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Xeloda / Capecitabine - Your Top Tips, please?

BJR324
Member

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

Happy New Year to everyone.

im on my second round of cape day 8 but have felt really rubbish the last few days, I’m not sure what to do seeing onc on the 10th Jan after second round completed and scan after 3rd. I’m on 2150 twice a day plus morphine, antisickness, and vitamins.Side effects I’ve expereinced are sore cracked thumbs and feet, even with applying creams, sore mouth and poor appetite and nausea.

I feel so fed up as if I stand up to do anything I feel very wobbly, and unwell. I’m more or less housebound as I don’t ever seem to feel well enough to go out. Energy is nil!i look appalling, I looked at photos taken over Christmas and couldn’t believe what I looked like. My skin, particularly my face is a horrible shade of grey and yellow!

Any advice on what to do would help, I see on here a lot of ladies continue on cape for years, but I’m not sure I could stay on it as I feel it is dominating my life, I feel so fed up and worn out I don’t know what to do.

We have no secondary BC nurse in our area but I have a good palliative care nurse. The chemo nurses are brill too but never really sure when to ring them, as I don’t want to end up in hospital.

sorry for the long post, but felt I just need some friendly advice.

xx

ramade
Member

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

yes, Happy New Year everyone. I also did not see the New Year arrive until 7am.Who cares, I watched them on the News this morning xxx
Carolyn52
Member

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

I toddled off to bed after the James bond film with intentions of watching the London fireworks on TV but fell asleep with remotes in hand to 3am and cold cup of coffee ..Oh dearie me xxxxx
Lynnq
Member

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

Happy New Year to everyone.  Hoping for the best for all of us and continued good results from Cape 

 

Life certainly is different Carolyn.  I don’t begrudge anyone having a good time but I am off to bed soon and hoping that the fireworks don’t wake me up at midnight, if I wake up it takes me ages to get back to sleep, but then a lazy day tomorrow so can catch up then

 

 

 

Carolyn52
Member

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

Happy new year to you peachy warriors. We should all be popping our pills at twelve to celebrate them ! I'm not going to risk anything more than tonic water tonight although hubs has a nice glass of port and Stilton in front of him. Oh how our lives have changed.
Enjoy ladies xxxxxx🍷🍷🍷🍷🍷🍷

Lynnq
Member

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

Remade and Carolyn I do agree

Had some family photos taken over Christmss and I look awful.  These up to date phones with the cameras etc are good technology but too good at times.  My eldest granddaughters were snapping away.  Then they showed  me the photos - yikes.  Hope they don’t show them to anybody else

 

Hope your biopsy results are good Ramada, when will you get results?

 

 

Carolyn52
Member

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

Oh Ramade
I totally agree with you about the mirrors ..since secondary I have stopped hilighting my hair in fear of loosing it so I'm an old grey bag lady now ! I tend to wear just leggings, boots.and baggy jumpers etc for ease. .no smart clothes these days but comfort to put on and off really.
Oh well have let our standards slip these days but hey hoo let's hope CAPE is doing its job.
ramade
Member

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

hello all, had a biopsy in neck yesterday to see if things had changed. What was worse though was going down in the lift afterwards and having that huge mirror which you can't look away from, already pale and shaky i saw how terrible i looked. Can't they change the lighting in lifts? Every blemish shows lol

just thought i'd share this.

Ramade

Lynnq
Member

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

  Hi again Carolyn.  I have just finished my tablets for my sixth cycle, so starting my 7th cycle..hopefully ..next Friday.  My fingers are a little dry but the udderly helps a lot.  I also suffer from nausea but usually just one occasional anti nausea pill sees it off

 

do you make your own rice pudding or do you buy ready made?  It may be worth a try for me, better than taking the pills

 

I take 2000 x 2 each day and so far have not needed a reduction in the dose 

 

hope everyone one had a good Christmas.... ours was quite busy but lovely to see everyone together...had a rest day today and looking forward to another one tomorrow 

 

take care everyone 

 

 

