looks like it could be a capecitebine effect? I'm only on my third cycle but this week my eyes are really yellowing? X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Also, I asked my Oncologist if I could go on a 'one week off, one week on' regime rather than two weeks on and one off and she said no because Cape doesn't work well in that way so it wasn't an option. Just wanted to let you know. I'm not sure if it's true or if she's just not so up to date with it or something but just thought I would say to see if anyone else has heard this?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nicky, your hints and tips are invaluable! I don't need them all at the moment, thank the Lord, but know there is help on here from 'experts' like you! Thanks for taking the time. I hope I can help people as much in the months to come. Bless you. Katherine
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi CW17 and thanks for your post. I really feel bad with my SEs but the depression is very difficult. Odd times and periods of crying and that feeling of complete isolation is so, so hard. I have a lot of sickness too and have tried all the non sickness drugs but keep taking them regardless. I'm signed off work and have advised them I'm not coming back and I take my hat off to the others who work, brilliant people, no but for me I'm just not doing it. I simply can't. Anyway,thanks for your message. It does help knowing others are in the same boat even though I wouldn't wish it on anyone!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nicky, thanks very much for that tip! Very useful. Having a day at home today. Was sent home from work today as I started crying again when I was telling them about the DVT. Not sure about going in tomorrow. Hope everyone else ok. Moneck, hope Cap.keeps working for you now you have rejoined us. Barton.x

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

Just a very quick message for Barton (I don't want to get this off-topic):

I was told not to pinch the injection site too hard when you administer the heparin, that way it reduces the chance of bruising.  I know it has to be subcutaneous and the instructions are to pinch the flesh but by being very gentle I managerd to avoid getting any after a while.  I had some huge bruises at the beginning but got it down to a fine art of none each time!  Good luck

Nicky x

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

Hi Katherine, please dont put yourself down....i am on same dose as Bevlaar (I'm 5' 5" and 11 st.....thanks to treatment anmd steroids. i have my chemo..IV and cap on a friday and byMonday i am completely out of it...can hardly move...just feel really ill. I take ondansatrone and dexamethasone for a few days bit often have to takeextra anti sickness tabs. The fatigue is crippling and i get realy down nd depressed...so esay for people who havent been there to keep saying' be positive'. I am signed off from work at the moment...really dont know how people manage to keep working. I am about to have my fifth cycle of taxol/cap (skin mets) but what really wories me is that my Onc etc say i can only have 6 cycles plus another 4 of cap only...no one seems to want to go into what happens after that......

you are not on your own...no consolation i know but at least you know there are others out there who really do understand.x

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

hi all, haven't 'checked in' for a while and have just sen the convo re taking cap tabs. If its any help to anyone I asked my onc about the time gap as I was struggling to ft meals around the 12 hr rule...i sually tried to do 10 hrs. He said he washappy if i had a nne hour gap between breakafst and evenong meal. What i also find difficult is actually eating food first when i fel so grotty the week after my IV chemo and the start of cap tabs.Best wishes to all.

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

Good luck Moneck as you start your cape again.Im on my third cycle and had to have an extra week off on my second cycle as my hands and feet were so bad.I asked ONC about pyroxidine but she wouldn't give it as she said didn't think it would make much difference.It is interesting how their opinions differ.
Hope the rest of the gang are all feeling ok,I'm off to have my D injection this morning.
Take care ladies
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,meneck,welcome back to the cap gang. I do hope you have great success with it again and your feet and hands aren't as bad . I'm hoping it's kicking my TN aliens too.
Huge hugs,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good luck as you restart capecitabine....Its interesting to see the different onc views on pyridoxine....I asked about it...my onc refused and said no evidence of effectiveness!

Hope your markers reduce quickly and you start to feel less tired....let us know how you get on...interesting to hear of experiences of stopping and then re starting!xx

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

I am now a member of the Cape gang - I started taking it this time last year with TMs 1800 until April, then had a break to let hands & feet heal. By the beginning of May TMs were down to 600 & stayed so until Aug. and I had a great summer but they have  rocketed since to 1783 - no wonder I have been feeling so fatigued. Also I have to eat smaller amounts as I feel full up half way through a usual size meal, doing this limits weght loss.

 

Have started on cycle 10 - 3 tabs morning & evening. I have also been given Pyridoxine to help hands & feet from the start. Plus a large 'pump tub' of Diprobase.  

I didn't join the Forum until I was on the 'chemo holiday' although I did put up the tips I had been given. 

Had CT last week & get result when I see Onc. on 3rd Nov. so will find out what the triple negative 'alien' in the abdomen is up to!!

Best wishes to all the Cape gang,

Moneck

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

Thanks, Kaye. The injection site from yesterday is still bleeding slightly. I will have to stock up on plasters, I think. I'm really glad for you that your Onc has said it's OK to travel - you need a good Holiday!  Hugs, Barton.x

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

Hi Barton I hope you don't have to do it long,it's not too bad but after a while you tend to get a lot of bruising in the stomach area and I found injecting into the thigh was quite painful.Looking forward to my winter sunshine we usually go every year after Xmas but didn't think it would be possible this year but thankfully my onc has said it's ok.Good luck with your injections.
Love
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nicky, thanks for that. Sorry to hear of your nasty experiences and TIA (sorry, not sure what that is - I'll look it up in a minute-done. So nasty for you and I expect very frightening at the time), but glad you are being looked after properly. The new tablets sound good. I will ask about those next time I see her. Best wishes, Barton.x

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

Hi Helen ye looking forward to anice bit of winter sunshine.Sorry to hear that your back is still painful hope you are taken painkillers to ease it ,just take it easy.
Love
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helen, thinking of you with your awful back pain.  Hugs to you, too. Not brave in doing my own injections, it's just something I've never worried about (needles, I mean.). Now if you put me in a room with a spider, that would be a different matter entirely! We're all afraid of something. Best wishes, Barton.x

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

Kaye, so sorry to hear of your DVT after your chemo. 6 months of daily injections? Oh, my! I do hope I don't have to do it for that long. Hope all is OK now? A holiday in Tenerife after Christmas - lucky you! Hugs and good luck, Barton.x

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

Hi Barton, sorry to hear it was a dvt but really glad it was picked up before it caused any serious problems. I had a TIA last year caused by a heart problem (that in turn was caused by FEC chemo, long long story!) and was on these heparin injections for quite a while. I was wise to the fact that you can't have warfarin particularly with chemo but many cardiologists aren't aware of this so I'm glad your oncologist was on the ball. The injections are fine but you will need a letter from your doctor if you are taking them on a plane during the next 12 weeks, but if you are like me and grounded due to treatments, maybe this won't be a problem. The other thing is that there are a few newer types of anti coagulants being prescribed now by cardiologists in tablet form that don't interfere with chemo and don't need any of the blood tests that warfarin does. I switched to one of these, on the advice of my cardio-oncologist, some months back and haven't had any problems. If you wanted to ask your onc or cardiologist about them they are certainly easier to take each day. However if it's a short term solution having the injections they may just keep you on those.
Nicky x