Community Champion
Posts: 8,325
Registered: ‎26-10-2015

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

Hello Sarah

I'm not on cape but do dip into this thread to keep up to date with things. At the moment I'm on exmestance and everolimus ( my devil pills) but if after my next scan they are not working. .cape or vineoribine will be my next line of treatment.

I'm sorry you are struggling. ..all new treatment does cause problems but a lot of the ladies here do get a good quality of life once they settle down with the right dosage ..that seems to be the key to it.

Sending hugs and hope u feel better as time moves on ...

Xxxxx
Member
Posts: 12
Registered: ‎14-04-2018

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

HI

I have just finsihed my first cycle of Capecitabine. I have never felt so awful. I think I had all the side effects listed but the worst was the nausea and exptream tiredness. It was all I could do to go from bed to sofa. Now having had a few days off I am starting to get energy but I can't walk due to the massive fluid blisters.

 

My consultant has reduced the does by 20% but I am not confident that this will make enought difference. 

 

Has anyone experienced similar.

 

Thanks

Sarah

JMP
Member
Posts: 21
Registered: ‎09-10-2014

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

Hi Mulligans I’m completing cycle 6 of Capecitabine now been on it since early Feb 18.
My feet are pink underneath and have a burning sensation. My hands are dry all the time. I have found Cetraben moisturising cream on prescription good.
The Udderly Smooth Cream with 10% urea is not on prescription I believe (?) ( made in USA).
It absorbs very well on my feet. Main SE for me are extreme tiredness and insomnia.
Also have dry eyes and nose, and heartburn. I have prescription meds to deal with all these.
Judith xxx
Member
Posts: 44
Registered: ‎01-05-2012

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

To the new people. I had a horrendous cycle 2 after breezing through no.1. My hands burnt and started to peel. My feet lost layers of skin. I ended up having to cut the peeling skin off with a medical scissors my nurse had given me. Dose was reduced on cycle 3. Feet and hands much better. Peeling has stopped too. Keep moisturizing your hsnds and feet. I must try the udderly cream!

Got scan results from 3 cycles of cape. Good news. It has cleared a lot of the multiple tumours in my liver. Bones stable too. Onc very happy. We continue on with cape. I didn't have a as good a result on abraxane but i suppose it depends what treatment works best. Im hoping this good luck continues on. Hoping to book a little sun holiday now the first scan is over!
JMP
Member
Posts: 21
Registered: ‎09-10-2014

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

Hi Tatyana,
Thank you for your reply. I don’t wake up in the early hours, the issue is getting to sleep initially. As my brain won’t switch off!
I’m 61yrs and thinking about retirement on medical grounds now. I used to work in London and had a 3 hrs daily commute on public transport. For that read a crap service with Southern Rail.
I’ve always had loads of energy until chemo. which is what I find so frustrating.
I did an 11 miles walk last Oct and now get out of breath going to the shops.
I don’t take afternoon naps as get up pretty late morning at present.
Though I’m trying to organise some activities per week so I have some kind of focus, other than day time TV with the cat on the sofa.
I make myself go out for a walk each day. Joined a keep fit group local authority yesterday evening to try to reduce BMI.
I also visit the local Macmillan Horizon Centre which offers support such as counselling ( invaluable) and complementary therapies.

Judith xx
Member
Posts: 763
Registered: ‎30-05-2017

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

Hi jmp,
Oh I do feel for you with the insomnia. It's so tough when you are so tired yet can't get enough sleep. Do you find you wake up in the wee small hours and then can't get back to sleep for all the stuff buzzing around in your brain?
I find meditation tapes sometimes help, otherwise I give up and read my book, and I often have an afternoon nap, I'm lucky in that I'm not working now and can doze when I like!
JMP
Member
Posts: 21
Registered: ‎09-10-2014

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

Hi All,
I was given a sample of Udderly Smooth cream with 10% urea by the Chemo Nurse at Chemo Dept. It absorbs well. I’m getting towards end of cycle 6 of Cape. Main SE are chemo fatigue and insomnia:-/
Member
Posts: 21
Registered: ‎10-10-2016

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

Hi pate1,

I have lung mets diagnosed Autumn 2016. At that time I had a really persistent cough - couldn't get through a sentence without coughing! My initial treatment was Letrozole and, after a few weeks, as the tumours shrank, the cough resolved. It has never returned.

