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Xeloda / Capecitabine - Your Top Tips, please?

Member

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

Thanks for the reply Nicky .

Hope your doing ok.

All the best to you
Liz x
Community Champion

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

Hi Liz
Sorry to hear taxol hasn't helped you but I hope you do get good results from Cape. I must admit I didn't get great results from Docetaxel (Taxotere) whereas before that I had always responded well to any chemo I had including FEC in 2008 and Cape from Feb 2013 to Aug 2014. Cape worked well for me for nearly 18 months even though I should have also been on Herceptin at this point as my receptor status had changed. It kept my bone mets stable and shrunk my liver mets until a tiny new met showed up on a CT scan which is why I then changed to a new chemo regime which included Herceptin.
Hope your markers start coming down soon - and your stress levels.
Take care
Nicky x
Member

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

Hi ladies,

Just back from consultant and I have had no luck with taxol so she is changing me to this drug.

Feeling pretty stressed at the mo as my makers are really high!!!! Anxious about starting a new drug too.

Love yo all

Liz xx
Member

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

Hello there desi2

just saw your  thread on vomiting after taking Cap. i was on it for a short while (3 cycles) didin't work for me BUT I was also vomiting and the Onc said to dissolve the cap in warm  water - check with your doctor but i am sure that is what you can do if yo keep on throwing up 

Member

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

Thank you Sheila and Helen for your good wishes. I'm very cross that Cap has stopped working for you, Helen, but I'm hoping that Erubilin (sp?) Will do it for you. Sorry to hear that you will probably lose your hair, though. Still, if it works, that can be put up with (hard, I know).

Hope the rest of the Cap gang is doing ok, with few and mild se's. Barton.x
Member

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

Wow,barton,that's fantastic news. Long may cap work.
Huge hugs,Helen xxxxxxxx
Member

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

Hi Desi, hope the nausea has settled down and you are feeling much better.

Barton that is great news about your scan. I was also under the impression that you could stay on cap for as long as it worked for you. Some people have been on it for years. Hope that is the case for you.

 

Love Sheila. Xx

Member

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

Thanks stresshead. I wish you good luck with your scan - such a shame you will have all that stress near your birthday and silver wedding anniversary! How long do you have to wait for your results?

As regards your 10th cycle being your last - I was under the impression that I could stay on it as long as necessary (and as long as it works for me), but the chemo nurse asked me if this was my last cycle. When I said no, he asked if I was having 12 cycles then. So now I don't know what is happening! I have been given an appointment at the chemo dept for the 10th cycle, and an Onc appointment for the 11th (apparently I don't need to see the Onc for my next lot of pills). I will have to try to remember to ask at next Onc meeting in 6 weeks.

All best wishes to you. Hugs. Barton.x
Member

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

Barton, so pleased to hear your news. I've just finished 10 cycles of cape...as much as my onc says i can have..and am waiting for my scan appointment which s due in the samewek as my birthday and silvwer wedding aniversary!! alrerady have results appointment. Dreading it but hoping for a result like yours. x

Member

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

Hello Cap gang! Home from hospital after collecting next lot of tablets (Cycle 9), and was given results of CT scan from last week. Everything is stable, even after the 8 week break I had - I am SO relieved! The lower dose is working re se's (so far, anyway). Hope everyone is doing well, with few se's. Hope the sickness has subsided, Desi. Hugs, Barton.x

Member

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

I don't feel sick after taking Cape but do when I wake up in the morning as I have a lot of mucus on my lungs. By the time I take the Cape (rapidly on my way out to work) I'm not nauseous.
An alternative to Vaseline is Waitrose Baby Bottom Butter (the jar not the tube) which is made of olive oil, vanilla and camomile. Smells nice and does a similar job sealing in the foot/hand cream.
Member