Carolyn52
Member

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

Hello Lynn
You are at the same stage as me with cape. I restarted them last Sunday after the week break.feeling a big sicky after taking them morning but don't want to get in the anti sickness pill routine either as I take enough pills. Find tin rice pudding quire good for settling down a iffy tum. My platelettes are still low so still on small dosage too.
Keep in there with the peachy pills ladies if you can.
Lynnq
Member

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

Hello again everyone. I have just finished the first week of my sixth cycle 
And am pleased to say that my TMs continue to fall and my SEs aren’t too bad.
Had a bit of a scare when they ordered a brain scan. Have been having double vision on one side for a few months, saw optician who found nothing. Started to get sore more around my eye than the actual eye so saw GP who referred me to optometrist who ordered a brain scan. Received results yesterday - nothing sinister just a weakening of a muscle, quite common in short sighted people.

I am very relieved - even when being told that my TMs etc were falling still got very anxious.

So pleased to hear your results Carolyn and also Stillhere and everyone else.

Hoping that you all have a good Christmas and a peaceful new year. I was dx just before Christmas in 2012 never thought that I would see 7 more...and still counting

Stay well, take care and raise a glass to our NHS

Xx

Carolyn52
Member

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

Happy Xmas ladies ..have a good one and try to forget the secondaries and let the peachy pills do their job. Just back on mine after a weeks break.
So back on choc muffins at 8 ish mornings to compliment the pills. .
Just watching a Xmas film munching on a cheese scone. .yum ..seem to eat more savouries these days! 🍪🍔
nicky08
Community Champion

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

Woohoo Carolyn on your fab scan results. You can enjoy Christmas without that cloud of scanxiety hanging over you 😘

Hi to all other Cape crusaders, wishing you all great results from the peachy pills and a happy Christmas .

Nicky x

Ps great news from you as well Stillhere xx

Carolyn52
Member

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

Hello still here
Lovely to hear from you ..been quiet ! Yes I was disappointed to have to reduce cape as I was getting no side effects but platelettes dominating dosage at moment. I have blood spots all over arms and legs but no one seems bothered and they don't itch or hurt so apart from.vanity ( at 66 not bothered) .
Well just got 2 pressys to wrap and finished for Xmas. ...got a kindle case that hasent arrived online yet but not bothered. .think it's coming from ching ching land !!
LYNDYLOO
Member

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

Hi still here

Great news long may it continue.

Linda

Stillhere
Member

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

So pleased for you, Carolyn! Stable is great so have a lovely Christmas, when else can we overindulge just a bit? I'm not medical but have read lots of forums, Cape seems to be effective at lower doses and my hospital does 1 week on/ 1 off. They say they get the same result.

 

Just had my 3 monthly scan result, I'm stable Mabel too, phew! My trial has worked since April 2016 so I'm feeling blessed x

LYNDYLOO
Member

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

Morning Melinda

Just thought I would reply to your question about tumour markers. When I first started to get tumour markers done in 2009 I was told upto 30 was the norm. People who don't have cancer can show up
markers. 63 is still low though.

Good result regarding scans.

Linda

Carolyn52
Member

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

Hello Melinda
I have never had tumour markers so don't really know much about them .... yours sound quite low though but I'm not a doctor !
At least scan and results out the way now for Xmas. ..I shall probably treat myself to a gin and tonic or baileys on Xmas day ...just the one !🍷🍹
Melinda
Member

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

Carolyn that’s such good news, I hope you are pleased .  I had results today too, all stable and he said my tumour markers were 63, does anyone Else know their markers?  I was really hoping that the cape was kicking but and shrinking everything but I know I should be pleased with stable.  The onc did say that this chemo didn’t cross the blood/brain barrier, I thought it did but must have read it wrong. 

 

Hope me everyone is doing well, you are all so amazing x

Carolyn52
Member

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

Hello ..scan results were in today ....ssme as 3 months ago ..no change so happy with that as platelettes still low and therefore peachy pills dosage reduced. Only on 1200 x 2 daily now ..would prefer the stronger dosage but platelettes won't allow. Just had yet another lunch out so feeling like porky pig in my chair ..oink oink 🐖🐷
ramade
Member

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

Hello Carolyn, oh what a nuisance for you, hopefully a short break will stop this. Good luck today with your bloods.

