Xeloda / Capecitabine - Your Top Tips, please?

[BJR324]

Hi All 

Big day tomorrow see oncologist to discuss level of cape and side effects! I’ve spent the day snuggled up in bed  with a hot water bottle as felt really unwell and it’s my week off! 

Tomorrow is also our wedding Anniversary 38 years can’t believe it, not sure there’ll. be much celebrating going on. Never mind hope I’ll feel better. 

No scan results as that’s not till after 3rd round. 

Keep up the good work cape crusaders, it really helps me to hear about others experiences! And I don’t feel so isolated.

Bel xx

[Carolyn52]

Ramade

My side effects are exactly the same as we are really a mirror image of each other ...
I'm on my week off now ..don't feel sicky and eating like a gremlin today and yesterday. ..mmmm let's raise

Raid the fridge again ! Oink oink 🐖🐽hope everyone else is coping ..it's a wonderful regime if the body can tolerate it ladies ...
🍰🍟🍫

[ramade]

Hi Bob,Bel,Carolyn and all on Cape. The only side effect i have had so far are finger tips peeling and cracking and very sore, hospital have prescribed me some cream. i know that Cape is working for me because i have obvious lumps in my neck which are going down, also had blurry left eye, and losing teeth on left hand side, the fog is clearing, still numb face though but that is from brain. it is a drug which seems to work on a lot of people though so worth pushing through. xx

[BJR324]

Hi Bon and everyone else

i was very poorly before going on the peachy pills(as Carolyn calls them) but once into them felt better. I’m just about to finish second round, whilst I feel better than I did before taking Cape, the side effects can take a bit of getting used too and managing.

worst for me is fatigue, and dodgy tummy!!! I think it’s a case of getting dose right from what I’ve read on here. However I started on 2150 twice a day, but have lost a lot of weight so hoping that the dose will be reduced and I will find more manageable this week after seeing onc. 

im not sure what others think but I far preferred having one dose of chemo every 3 weeks intravenously than all this pill taking! 

Im on to 17-18 pills a day  now and can’t get my head round it all. Luckily my OH is brilliant and managing me.

Hoping for a nice day today as we are expecting 2 new goats next week, pandora and Tiffany, so need to complete there house today.

Hope everyone has a happy Sunday. 

Bel. Xx

[Carolyn52]

Oh Bon
Best of luck with joining us as a cape crusader. .I'm sure you will be fine with it ..although it's a big dosage ..I've just stopped mine now for a week. .yippee no 7am pills and muffin ..so.lay on for me. Although I feel better on the pills.
💟💟💟💟💟

[bonariensis]

Hi all

Started cape today. Wasn't feeling well anyway. We shal see.

Bon xxx

[Carolyn52]

I have stopped any visitors with colds calling in to try to avoid a virus ....so many people with bugs at moment ...
I'm feeling a bit sicky so having plain food rather than anti sickness pills .....
BEL ..all those rescue animals must cost a fortune to feed and look after. ...but your heart is in the right place for care. It must be nice though to have them all.
Well one more load of peachy pills tonight and then a week off ..this month I had all 150gm pills not the 500 ones. .so many to take in one go!

[george]

Hi all and happy New Year.😊
I have been a little quiet lately for 2 reasons: I was feeling wiped out after catching this cold that has been going around which also meant that I had to have an extra week off Cape and i wanted a cancer 'holiday'. Back to normal now, well my normal- sore hands and feet and occasional dodgy tummy. Got reality check next week as back at hospital to receive 2 months of TM results. Yikes. They have been going up slowly but steadily since last May so expecting the worst. Onc said last scan in November showed stability, but that the cancer is active hence rise in TMs. Anyway, I had a nice Christmas and went away for a few days😊
Carolyn, I am no medical expert, but my understanding is that platelets help the blood to clot and neutrophils fight infections so are essential to our immune system which is why they have to be above 1.5 in my hospital. Mine did drop when I first started taking Cape and were always around the 1.5 mark; however, recently, they have started to rise. I have no idea why.
Have a good weekend all capers

George 🤗

[BJR324]

Hi Ramade and everyone else.

We have rescue animals too. We rescued 5 Alpacas, and 2 rather large pot bellied pigs, called Arthur and Bramble. We also have 15 rescued chickens! Alongside these rescued animals we have 15 runner ducks, 3 geese, and two goats called Pandora and Tiffany. We also have a small flock of 22 sheep. 2 rams called Barry and Kevin who we hand reared and now think they are dogs! 