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

Tracy ask for both types of anti sickness as apparently you can use both together. The cyclizine acts on the brain to stop you feeling sick and the met...(sp) empty your stomach fast.
But please get something as I know feeling sick all the time is not nice. By dinner time I have to force food down so I could take pills 😝. It's like the vicar of Dibbly and the christmas sprouts at my dinner time.
Take care and don't suffer . Also get Vaseline in for feet /hands Put on top of cream or by its self as great and cheap. My hands look like I'm 90 all wrinkled and finger tips dint! But I've not had splits in them.( im still taking my cap as no one said stop,even though it's not working!! It is my second week so onc will probably tell me to stop on Thursday lol if he remembers,shame I couldn't leave him at Fawlty towers. But saying that the nurses on onc ward are lovely,not like Fawlty towers )
Huge hugs,Helen ex cap gang lady 😔 xxxxxxx
Member

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

I have felt sick quite often, even in my week off but I take metocloprimide at the same time as every Cap dose. These have worked really well for me but there is a raft of anti-sickness pills available so give a few a try. It's so miserable feeling sick, hoping you feel better soon xx
Member

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

Tracy I answered your question on bone mets xxx
Member

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

Thank you both will try taking with food this evening rather than after xx
Member

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

Hello, Desi - I haven't had nausea/vomiting with Cap luckily, but I  know some people do.  It's miserable being sick, isn't it?  So best to be avoided if possible.  I can only echo Belinda and suggest you try eating a little more before taking the pills.  Also, perhaps try them half way through eating and hopefully the food will "coat" the pills!  Sympathy and hugs, Barton.x.

Member

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

Perhaps the biscuits were not quite enough Desi. I understand the tablets work with food so although you don't need a big breakfast perhaps more than you had this morning. Hope this evening's tablets are trouble free. X
This info is from the Macmillan site,
You take capecitabine tablets twice a day. Swallow them whole with a glass of water within half an hour after a meal. Capecitabine works best if it's broken down in the stomach with food. Take them in the morning after breakfast and then after your evening meal. The doses should be spaced 10–12 hours apart.
Member

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

Just had a few rich tea biscuits as I've been feeling very sick anyway and yes it was 12hrs I hope it doesn't happen again I feel so weak and wobbly. If it does continue I guess il be taken off it 😟
Member

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

Hi Desi, I never vomited whilst on the tablets. Are you taking them with food? Just a weetabix is enough, don't need a substantial breakfast. And leaving ten to twelve hours between doses? Hopefully this was a one off.
Take care. X
Member

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

Morning ladies I've been sick this morning about 30min after my pills, the booklet I have says contact chemo unit if you vomit more than once in 24hours anyone have this problem? X
Member

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

Does anyone take Spatone or another iron supplement? I am currently on 4g of Capecitabine per day (i.e. 4 x 500mg tablets morning and night for 14 days out of 21) and have trouble maintaining a decent haemoglobin level. I've had 3 transfusions since October and low Hb levels mean I can't concentrate as well as I should at work and I can find myself getting rather tired and hills and steps seem more tiring than they should!
So, would an iron supplement help? Are there any contra-indications?
Member

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

Thanks, Stillhere, yes, I have noticed my urine smells horrid while on Cap. It went back to normal during the break I had, though, thank goodness! It's the nasty smell of the 150mg tablets, though, that gets to me - yuck! I would have said it was the Cap itself if the 500mg tablets smelt the same, but they don't (not to me, anyway). Oh well, keep taking the tablets! Hugs, Barton.x

Member

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

Can't say I've noticed, I just unpack them all at once (2x150 and 3x500) and swig them down with a metocloprimide which does taste foul and a squash drink. It does give urine a horrid smell though, sorry to be basic!!
Member

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

Can I ask the Cap gang - those who are taking both sizes of pills (500mg and 150mg)?  Do you notice a horrid smell/taste to the small ones?  I have a hard job making myself take those out of the little plastic capsule, let alone actually to take the pill!  The 500mg ones don't seem to have any smell or taste to them though (which is good!). Hugs, Barton.x

Member

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

Hello, Desi - that sounds much more like it!  At least you have had a nice gentle start!  Lets hope it continues to be gentle on you.  Hugs, Barton.x

