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Xeloda / Capecitabine - Your Top Tips, please?

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

Hello Cape ladies it seems I will be joining you on this drug after some rads to skull and spine. Bit worried bout Helen haven't seen her post on here or bone mets. Anyone know how she is ? Xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Kaye. Thanks for that - had a small melt down at the GP's yesterday when I went to the practise nurse for a blood test re.peachy pills and Onc.visit on Thursday. I am having an allergi c reaction to the Fragmin (for the DVT a few weeks ago). It started with a small, red itchy patch around each injection site, but has progressed to me itching all over! Haven't been getting much sleep. Anyway, she was extremely kind and understanding and got me an appointment with the duty doc. She was also very kind and prescribed 2 different anti-histamines - 1 which makes you drowsy to take at night, and another to take in the mornings, and a tub of cream to rub in all over! It helped last night - I actually got a decent night's sleep. I do hope you are doing OK, and all other Cappers. Regards. Barton.x

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

Oh, Katherine, please don't feel as if you are whinging! You are going through an awful lot at the moment, and everyone knows you are really suffering! I'm sure it must be awful and everyone knows it can get on top of you sometimes. I can't help with advice, because I haven't been in your situation, but you did the right thing by ringing the chemo nurse. Did she get back to you? Cyber hugs, and best wishes, Barton.x

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

Oh katherine i really feel for you love. Ive been so rough too so know exactly how youre feeling. Ive been in bed now since sat nite.
Its hard to see the light at the other side when we're so low so im sure its natural to think the worst love.
Please keep going and keep strong for everyones sake. We're all rooting for you and hoping things will improve. Its a rotten stinking hell of a disease.
what did your chemo nurse say to do? Ride it out i expect. Thats about all we can do .
sending you a small tender hug and love. ((( ))) 💖
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Katherine2701

 

Maybe you could call our free helpline and talk through your concerns with one of the staff who are there to support you. The number is 0808 800 6000 and lines open 9-5 weekdays and 10-2 Saturday.

 

With best wishes

June, moderator

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

Oh Katherine, i know thees not a lot we can do to make you feel better and we all know where you're coming from....its the uncertainty thats the worst when you feel ok never mind when you feel so bad, Is there any way you can be put in touch with a psychologist or at least speak to someone from BCC or Macmillan? i see the former which helps but so far haven't contacted anyone else even tho i'm told i should. I know this isnt much help but just want to send hugs and love....sometimes the only way to go is a good cry. Hope you start to feel better soon. x

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

Hi Cape ladies, I am feeling really rotten. Not sure if it is to do with the chronic constipation that I have or the chest/urine infections. I feel completely depressed. Has anyone else had problems like this. I'm not getting better at all and am feeling really unwell. I've phoned my chemo unit to speak to a chemo nurse to check what to do. I don't know if I need more antibiotics or what. I feel like I'm always whinging on here but I feel so upset. I feel like I'm at the top of a slippery slope and that my health is just getting worse and worse day by day. I feel like I'm coming towards the end and it's breaking my heart. I'll be honest I was in a bad way in August but am feeling so low now. I don't know what to do.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Elily (waves leathery hand)

So glad you've had encouraging results on Cape recently.  Just wanted to thank you for mentioning your blood transfusion.  I'll be getting 2 bags of blood on Saturday, after onc visit yesterday.  I had asked BCN for earlier blood results - I was a bit shocked that my Hgb had dropped from more than 12 in 2012, to 8.3 yesterday.  Onc said it should help the chemo to work more effectively as well as improving tiredness, swollen feet etc.

 

Odd taste in mouth, I just ignore it but my food preferences have changed a bit.  Gone completely off coffee these days.