Animals are therapeutic but hard work, my OH works very hard looking after them, as I’m all but useless now as I get worn out so quickly. I do partipate in the growing of the veg, as we’ve set up a reclining sun lounger in the poly tunnel so I can take a break any time in there.

The last few days have been a bit up and down, tummy not coping very well and I’ve had to resort to Imodium, hoping that next week my dose will be reduced and things will settle down a bit. I’ve also lost 10kg, so I’m sure this will mean my dose can be lowered.

Interestingly I get the runny nose side effect in the 2nd week of cape! Hoping that everyone is well and side effects in 2019 are more manageable.

Definitley feeling more positive today!

Bel xx

[LYNDYLOO]

Hi Carolyn/Lynne

When I was cape my neutrifils went down to 1.4. The hospital I attend like them to be 1.5. Think the neutrifils must white blood cells that ward off infection. I had the same problem when I was on FEC. I had to have an injection about 2 days after having FEC. I am not sure what low platelets means.

Hope that helps.

Linda

[Lynnq]

Hi Carolyn. I googled the question and apparantley platelets and neutrophils ‘are partners in bacterial destruction.’

So not exactly the same but they work together..

I get them from a mobile unit one cycle and then from the hospital the next cycle. I have Zometa infusion every six weeks which is at the hospital so they fit that in with my new cycle. They do blood pressure and weight when I am at the hospital, but not when I go the the unit.
I also feel worse on my week off - Nausea, diarrhoea and shaky. Also lower energy levels, still go for my walk around the village but hubby always comes with me now.
As you say things are building up, I don’t know how long before they give us an extra week off, I expect that also depends on SEs

Won’t complain though since I know that others have worse SEs

Xx

[Carolyn52]

Hiya Lynn
My platelettes ( are they the same as netrophills)
Were low last month and I only got the pills by having a lowered dose ! We are at the same stage with cape ..these things are building up. I stop pills tomortow for my week off so hoping this week they climb back up again. Feel horrible on week off though. ..
I get blood done Tuesday ready for Wednesday clinic. I always have to ask for blood pressure, heart test and weighting though. .they don't seem that fussed about these things.

[Lynnq]

Hi everyone.  Glad to hear Bel that your bloods were okay and that your TMs are better

I start my 6th cycle tomorrow,

had bloods done yesterday and then a phone call from the hospital this morning to say that my neutrophils were too low for me to be given my next cycle.

the hospital is about an hours drive away but we have a mobile chemo unit which comes to our local hospital and every other cycle they let me get my chemo from there

The options were to leave it for a week or to go to the district hospital where they would do another blood test to see if they had gone up...they told me that they were just marginally low...so I decided to go through and have the blood test.  It was a two hour round trip but they did the test straight away and the new results were through in about an hour.  Thankfully they had gone up to acceptable levels so they gave me my next lot.

They also told me that TMs had decreased again from 122 to 111 so pleased with that 

This is the second time this has happened with my neutrophils and I asked if there was anything I could do to make a difference but they said -‘No it  is just one of those things’

I have started taking multivitamins and vit c yesterday, and I am on Adcal already so hoping the extra vits will help 

hope you’re all back to ‘normal’ now after the Christmas break

Hugs to all

xx

[Carolyn52]

Oh what a lovely thing to do ..rescue animals. .they give so much love and appreciation back.
My son adopted a donkey for me this year. .she's out the donkey sanctuary at Sidmouth a few miles away. I hope to visit her soon. 🐆🐴🐮

[ramade]

Hi Bel, we have a smallholding aswell and we have rescue animals, i find them really therapeutic, i expect you do too.

al the best

Ramade

[BJR324]

Thank you for your lovely supportive replies. I had my bloods done yesterday and they were ok, my tumour markers were better than they had been, my liver function was slightly worse than before. 

Anyhow I feel a lot better, I’ve decided to go dairy free again as I wonder whether that’s making me feel so poorly. I started eating dairy after a 5 year break when I started cape because my calcium levels were so low and I can’t tolerate any calcium pills.

so today I’m hoping for a good day, no anti sickness and less morphine and I hope to be able to go for a walk around our small holding to chat with the animals! 

Again thanks for your support, I’m really appreciate it, particularly as I don’t know anyone else on the same treatment as me.

Have a good day everyone. 

