Member
Posts: 526
Registered: ‎15-04-2017

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

Good morning fellow Capers.

I’ve just read on the cancer research site that whether you have a full or empty stomach can affect how much cape gets into your bloodstream.

I had one slice of toast this morning. Is that enough?
I really struggle to eat a big meal at breakfast.
I’m wondering how much is enough. 🤔
Member
Posts: 526
Registered: ‎15-04-2017

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

That’s great news lynn.
I don’t get TMs. Never been offered. I might ask at my next appointment.
I’m looking forward to starting cape tomorrow. 🤞
I’ve told myself it can’t be any worse than FEC-T.
Just want to get going with it now. X
Community Champion
Posts: 8,325
Registered: ‎26-10-2015

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

Oh Lynn. .what good news to hear. .cape seems to be wonderful for a lot of ladies .I shall be going clinic Wednesday to get my next load too ..having blood pressure and heart checked this time and of course bloods etc.
I did a lot of Xmas shopping in our big matalan yesterday so need to do some wrapping up now.
Member
Posts: 609
Registered: ‎10-10-2012

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

[ Edited ]

Hi everyone...so good to see such a busy thread.

went to pick up my next cycle of tablets yesterday....which is my fourth.  I am very pleased to say that my TMs have gone down again by nearly half,,this is the second reduction in six weeks.  The nurse was nearly as pleased as I was.

 

hope everyone else has such good results and that you are as well as you can be

 

xxx

 

 

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

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

It's good to get this thread busy again as cape is a very popular treatment and we are all cape crusaders fighting this disease.
Well tonight is my last pills for a week. .won't miss the pill taking but will hate the withdrawal from them ..they must come out the system quickly once we stop. ..
Well enjoy your weekend ladies and the peachy pills
Member
Posts: 526
Registered: ‎15-04-2017

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

Thanks for replying George.
I start cape tomorrow. I’m trying to be optimistic it’s going to work for me.
I like your kitchen plaque. Wise words.
Good luck tackling the crowds. I hate them too.
X
Member
Posts: 328
Registered: ‎28-01-2016

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

Hi all

Good to see the thread is so active as it did go quiet for a short time. The theme seems to be to live our lives and make plans which is a good one. I plan from scan to scan and every 3-6 months I create a photo book of all the good times which I can look at when I am feeling down, makes me realise that I am living with cancer. Don't want to come over all 'Pollyanna' as, like most people with this diagnosis, I do have bad days; however, I also have a plaque in my kitchen which reads: 'the brave do not live forever, the cautious do not live at all' which helps to keep me motivated. I love little sayings like that.
Feel the fear, in answer to your question, Cape was very effective in tackling my liver mets. Over the course of almost two and a half years, I have had 5 liver mets. All, apart from a dot, have disappeared so Cape did work for me, thankfully. As I keep saying, I don't know how much longer I will have on this treatment, but I intend to plan some 'feel good' activiites before the next scan in February. I hope your treatment goes well.

Have a good weekend all with minimum side effects. I am off to brave the High Street in Chester, not sure how long I will last as hate crowds.

George 🤗
Member
Posts: 6
Registered: ‎18-10-2018

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

Hi Everyone, had my review today and the Onc sent me for a chest xray as I am so breathless all the time. Fortunately he said the xray was unremarkable but is giving me an extra week off to see if I feel better during the coming week and also I requested extra "time off" as I'm going  to an "Elvis" show in Coventry on Sat night at Grosvenor Casino. I think when go next Friday for my review and next prescription the Onc will reduce my dosage and then maybe I'll feel a bit better and have a bit more energy.

Thanks to all of you who responded to my previous posts...its a real booster to hear from you and hearing all your positive attitudes. When I was first diagnosed I wouldn't plan for anything thinking its not worth it as I probably won't be here. But now I have changed my mindset as I hear of so many long term survivors. In my area we meet every month, organised and held at the Hospital and lots of the girls there had their diagnosis years ago and are still going strong !

Hope you all have a good weekend, 

Love Carolyn xxx

 

Member
Posts: 526
Registered: ‎15-04-2017

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

Has anyone had any luck knocking liver mets back with this? I’ve just been prescribed today after letrozole, zoladex and palbociclib failed.
Liver nets have spread extensively. Hoeing this works.
Member
Posts: 2
Registered: ‎13-01-2016

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

Hi I hope you dont mind me joining your thread to find out more about Capecitabine.  I have just been diagnosed with Secondary BC after 9 years and several local recurrences.  Due to start Capecitabine in two weeks so finding the advice very useful. 

Member
Posts: 15
Registered: ‎17-07-2016

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

Hi everyone,

Well I have just completed my first cycle and have to say that on the week off I felt wonderful and was pleased that some of the minor SE Ihad ie feeling wobbly and ligt headed disapperared as I had convinced myself that the cancer had spread.

 

It is amazing how over active the brain becomes in the middle of the night as I lay awake !!

 

The onc is sending me for a bone scan just see if there is any other activity so fingers crossed that comes back clear.

 

I am now trying to get to the point where i feel able to make plans in the future and I spoke with the onc about travel. He dismissed some of my ideas such as a cruise due t high risk of infection but yet said that a trip to South Africa to visit family may be an option. He has advised waiting to see how effective this treatent is but i so hope that I am able to make this trip. 

 

I'm hoping that as  i start my second round that my energy levels don't dip and have some nice activities planned.. I'm heading over to Harrogate today and very much looking forward to it..

 

I think it was Lynne that mentioed a possible meet up in Yorkshire for coffee and if this were to go ahead I would love to meet some of you ladies.