 

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

Hi all Cap gang hope were all doing ok this morning.
Katherine thanks for the good wishes for my scan but it won't be till after Xmas after my sixth cycle ,hope you're feeling a bit better .
Hilsy I haven't had blurry eyes but my eyes are dry and abit sore sometimes Onc said it is due to Cap and told me to put drops in .
Helen where are you?hope you're feeling ok you haven't signed in for roll call xx
Elily sorry you've had to join us again but you'll find lots of support on here xx
Barton hope you're doing ok xx
Good luck to all the Cap gang who are having treatments ,scans,results this week.
Just going out to do a bit more Xmas shopping with my sister and niece and a spot of lunch .
Take care all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi katherine how are you feeling today? Hope things are picking up. Hugs. I have a question for anyone who can help. I'm on Cape and lapatanib daily (no chemo break but lower dose). My eyes are on a constant watery blur and I don't know if it's caused by dry eye so the eye over compensates that way or over expressing tears so im using eye drops in case they not producing tears and helps but doesn't help blurring of course and my eyesight is just constantly blurry. Any other experiences or advice? Thanks and really hope you're all ok x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi
Nicky, I have indeed gone onto a strong antibiotic which might be making me feel sick as well as the chronic constipation. I've spent two days in bed now which seems ridiculous but I feel too ill to get up. I hope you and all the Cappers are continuing to feel well. Just got to beat this infection and get my digestion on the right route and hopefully I'll be feeling good too! Thanks particularly to Nicky, Helen and Bevlar and Kaye. You've all been a tower of strength. Kaye, not sure when your scan is but I am excited for you and the results. I am sure they will be good. Goodnight Cappers off to sleep now...
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi, I posted here a few months ago when first on Cape, but thought I'd reintroduce myself. I was off Cape for 3 months over the summer when I had a holiday in Italy and some dental work, but Tamoxifen didn't cut it for me and I was rather anaemic (4 bags of Hb has sorted that out). So pleased to be back on Cape and feeling pretty well especially after a very positive scan result.
I'd love recommendations on how to deal with nasty taste in mouth as I don't think that eating loads of sweets is the healthy answer!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Katherine, I hope you start feeling better soon, assuming you are on antibiotics to help? Take it easy if you can and rest up whilst your body gets over these things.
Nicky x

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

Katherine so sorry you're not feeling well hope you feel better soon.
Hope the rest of the Cap gang are feeling ok today,I think yesterday tired me out so much that I didn't wake till 10 this morning,that's the best nights sleep I've had for months xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Katherine - so sorry to hear you are having such a hard time - it all sounds very nasty and painful!  I do hope you feel better soon.  Hoping everone else is ok!  Barton.x

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

Im so fed up! Grrrr. Predictive text!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I've got a chest and urinary tract infection, I'm chronically constipated and generally feeling really unwell. Mso fed up!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton and all other ladies it is quiet on here today hope we,re all doing ok.late posting had a busy day been out for lunch then abit more Xmas shopping,went to visit my great nieces who always make me smile,then spent some time on FaceTime with my sister and nieces in Canada ,tired now so off to bed hopefully have agood nights sleep after my busy day.
Take care all
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Cappers. Everyone is very quiet today - I'm hoping that means everyone is doing ok at the moment re.side effects, etc.? Wishing everyone good luck. Barton.x

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

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

Hi pam,great holiday and thank you xxx glad H and F have healed and not sore. Yes,it's back to reality 😞 grrrr good luck with your appointment on Tuesday xxxxx hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Have posted on other threads re my holiday, experiences on cap etc....just wanted to say  really pleased to hear your good news Helen......you have been such an inspiration through really difficult times....enjoy the good news.......and good luck to everyone else awaiting results, suffering S/es etc.........my hands have healed after 2 additional weeks off capecitabine and feet not sore.....back to reality on tues! (onc appt)_xx

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

Hi cap gang,thank you xxx
Barton I hate predictive text. It's on my phone too and some texts are sooo odd. Xxxx
My manly toes AKA as manky toes are still soooo sore.
Katherine,I've no advice to give apart from cap can give you both!! It's very fickle .and cap can give you urinary and chest infections according to my GP.

On another note boots sells bamboo socks £6:99 for three pairs !! They are only in shades of grey ( not the book lol) and shades of beige ( that's the sequel to book when hubby starts snoring lol) and black long socks. Lovely and soft.
Well anti sickness are making my eyes very heavy so hopefully I'll get a couple of hours sleep.
Huge hugs,cap and manky toe gang,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Forgot, Kaye, thanks for good wishes re.scan results.
Barton.x

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

Helen, I'm so so pleased for you! Great new. Keeping my fingers crossed for your scan.