Member

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

Well feeling very silly his morning but having checked with my oh he said the nurse def said one of these twice a day sheer coincidence that it was the smaller dose box of of pills she had opened. So from this morning I'm now on 1650x2
Hope everyone's having as nice weekend as poss xx
Member

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

Omg just looked at pills and I've only been taking one of the pills! There's another box of 500mg of which I should be taking 3!! So that's 1650mg twice a day Thanks ladies best start correct dose in the morning xx
Member

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

Barton I've just double checked the dosage on my Cape and its definately 150mg I thought it sounded a lot less than others! I wonder if it's wrong! Think I will have to ring BCN on Monday and check. X
Member

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

Oh Stresshead, so sorry to hear about your toe! Nasty! I hope the antibiotics sort it quickly for you! I also hope the pain sorts itself out soon too. Hugs. Barton.x

Member

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

Just an addition to the convo about pain with cape. I am on 4300 per day and do have back pain, stomach pain and general all-over aches. I always get woried that the pain is due to spread and meds not working but perhaps not. Wish no one had pain but it is reassuring to know i'm not the only one. x

Member

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

Barton, just an update on the nail situation...ended up back at hospital yesterday as my big toe had got worse..infected and inflamed. Now on penicillin.oh the joys!!
Highlighted
Member

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

Hello Helen, I'm keeping everything crossed that Cap is still working for you and that this is just a glitch (sorry it's such an awfully painful glitch, though!). As everyone else has said, please don't suffer in silence - could your OH be forceful on your behalf? Gentle hugs, Barton.x

Member

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

Hello Desi, do you mean you are on 1500mg twice daily (150mg would be a miniscule dose)? I'm currently on 1800mg twice daily on my 8th cycle. I did 4000mg per day (total) for the first 7 cycles, but breathlessness was getting unbearable. After an 8 week rest period, I returned to Cap 2 wks ago, and so far the lower dose is causing no problems (se's first time round were slow to build up though - they didn't appear immediately). Please keep in mind that your Onc should listen to you and if you experience problems they can adjust your dose. Hope this helps. Hugs, Barton.x

Member

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

Tracy I'm on 4600 a day,which is quite high.
I do think it's causing all my problems. It did work really well,I'm praying it's held it stable and ct shows this,but with TMs going up and pain I'm very worried it's on the move. Then if it is stable and progresses next scan I've missed the eribulin CDF boat.
Hugs,Helen xxxxx
Member

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

Hi Desi, it's calculated on your weight, most doses seem to be somewhere between 1500-2000.
Hope it works well for you and Tinks and anyone about to start the tablets. I was a Capecitabeenie from 2008 right through to 2012.
X
Member

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

There was some talk about dosage a while back just wondering what general is? I've been put on 150 x2 xx
Member

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

Hello cap gang,
Tink,my pains got much worse on cap or denusumab (sp?) but it's a SE of both according to cancer research UK! So I'm not sure which is the culprit .
Hope you are all doing okay, huge hugs,Helen xxxxxx
Member

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

Thank you for the replies ladies - pain not so bad today, just very sleepy.  Hope it continues to improve and was just a blip.

 

Tink x

Member

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

Oh dear Tink I was only wondering today how you were getting on, I start Cape tmo. Hope it eases soon xx
Member

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

Hello Tink, sorry, no back pain here either. Could it be the stomach cramps that I believe are a possible se being referred to your back somehow? Also, could it be kidney pain? By that I mean are you drinking enough as Cap is very dehydrating? Hope it soon settles down for you. Don't let it slide though - it would be best to get it checked. Hugs, Barton.x
Member

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

hi Tink

i have just finished my 6th cycle of cap, have had terrible stomach cramps since the 3rd cycle, inot in my back though. i take a buscopan for the cramps which really helps,just another horrible side effect as well as bad hands and feet,headaches,fatigue ect!

angelina

Member

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

Hello Ladies,

 

I hope everyone is as well as they can be.