Bel xx

[Carolyn52]

I take Vitamin c and d daily ..don't know if they are magic though! I stopped denosumab 7 months ago as my teeth and jaw were so sore. ..at Exeter they only recommend 3 years of it. I did 2.5 years so.nearly did my time.
I eat loads of dairy ..my old oncologist(the old school) said it was just as good as denosumab .
Yoghurt. Milk shakes and tinned rice pudding cheese.
That sort of stuff .
But I'm not a medical expert so don't quote me on this !!! I don't really like meat much
.odd piece of bacon is about it.

[Lynnq]

Hi everyone 

just wondering if if any of you take any supplements.  I try to take a teaspoon of Manuka Honey every day but often forget.

was wondering if vit C and a vitamin supplement would help in these dank dark days.  January is my least favourite month

xx

[Stillhere]

Hallo BRJ, I don't know whether this will help but I was on Cape for 2.5 years. I was on 1800 x 2 a day but my hospital is one of the top specialist ones in U.K. and they had a regime of 1 week on/ 1 off. This kept the side effects manageable but the treatment working. They have vast experience and said it made no difference to success rates.

I do think that some Oncs can be quite inflexible with their treatment regime as they feel safest following the guidelines. I'm sure it's worth a discussion though, it must be better that than having to give up on Cape?

[Lynnq]

Hello Bjr I am sorry that you are feeling so unwell I agree with Carolyn that the key is the doseage. I am on 2000 x 2 daily which my Onc tells me is a good amount for my height and weight but also leaves room for reducing it if the SEs become intolerable.
My SEs seem to occur at their worst at the start of my week off. Nausea, upset stomach and tiredness, also much more wobbly. The chemo nurse said that it is at that point when we have the most chemo in our system and that the week off lowers it ready to start again.
I would ask your Onc about reducing the dose.

Like you Carolyn I think that it is good that we post our SEs. I also feel wobbly and this is the only time that another person has mentioned it. Strange how comforting it is when we know that others have the same problems.......wouldn’t wish them on anyone though.
I am just about to start my  6th cycle on Friday, so far my SEs are tolerable and TMs are falling so here’s hoping

Thinking of you bjr and everyone else of course.

X

[Carolyn52]

I think it's good we are all posting our side-effect because I panic the symptoms are the cancer progressing and not the medication .
All the treatments have side effects. .looking back even letrozole did give some too over the 3 years I took it. Looking back the sleepless nights were worst ..gallons of coffee and bickys were my best friend then ! Now I have trouble staying awake ...
Anyway ladies the key is the dosage I think...once they get it right ..woo hoo we will be dancing on the tables next new year !! 🍷🍷

[Graceland Girl]

Hi BJR.....so sorry you are feeling so poorly. I was on 2150 x 2 a day for 4 cycles but felt so rotten..no energy, nauseous and spent most of my time moving from 1 chair to another and climbing stairs was like trying to climb a mountain. My Onc gave me an extra week off and reduced my tablets 20% to 1650 x 2 a day. I think this has helped so far, although this is only my 2nd cycle on the lesser dose. Still feel like my batteries have been removed and still get stomach ache and feel sickly after a meal...but nothing I can't cope with. One other side effect I have is getting very breathless.....oh and another, a continual runny nose .... that seems to upset my husband more than anything ! I think it worries him as I still try and do the cooking !   Anyway, I do hope your Onc can help you and fingers crossed you are feeling a bit better. All the best to you and everyone for 2019.

 Love GG xxxxx

[Carolyn52]

Hello bjr
I'm sorry u are feeling so unwell. ..I'm just finishing cycle 7 on Sunday and must say this one has been more hard to tolerate ..felt quite sicky at times and very wobbly too ...my hips and bones feel.like marshmallow with no strength in them at all ..in fact I'm having to use my stick just to walk a few steps to kitchen from my armchair.
I hope its a temporary blimp for you but talk to oncologist. .my dosage is down to 1300 x 2 a day now ..it's quality of life on this pill ...if possible.
As my platelettes were low ..I have large blood marks on my arms ...not sore or itchy but no one seems to be bothered about them.
I must say I felt really well for the first 6 cycles. .this one is a real bummer and I hope it settles !

[BJR324]

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]

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]

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]

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]

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]

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]

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]

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]

  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]

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]

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]

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]

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]

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]

Hi still here

Great news long may it continue.

Linda

[Stillhere]

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]

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]

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]

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]

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]

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

Ramade x

[Carolyn52]

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]

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]

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]

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]

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]

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