Going of at a bit of a tangent, I wondered if anyone had ever had raised AST levels? Mine have apparently gone up along with my infection markers. I did of course have a week off last week because I felt so ill. My GP said he felt it was a viral infection. I think it is a urinary infection but am not sure what's what at the mo
TBH. I've been really constipated however and they feel it may be linked to that? Im not sure what is going on to be honest. Anyone else had this experience?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Kaye, so glad you had a good time!

I'm not sure Helen wants "manly" toes! That made me laugh! Is that a predictive text issue? I hate predictive text.

Stillhere, thanks for that info - I expect you can guess that I'm hoping that the longer I'm on Cap, the fewer se's I have. I'm on the 2 wks on, 1 wk off regime, so might not work that way for me. I live in hope! Best wishes to all Cappers. Barton.x

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

Wow Stillhere thats amazing...over a year on cape. It worked for me for just 3 months! Hoping the iv docetaxel will do it for me...had my first one today.
Love and hugz to all the other ladies here xxx 💖💖
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Stillhere that's excellent that you have been on Cape that long and it continues to work for you,hope I gat the same success from it.
Barton had a lovely lunch and shopping trip,good luck with your scan results .
Helen hope your manly toes get better soon,I haven't had the sore hands and feet this time just feel more tired.
Hope all other Cape ladies are doing ok.
Love
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hallo Barton, yes I did get much worse SEs when I first started on the 2 week on, 1 week off regime. Marsden Oncs say they get as good results with 1week on, 1 off but with fewer SEs so I have been on that since October 2013 ish. I was talking about this with the Professor of the unit on Tuesday (he just happened to be doing my appointment) so I'm happy with their guidance obviously!! This might not be appropriate for everyone though, I have more of a regional spread but still inoperable and incurable.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Kaye, hope you had a successful Xmas shopping trip and enjoyed yourself with your neice, and lunch. Best wishes. Barton.x

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

Stillhere, wow! Since August 2013! Did you start off with se's and then got used to them, or did you never have any? You are lucky! I have to say that it's the breathlessness and tiredness and weakness in my legs after I've walked only a short distance that upset me the most. Hope all the se's stay away! Good luck and best wishes. Barton.x

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

Helen that's wonderful news! Also glad you got the devil pills! Sorry about the toes though! I had a CT scan today (after 6th cycle - in rest week now), but have to wait for the results until I see Onc.next Thursday. That's the nerve-wracking bit, as we all know. Cyber hugs, Barton.x