Best wishes,

Maggie

Member
Posts: 763
Registered: ‎30-05-2017

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

Teresa, I had the sore hands thing very badly with docetaxel, but only slightly on cape. I swear by the cow cream too!
Member
Posts: 328
Registered: ‎28-01-2016

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

Hi Pate

Welcome to the Cape thread. Sorry, can't help with your lung mets question as I have liver mets.Perhaps one of the other ladies might know more. Good luck with the treatment; it is one of the more manageable ones.
Have a good week

George 🤗
Member
Posts: 328
Registered: ‎28-01-2016

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

Hi Teresa, funny you should mention Udderley. Amazon van larrived today with a tub for me so will let you know how I get on. I have been using Flexitol, and have used Udderley in the past, so we will see. Feet are bright red. Hope, now you are on one chemo, your feet and hands will improve.
Have a good week

George 🤗
Member
Posts: 137
Registered: ‎16-05-2014

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

Hi George

My hands get red raw already and then split and flake. Hosptial gave me some cream which helps with the itching. They said udder cream (yep what milking cows have applied to their udders lol) can work too apparently. My feet just blister easily and the skin tears. That's on top of sore and blackened nails but I think that's the other chemo drug I am having. Chemo just likes to give doesn't it? 😉

I checked what dosage of Cape I am on amd it's 1800 x 2
Member
Posts: 14
Registered: ‎14-03-2017

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

Hi

I've just started on Cape a couple of days ago....interested to know if anyone had a bad cough due to mets in their lungs and if so did the Cape help. (My onc thinks that my lungs are being irritated by the mets there giving me a horrible cough. Have been prescribed liquid morphine which helps).

 

Keeping evrything crossed that the Cape works!

Member
Posts: 328
Registered: ‎28-01-2016

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

Hi Teresa

Just wanted to echo what others have said really. Cape is a very manageable drug which has enabled me to get on with life, just back from a lovely mini break in Madrid. 😊Through choice, I don't work but suspect it would be okay to do so depending on the nature of your work and the dose you are on. I struggled with the higher dose, but have been much better on 1,500 x 2. I am now on cycle 13 and have to admit hands and feet are becoming sore; however, I soldier on as we all do. Hopefully, you have a good employer who will make some allowances.
Mulligans, know how stressful waiting for results can be but, at the risk of sounding like Pollyanna, scans bring good news too. I find the waiting room part the worst, just sitting watching every time the onc's door opens and, as you said, it never gets any easier.
Hope you are all enjoying the lovely sunshine. 😎

George 🤗
Member
Posts: 137
Registered: ‎16-05-2014

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

Hi Tatyana

I am currently on both but it's so good to know cape shld be a walk in the park compared to Docetaxel. Thank you x
Member
Posts: 763
Registered: ‎30-05-2017

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

Teresa, if you are currently on docetaxel, take it from me, there's absolutely no comparison between docetaxel and capecitabine! It will take a few weeks for the docetaxel side effects to wear off, but don't worry, once you've got that fiendish drug out of your system, cape will be a walk in the park! Not that there are any guarantees, but most people here seem to have tolerated it very well. I hope it works well for you!
Member
Posts: 137
Registered: ‎16-05-2014

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

Hi Paula and Tatyana

Your responses make me feel more confident if the Oncologist does just keep me on Cape and not the regime I am currently on that it will be more manageable. I hope so as by the time I finish cycle 6 I will have used up 3 mths sick on full pay. I have managed to work some days but not as many as i had hoped to. Just have to wait and see what the Onc says.

Thanks again

T
Member
Posts: 763
Registered: ‎30-05-2017

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

Hi Teresa, sorry to hear about your recurrence, it's tough. I found capecitabine very doable, I pretty much carried on as normal. It was hugely dehydrating, I was constantly thirsty and my skin needed gallons of moisturizer, and I did have some fatigue which tends to build up after a few months, but it was manageable. If you do suffer from fatigue, the best advice I was given was, don't keep going till you're exhausted, but take a break before you need it. Even a 10-minute rest can recharge the batteries. Good luck and stay in touch!
Member
Posts: 74
Registered: ‎28-06-2013

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

Hi Teresa

Sorry to hear your news about recurrence and secondaries. Wishing you all the best and sending hugs.

I took Cape for 20 months and and had a few SE in the beginning but after reducing dose to 1500mg twice a day i found it very doable. My main issues were constipation which was probably exacerbated by other meds and fatigue which may have been caused as much by the cancer as it was by the Cape.

I actually gave up work but I probably could have carried on as my employer was very good about time off for hospital appts and flex working when the fatigue was bad. In the end though I was lucky enough to be able to afford to stop and that was the right decision for me.

Good luck, let us know how you get on.

Paula

 

Member
Posts: 137
Registered: ‎16-05-2014

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

Hi all

I have just come across this thread about Capecitabine .

In Dec 17/ Jan 18 I was diagnosed with a local recurrance in my reconstruction (this is the 2nd recurrence) and secondary tumours else where. I am just about to start my 6th cycle of chemo which consists of Docetaxel followed by 14 days of Capecitabine. From what my oncologist has hinted at he may leave me on the tablets and I was wondering if anyone can tell me what the side effects are like when just taking this drug? Especially with regards to managing work. I know everyone reacts differently.

Thanks in advance for any support given

Teresa