Ramade x

Carolyn52
Member

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

Hello Ramade
For the first time after 6 cycles. .I had an "explosion" yesterday. .so I was glad to be at home and near the loo ! I have imodium and allow 3 visits then if it doesn't stop pop the pill. I'm off the peachy pills to Sunday. .seeing oncologist Wednesday so hope my platelettes and bloods are good ..for another cycle .
I find these pills really good ..no sore feet or hands either. Did feel a bit sicky but I ate too much !
ramade
Member

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

Hello Wee Vee, i am on day 10 of my first cycle and have no side effects yet, i was told that if i got diarrhoea to inform the hospital but to take immodium and they would only stop the treatment if i had severe diarrhoea even taking immodium. i tend to lean more towards the constation side of things normally but we'll see. they can give you cream for sore hands and feet, avoid wearing socks as much as you can.

i do hope this helps and good luck to you. i feel this treatment is already working for me and it is fair to say i have had a long line of failures so i intend to try anything rather than stop. you have only 3 days to go of this cycle. i am off it for 2 weeks instead of 1 because of Christmas and the onc said that wouldn't make any difference. o xxx

Ramade

wee_vee
Member

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

Hi, I am on day 11 of my first cycle of capecitabne.  All was good until yesterday and now suddenly all the side effects have kicked in.  I woke up last night with diarrhoea which has now settled, have sore hands and mouth ulcers.  Anyone else had a similar experience?  My oncologist told me to phone the chemo helpline if I had severe diarrhoea and they would probably advise me to stop but instead I have reduced the dose for the last few days to see if that works.  Just wondering if anyone else has had a similar experience?

ramade
Member

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

Hi Carolyn. my daughter has sent me some Macmillan/ Greene king recipes for Christmas for people who have difficulty with eating or swallowing, they look really scrummy, i will be getting hubby onto that job pretty soon. I have to physically hold open one side of my mouth to put food in but then it,s fine. Good luck with your scan results, it's not the time of year to have that sort of worry.

hugs

Ramade

Carolyn52
Member

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

Thanks bJr .very sensible having the port fitted ..when I had primary I had a picc line but it was so uncomfy. .think these new ones are more comfy and designed for long term use.
Think hunt the vein is the worst bit of scans etc.
Hope u doing OK with your treatment too ....xxxx
BJR324
Member

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

Hi All

i often read that ladies have problems with needles, bloods taken etc, , which is what I had for several years, however earlier this year I had a port a cath fitted, its brilliant and I don’t get problems at all. 

A lot of hospitals don’t offer the option unless you asked, which I did and they arranged to have fitted quite quick. (I only learnt about it from a fellow chemotherapy patient)

Contrast for scans go in, bloods out and chemo in. Once used a small plaster on and off I go.

over the summer I as able to swim etc as  all that’s visible is a small bump on my chest and no external tubes.

The last straw for me was when they had to take bloods from my feet, very painful and slow and bruises horrendous.

im sorry if you already know about this but I didn’t so thought might be worth a mention here and help someone else having similar problems that I had.

 

good health to all. X

 

 

Carolyn52
Member

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

Hello Ramade
Yes same symptoms. Apples are out. ..I do eat bananas but otherwise it's a nightmare eating with a dead face. I mainly eat cuppa soup and tinned rice pudding for ease ! I don't get headaches or any pain though. Just fuzziness and a bit confused ..can't believe I finish chemo pills Saturday again for a week. .the 2 weeks regime goes so quickly .
I'm still black and blue in my arms from hunt the vein for contrast on the ct scan last week. Hope she finds a good vein for blood test next week.
Not sure when I get scan results ...
Well think I have Xmas pressys sorted ...just a few money wallets to make up ....not much food needed as out for Xmas dinner so won't be one of the many pushing 2 trollies round Sainsburys. .do they eat all that food or does it end up in the wheely bins?
ramade
Member

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

Morning all, hope you are all coping.