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

Thank you Kaye xxxxx
Omg! Still here ,that's great you've been on cap since august 13 wow! I hope I'm on it that long. Glad your SE haven't got any worse too.
Huge hugs,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Haven't been on for a while but just wanted to say congrats to Helen on her good news re: TMs!! You sound such a lovely lady always cheering us on, I'm so pleased for you!
I feel a bit guilty reading everyone's SEs because I seem to get so few. I do take metocloprimide with the peachy pills as I was so sick with IV chemo, anyone else tried this? My feet are ok, mangy toenails of course but Vaseline was a great tip. I do get tired but a catnap sorts this out. I've been on Cape since August 2013 so I guess SEs don't get worse but I've been lucky all along-if anyone can be lucky xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Cap gang hope we,re all doing ok just been for a decade scan to check my osteoporosis .
Helen that's excellent news with your TM bet you are so pleased and it's good that you got your next lot of peachy pills.Well just off out now with my niece for lunch and abit more Xmas shopping.
Take care all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,cap and manky toe gang. I got peachy devil pills and plucked up courage to ask about TMs they are 155!!!! They were nearly 800 at end of august before I started cap. Still no date for CT scan but I'm hoping with all my heart that I've got a treatment that has finally worked after 18 months of failure.
Nurse said cap does cause manky toes and GPs always say oh it's an in growing toe nail don't worry . And to watch for infections in toes.
Just wanted to share my news as I feel sooooo happy now.
Massive hugs,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Katherine 2701,
I was on Cape for 10 cycles and then my status changed so treatment changed !!! But I also suffered with bad stomach cramps when on Cape, these can be exacerbated by the anti sickness tablets that you are given, Domperidone for one !!!! Keep taking the buscopan as that will help, don't take Immodium if you are already suffering with constipation as that will constipate you even more and may be the cause of the cramps !!! Also if you are on ondansteron one side effect is constipation !!! Hope this helps !!!!
Julie x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all, I do hope you are all doing well. I've still got these chronic stomach pains, even when I take a sip of water. I've tried buscopan for the last day or two with no noticeable improvement. I suspect now it is a SE rather than a bug as I first suspected. I don't have diarrhoea, if anything I am constipated. Is there anything that anyone has taken that helps with thee stomach cramps? I am tempted to try Imodium to take the pains way but worried that will bung me up more if you know what I mean! Anyone know of any other wonder cures?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning ladies hope we, re all doing ok today.Well don't feel quite so tired today so maybe I'll go out for a couple of hours to try and finish my Xmas shopping.Good luck to all who have scan results this week and hope everyone treatment is going ok.
Take care all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,jo,yes you do get bruises while on cap. It's the drop in platelets.
God,I can't believe how many people have manky toes. I think that should be top SE!!
Huge hugs,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning everyone!
Hoping everyone is coping with the various side effects that have been mentioned!
Else. - sorry you have to be here but welcome!

Just a quick question. Does anyone get odd bruises appearing while on cap? At first I thought I must have been banging into things but the amount of bruises I have I definitely would have remembered even with chemo brain. They are in on my legs and arms.
Still got b@@!!y sore toes! Or manky toes as helen says!
Sending love to anyone getting scans or results today!
Jo c
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Kaye,glad you had a pj day.hope you have more energy soon xxxxxx
Barton,thanks,xxxx
Hugs cap gang xxxx Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Kaye, very glad to hear that! Yes, the tiredness really gets you, doesn't it? Glad you had a pj day and hope you are more rested now! Good luck to all Cappers. Barton.x

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

Hi all late posting today this fourth cycle is making me really tired so been having a PJ day.
Helen hope your bloods improve for Friday so they can give you your peachy pills,hope your sister is doing ok I remember having the cold cap it is hard to do but I persevered and kept my hair but don't think I would do it again it also means your at hospital longer.
Barton my feet and hands are not so bad on this cycle but they reduced my dose so that could be why,
Hope everyone else is ok and good luck to Tracey on your MRI scan.
Take care all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Else and welcome to the BCC forums

In addition to the support and shared experiences you have found here, our helpliners are on hand with practical and emotional support so please feel free to call. Lines are open 9-5 during the week and 10-2 on Saturdays on 0808 800 6000

Here's a link to further support ideas and information in the BCC secondary breast cancer pages which I hope you will find helpful:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