 

I just need a bit of advice.  I have had one cyle of cape and everything was fine until the night before my onc appointment.  I was woken up by severe stomach, lower and upper back pain.  I didn't take any painkillers as I wasn't sure what was causing it.  After being checked over by pharmacist (onc appointment was with pharmacist) and having an ECG at appointment they said it was all okay.

 

Ever since (5 days and have started second cyle of cape)  I have had constant very bad lower back and stomach pain.  The only way to get any relief has been to take codeine (prescribed when I was on IV chemo) 4 times a day, but it makes me feel ill.  Is this usual on cape or should I ring BCN for advice?  I wasn't given any painkillers at my appointment and I think they felt it was just a one off.

 

Tink x

 

 

Member

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

Hello Stresshead, thanks for the information. Sorry to hear about your toes - that sounds sore! I know several people on this thread have had the manky toenail problem, but so far I have managed to avoid that. My fingernails, however, are gradually looking worse and worse as the previous cycles of Cap work their way up. I'm hoping I don't lose them as I can't bear stuff to do with nails (I managed to keep them all when on IV chemo in 2011, but I did get some nasty horizontal ridges on them). My right index fingernail is particularly strange - it's curling up at the edges and is on it's way to being boat-shaped! I have to keep that one really short. I hope you get a good length of time from the Cap. As you say, if it keeps you alive, it's all worth it! Hugs. Barton.x

Member

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

hi Barton, just started my 10th and final |(according to my onc) cycle of cape..nails are now disgusting. toe nails are black and my finger nails have gone thick and all broken away: oe has gone 'bad'. they have broken very low down and are quite sore. Stil, rather have that and be ok. xx

Member

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

Hi all hope we are all doing okay.
Helen hope you are ok you haven't posted for a couple of days xxx
Well had alovely afternoon tea yesterday with the some of the lovely Welsh ladies look forward to the next meet.
Hope everyone has agood weekend I,m off shopping today to pick up a few things ready for when my son comes home on Thursday so excited can't come quick enough.
Take care all
Kaye xxx
Member

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

Bev really enjoyed and so lovely to meet you all,lol forward to next time xx
Member

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

Joined kaye today for afternoon tea at a beautiful hotel overlooking the bay. Was lovely to meet up with all the ladies again and meet you kaye. Cant wait till next time! Xxx
Member

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

Hello Cap gang! Hope everyone is doing OK? Sorry Cap stopped working for you, Jo, but glad you haven't had any nasty se's on it. Long may it work for you! I have a couple of questions for the Cap gang, if I may? Firstly, since my 8 week break from Cap, my finger nails have been very fine and bendy - paper thin, and they are partly coming away from the nail bed at the top of my nails. I have to keep cutting them right back as it hurts when they bend back! Now I know it will probably be from the Cap, as my nails won't have grown out fully during the 8 week break (and I am hoping that the Cap break will eventually work it's way through and I'll have stronger nails again, at least for a little while), but I was wondering if anyone else has had similar trouble? And now, after typing that, CHEMO BRAIN has struck and I can't remember what my second question was going to be!!! I'll get back to you again later, if I may? Love and hugsvto all, Barton.x

Member

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

hi all 

 

Although  i am no longer part of the cape gang Smiley Sad as it has stopped working! I am now part of the taxol gang! Had first one on wednesday and feel fine after it. Had the cold cap though! WOW its sooo cold its unbelievable! I thought my head was going to explode! after about 15 minutes I think my head was just frozen and i didnt feel anything after that! you have to have it on for 2 1/2 hrs!! when we took it off i had ice on my hair! lets hope it works! good luck to anyone having scans or results. Hope everyone is well.

hugs jo x

Member

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

Morning ladies lovely day here just very cold ,hope we,re all doing ok.Well finally given my 7th lot of Cape as bloods were fine and they finally gave me antibiotics to try and shift this cold and sore throat which I've had for weeks.
Helen hope your pain is better and that you mentioned it to the hospital.xx
Hope everyone else is as well as can be .
I'm going out for afternoon tea with afew ladies from the chat girls group on FB,it will be lovely to meet some of them.
Take care all
Kaye xxx