Carolyn, thanks for your reply i thought that might be the case with the brain. They are not talking about wbr yet but they are going to biopsy the neck lump because i have to physically hold my bottom lip down on the left in order to eat. Whole apples are out as i'm sure you've found. i think i'll have to ask my daughter to mash my food up as she does for the little ones lol. how are your twins by the way.

hugs Ramade x

BJR324
Member

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

I’m a week in on first round of peachy pills and apart from feeling slightly nauseous in the morning, I’ve not been too bad. Liver pain has started to ease off as oramorph kicks in. Nurse said to maintain pain relief not try too get on top of it once too bad, so at the moment that’s what I’m trying to do.

still waiting for biopsy result.

Is this normal, whatever is normal, start to cape. I’m not sure what to expect!

good luck to all and stay well. X

Carolyn52
Member

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

Oh Ramade
You have the same symptoms exactly as I do...obviously you haven't had the wbr treatment either.
They did say that cape takes a lot longer to work on the brain than liver and lungs .so fingers crossed that it does it magic soon.
ramade
Member

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

Hi all,hope everyone is still coping and having some success with the peachy pills(Carolyn thankyou)

Cape is going ok for me so far after first few days. i have cancer in neck,brain,brachial plexus and bones.

my Face is numb all down left side and i can't open my mouth very wide so eating is difficult. i have also lost balance so can't be let out on my own. So i'm wondering does anyone know how long cape takes to work if indeed is it working on me. Trying to stay positive.

hugs to eceryone

Ramade xx

Carolyn52
Member

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

Hiya Melinda
Phew you have been through the mill with wbr ..they do say its tough. My oncologist says that cape works well on liver /lungs but does take longer to hit the brain ..and there is about only 20% of it doing that much . Very few chemo do break through the brain lining though.
Peachy pills crusaders ...keep taking them .
Melinda
Member

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

Yes,  I think I had them for a while but never had a scan on brain until they thought they saw something on my spine and then did an MRI.

 

I had whole brain radiotherapy,  It was a very easy procedure and very quick but I have never felt so low in my life and I really didn't know how to cope for a few weeks afterwards but thankfully with a very supportive family I came through.  I just hope that cape can help, I wasn't aware until reading your post that there are chemos that can reach the brain !  I really should ask more questions but to be honest I am so scared I just want to get out as soon as I can. I had the WBR in February this year. xx

Carolyn52
Member

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

Hiya Melinda
Gosh didn't realise u had brain mets too ..how long ago? And did u have treatment ? Apparently mine are quite rare. .only affect 5% ..trust me to get them.
Melinda
Member

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

Carolyn,  you have such a lovely sense of humour with all you have to cope with :).  I did have brain rads and I must admit to "going along with it" and not putting much thought into the implications.  Looking back I should probably been more questioning.  Still its done now,  I just wanted them to make it go away !!  I hope you are having a nice day and managing lots of on line shopping treats for yourself and family .

 

Hugs and positive thoughts as we wait our results xx

Carolyn52
Member

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

Hello Melinda
No I don't mind sharing the brain mets thing. The ct scan missed them in March when I started getting a numb face ..in July I had a mri brain scan and that's where they were found. I declined whole brain rads as with oncologist it was decided that it wasn't good odds. ..oncologist is hoping that cape will hold things. I got a paralysed left side of face ..no pain just hard to talk. I get a bit dizzy and balance problems but I can still keep up with conversation and online shopping !
Hope this helps
🐸🐸🐸🐸
Melinda
Member

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

Hi Carolyn,  it sounds like we were scan twins last night !  I still panick after a scan even after 3 years of it.  I will now be a hopeless case until results day .  I really need to keep it together so I don’t ruin Christmas for my  family, I just worry about getting stocking presents muddled up and wrong labels on parcels. I suppose it’s keeping my mind busy .  I hope you don’t mind me asking but do you get many side effects from your brain mets ?  X

Carolyn52
Member

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

Hello Melinda
Hope your scan went OK last night ...mine wasent too bad as I had 2 x brain and 1 x body. ..about 20 minutes once the cannula was in !
Apparently they took 1000 images. .so that's why it takes so.long for results. .aagh .
Carolyn52
Member

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

Well ct scan all done. 3 attempts at vein though for contrast. Results 3/4 weeks . Think I've got so used to results now ...I'm not going to fret too much!
☺☺
george
Member

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

Sorry, meant to write Lyndy (duh)
george
Member

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

Good luck with your scans today, Melinda and Carolyn.
Glad that Tamoxifen is working for you, Lynne; it is much easier that chemo. I would like a little break from Cape, but don't want to tempt fate by stolpong it.
Hope Cape continues to treat you all well. Have a good week everyone

George 🤗
feelthefear
Member

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

Hi Melinda.