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

Hi Else, welcome to the club, sorry you've had to join. I think I've had every SE under the sun! My feet and hands have been sore but I wear the gloves and socks over Vaseline and although I've had the suspected ingrowing toenail it came to nothing and my feet haven't been unbearable to walk on so not a big SE for me so far this one. My taste in food has completely changed. I can't stand anything sweet at all. I'm very funny about meat and find a staple of my diet now is veg soup homemade which I love! I also went off tea and coffee but I am able to drink the odd cup now and again. My worst SEs have been chronic stomach cramps and nausea. I haven't had diarrhoea. I just feel like I have and the stomach cramps have been overbearing. I'm trying buscopan now to see if that helps.p with that SE. Apart from that the only other SE I can think of now is the tiredness. I'm in bed by 8:00pm every evening and regularly nap during the day. I'm can't think of anything else now (you'll be glad to hear!). I hope that is helpful to you but the ladies on here are fantastic and will no doubt be a lot of use to you as they have for me. Kath
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Else, sorry you have had to join us, but you are always welcome and everyone is very supportive. My experience of Cap has been that every cycle seems to have different side effects. Not everyone gets them, of course, and I hope you will be one of the lucky ones.  I have had a range of se's - at mostly different times, luckily, but some have co-incided. I have had a red itchy rash on the second cycle, headaches on one of them, burning coals & broken glass on feet when walking, some cracking of skin on fingers (but haven't suffered nearly as badly as poor Kaye has - hope you are doing better now, Kaye!), very unpredictable bowels (in the form of occasional diarrhea, and, of course, awful fatigue! Some days I can hardly get upstairs, and went to bed at 5.30pm one particularly bad day (usually around 8.30pm since starting Cap.). Please be aware of the fatigue - it can be amazing! I have also had taste changes (nowhere near as bad as IV chemo, though) - I can very rarely drink coffee now as it tastes really horrible most of the time (and I love coffee normally) and chocolate tastes very strange (another huge disappointment!). Always remember though, the week off is a Godsend! On tablet again, so am afraid I can't start a new paragraph here. Katherine, I do hope your stomach is feeling better. I haven't had that particular se, thank goodness. Anyawy, Else, I hope we have all helped with our little tips for coping, and best wishes. Barton.x

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

Hi Thank you all so very much for your support and sharing your experiences with capecitabine. As you say everyone seem to be different and I can see I have been lucly so far. The feet and toe problem sounds pretty awful so I hope that passes me by. A bit of nausea I can deal with.

How strange about the taste, although in my case I am sure it does me good to cut out the sweeter things from my diet, but not to be able to eat vegetables, that would be a real problem.

I will keep looking on the forum and see how everyone is doing.

Else

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

Hi Else, sorry you've had to join us ..your story sounds familiar. I was diagnosed with skin mets 3 years after my original diagnosis. I was told for 5 months it was a sebaceous cyst and did not have any treatment for 6 months. I was then put on dotaxetol (IV chemo) and cape. I am just about to have my 6th cycle and have been told i can then have 4 more cycles of cape. Difficult to know which chemo is causing whicg SE....

i have had nausea but no actual sickness, probably due to being given aprepatin(?) straight away after suffering horrendouis sickness when i was on FEC chemo. My taste has also gone haywire...really difficult to explain what its like to those who have never had it..if anything i have developed a sweet tooth. At times find it difficult to eat in order to take cape tablets. Was warned about the hands and feet problem and although i didnt suffer at first i started to moisturise and wear cotton socks etc from the beginning. Only when i got to 4th cycle did i have any problems. One lady has described it a a combination of hot coals and broken glass on your feet...very apt. Also find finger tips numb but painful.another sensation hard to describe. I have trouble with buttons, packaging and even pressing keyboards and card machines in shops (usually end up using a pen to do it). I've also had stomach gripes and a bit of diahorrea. Overwhelming problem for me has been fatigue and absolutely no energy but not sure how much  of this is due to the disease itself. Reading these posts i know there are ladies suffering more than me so everyone is different . In the end we all seem to cope because we know we have to. Everyone on here is so supportive, especially during the difficult times we all have..i'm sure you'll find te same. x

 

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

Good morning cap,manky toe gang,hope we are all okay.
Else,welcome to the cap gang. Sorry you are joining us but you are very welcome. My SE is nausea. And now a manky infected toe,oh you just love the peachy devil pills lol.
Each cycle can be different ,some people get all the SE others none.
My taste in food as changed . I'm a vegetarian and now have to force veg down as can't stand it !!!! And I've now got a terrible sweet tooth,which I never had before.
I had double whammy diagnosis like you primary and bone mets last year. Was put on hormones but failed as cancer changed to triple negative. Cap is my first chemo as I now have bone progression and lung and liver mets. This disease just keeps on giving,it's so generous lol.
Katherine,how are you feeling ? Hope this extra week off is helping you get your strength back.
Good luck cap gang. I've got another appointment on Friday to see if bloods okay and pick up devils ,hopefully. Still feel rubbish but hopefully by Friday I'll be great.
Huge hugs,Helen xxxxxxxx