 

Take care everyone

Sarah

 

Member
Posts: 609
Registered: ‎10-10-2012

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

[ Edited ]

Hi again everyone. Just finishing my third week off and off to pick up my fourth packet of pills tomorrow. This week has been as bad as when I am taking the pills but compared to many my SEs have not been too bad. Hope that doesn’t mean the cape isn’t working - tho I have read that SEs don’t affect results. Hoping to get a TM reading tomorrow which will give me further reassurance- they’re have been on the downward trend so far.

Graceland Girl hope that you’re feeling better and that they reduce your dosage which in turn reduces your se’s

and George so pleased that you are remaining stable after 15 months makes us all very hopeful. I agree about planning as well, I have always been a planner - it is our Golden Wedding on Boxing Day and we are planning a party in March.... when life isn’t so busy and the weather is better...can’t expect people to travel at such a busy time of the year. I have sent out ‘save the day’ invites. The pub we want to have for the party gets booked up very quickly so daren’t leave it too long.

Best wishes Carolyn and and Happy girl.

Just wondering where everyone lives I am in Yorkshire.... close enough to anyone for a coffee somewhere???

Hugs to all

C

Member
Posts: 328
Registered: ‎28-01-2016

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

Thanks for your good wishes, Carolyn and Happygirl. Cape has been good to me so far so I can't really complain about SEs, just deal with them. This is my new 'normal' so got to get on with it. Also, it means i can plan the next 3 months of my life until the next scan. I think this is what non cancer patients don't always get. I can't plan my summer holidays now as I don't know where I will be with my treatment so always have to wait until nearer the time.
Sorry, Carolyn, can't help with your week off. I bought myself an orange squeezer and have a glass of fresh orange juice every day with my breakfast, only a little thing but it keeps me happy. Also, I look forward to enjoying a glass of wine or two during my week off, not advocating this for everyone but it works for me- the simple pleasures. Speaking of which, just enjoying a bacon roll and cup of coffee in a lovely cafe in Birmigham.
Have a good weekend all

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

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

George I'm so pleased for you as you lead such active lifestyle with the peachy pills.
I wandered whether on the week off the pills. .I should take vitamin c or something to keep my energy going
Obviously I won't take anything heavy with the cocktail of pills I use .any ideas ladies?
We are having a new lady join us ..come on Bon ..say hello xxxd
Member
Posts: 11
Registered: ‎09-07-2017

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

Well done big hugs
Member
Posts: 328
Registered: ‎28-01-2016

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

Hi all

I agree with all the earlier comments. SEs are often at their worst during the week off which is a pain. I had bout of big D on Friday and sore hands/ feet on Saturday. However, after 2 Loperamide and a dioralyte I felt much better. Got to keep soldiering on, especially if peachy pills are working.
I had scan results yesterday which showed everything is stable, no progression. Phew, what a relief as I had convinced myself that after 15 months Cape my 'luck would have run out. TMs have risen slightly, but only by 4 points over 7 weeks so not too bad. Onc continuing with treatment and has agreed to give me an extra week off during the Christmas break ( whoop, whoop).
Hope SEs are easing for you all.
Have a good week

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

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

I finish my 2 week cycle again Sunday and yes hate that week too ...think it would do us good to rest the peachy pills but it doesn't. .takes a few days back on them to feel better. Think I feel the best on days 8, to 14.
But if they do what they say on the tin. .we must have faith in them and hope they are killing the blighters that have invaded our bodies. .
Member
Posts: 11
Registered: ‎09-07-2017

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

Hello Graceland Girl,

You are not alone with these SE's, I have just finished my 2nd cycle and my breaks seem much the same as yours without the breathlessness. I do take an antisickness pill in the morning even when on a break because it helps with the nausea,  so it might be worth a try. 

Pleased to hear the Doc will review your dose it seems to help some cope better with SE's from what I've read of other Cape ladies on here, so fingers crossed things improve for you soon.

I feel the hardest thing is to continue treatment knowing it makes you ill. But we have to focus on the possible improvements and that's what helps us keep going.

Hugs and keep going

Happygirl

Member
Posts: 6
Registered: ‎18-10-2018

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

Hello All,

 

I'm  on my week off from cap after completing my 3rd cycle ( 2150 x 2 a day ) I definately feel worse when on the break, which I thought would be the time to feel better. I am so tired, breathless get stomach ache together with the big D don't  want to eat and consequently cannot stand drinking all I should on an empty stomach as it makes me feel sick. I went to the Hospital today for my blood test and went to the Emergency Assesment Room where they put me on a drip for 2 hours. The Dr I saw took lots if notes and he said my Onc might reconsider my dosage when I have my review on Friday.

 

In the meantime hope all who read this are feeling well and I look forward to hearing if any other ladies have the same SEs. By the way...do we have any men in this thread as I understand men also can be affected by breast cancer.

Love Carolyn xx

Member
Posts: 609
Registered: ‎10-10-2012

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

Hi again everyone, hope you’re all as you can be.  It’s cold, wet and miserable here today in Yorkshire.

 

like you Carolyn I feel the cold more on Cape, I was on Letrozole for almost five years  - didn’t have hot flushes but never felt really cold.  

 

Hope that the liver biopsy goes well for you Bel. and that you can start your cape and start to feel better.

 

This is my week off on my third cycle - Finished Friday and had a bit of the big D for a couple of days, also really tired and a bit shaky but today I feel much better.  Will be collecting my fourth cycle on Friday after my bloods on Thursday, so fingers crossed for good results.  Had low neutrophils after my first lot but when I asked the nurse if there was any supplements or diet changes which would help she said that there wasn’t. - just one of those things.

 

all the info about doseage are very interesting.. thanks for that everyone 

 

lovey phone call from my son today who says not to Christmas shop for food, him and his partner will shop and arrive on Christmas Eve and he will cook on Christmas Day- so I will just get a few extra treats in.

 

Xx