I was convinced my last scan would show something going on with the tissue around my ribs as I had numerous lumps that weren’t there before. I’ve no idea what they were but they didn’t show up on my ct and they’ve disappeared now.
Also, stress can play havoc with your lymph nodes and so can meds. When I had my primary diagnosis last year there were a cpl of lumps on my neck which also disappeared.
Carolyn52
Member

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

Melinda
Sending vibes to you tomorrow too ..agh hunt the vein for the contrast is a pain in the bum too !! Hope the radiographer is good with it.
Linda
Glad tamoxifen is being kind to you after the taxol u had to endure ...
Melinda
Member

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

Caroline my scan is at 6 as well.  I will be sending you positive vibes.  I really think a scan results ban should be enforced in December!,  I always get December flaky brain without this added stress.  Good luck tomorrow x

LYNDYLOO
Member

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

Evening George

So pleased cape is still working well for you. When I was on cape from October last year till July I gained about 10lb in weight. Mind I was always starving not easy to diet on the peachy pills as you have to eat reasonably when taking them. As you know I am now on tamoxifen which seems to be going OK. Weight has now started to come back down thankfully.

Carolyn good luck with your scan tomorrow.

Linda

Carolyn52
Member

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

Hello Melinda

Snap we are on the same stage. .I've just started cycle 6 too and just looked my scan is tomorrow night at 6pm too. ..aagh results in just to spoil Xmas for us !
I have been oiling my feet and hands but no problems as yet. ..I use Johnsons baby lotion ..cheapskate!
I cant answer about your lumps ..maybe a blast of rads would help ? But I would think cape would do something soon.
So fingers crossed we can both cope well with the peachy pills ..I'm only taking 2 big ones and 2 little pills now twice daily.
Melinda
Member

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

Hi Cape Ladies,

 

So glad to hear that on a whole you are all managing well on cape and getting good results and good luck Carolyn for your scan on the 8th.

 

I am now on my 6th round of cape which I have found very easy to tolerate and none of the side effects that I was expecting.  I have a scan tomorrow, which is the first one since starting on this chemo.

 

My worry that is keeping me awake at the minute is that I have just found a few lumps in my neck,  I am sure that they haven't always been there and have just recently developed.  Do you think this will be an indication that the Cape is not working on other mets ?  The constant worrying is really getting me down.  If the cancer has spread to neck lymp glands/nodes can they be treated from anyones experience ? 

 

Big hugs to everyone waiting for results and feeling poorly xx

george
Member

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

Hi Carolyn

I don't want to worry you but when I first started Cape, I was 60kg. I am now 66kg🙄I did ask my onc if the Cape was to blame- he said no so it must be the fact that I am eating more, especially things I fancy. ( just finished a donut). I do try to do mild exercise every day to no avail regarding the weight loss.However, I am not too worried about it as, when I had an inflamed gall bladder, I lost a lot of weight very quickly which was scary. My philosophy now is everything in moderation. Finish cycle 21 tomorrow so I will be having a few cheeky glasses of wine.
Go and enjoy a pizza😂

George 🤗
Carolyn52
Member

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

Hiya George
Our wise owl with cape pills. I've just started cycle 6 yesterday. .feeling starving now back on them though ! I was doing a jigsaw app on the kindle earlier in the night ...it was a picture of a pizza ..I almost felt I could eat it . .Glass and all. Ha ha.
I'm now on a small dose 1300 x 2 a day. ..
But joking aside I must watch what I eat or I'm going to be a heiffer ....
🐽🐽🐽