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Xeloda / Capecitabine - Your Top Tips, please?

Community Champion

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

It's nice to have a bit of banter as we all have daily problems to deal with but I try to have something planned however small each day ..otherwise to be honest I could sleep all day
Today been to a 70th cream tea birthday party in a remote little tea room. ..all knitted tea cosys and bone china cups etc. Just nice for us oldies !
Grandchildren are such a gift to have around. .they do give a focus which keeps us fighting all this.
💜
Member

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

Hi George and Caroline,

Thanks for your kind comments and support it's nice on here because you all get it and it makes me feel less isolated.

Good to hear you all planning some fun in your lives ladies without that we would feel even more sad. I am hoping to be well enough to go to my grandaughters school concerts I just love those events. They are 3 1/2 and 5 years old, both attending school in the Welsh Medium so are bilingual and correct my poor Welsh. Boo Hoo!. Best of all they sing in both English and Welsh it is so lovely to hear the kids all singing away in the choirs.

In the meantime I hope you are all getting as much fun as you can.

Be well and keep smiling.

Hugs to all

Happygirl

Member

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

Carolyn, try not to be too disappointed regarding your dose reduction. The same thing happened to me when I started Cape; it really attacked my neuts so I had to have a dose reduction. Neuts have since recovered and I am back up to 1800x2 a day. This is also due also to the fact I have put on weight-too much chocolate.🙄My onc did say Cape either works or it doesn't and he has patients who are on low doses.
Happygirl, sorry to hear you have been unwell. Hope you are feeling better. You have such a positive attitude and it is good news your onc has lots of other meds to try. That is the thing with Sbc, it is all trial and error until we find a treatment that suits us. Let us know how you get on and enjoy your retail therapy😊
Hope all you lovely Cape ladies are doing well. I am off to the ballet this afternoon to see the Nutcracker

George 🤗
Community Champion

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

Hello happy girl
I'm sorry u are having trouble with cape ..I stopped denosumab 6 months ago after 3 years because it was really playing my teeth up ..but here in our area they only recommend 3 years of it anyway.
Hopefully there will be more treatments if cape isn't suitable ..I didn't do well on exmestance and everlimous but they might offer it to you and everyone is individual and copes differently.
Member

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

Hi ladies,

Just catching up on your posts as I have been cape-unwell-bed.  I'm sure you will be okay on a reduced dose Carolyn52.  My oncologist told me this week it was not dose dependant for good results so I hope you can remain on it for a' long spell' and get the benifits.

I went for my 3rd cycle on Monday but when my oncologist saw me she decided to suspended me for 2 weeks of cape and delay my Denusomab too.  I will be reviewed then and we will decide how I will move forward. Which is good because I have options and my onc has more stuff in her arsenal if cape is not for me. Yippee! 

On the positive side the drugs had already started to reduce the mets in only 2 cycles, so for you girls who are uncertain it works - it works great. So keep taking the peachy pills. 

My next plan is to join the Christmas Shopping with the others in this group as soon as I can, just in case the shops run out of goodies. 

Happy shopping to you all and by the way remember you need to treat yourselves too, I always feel better after Retail Therapy.

Hugs to all   

Happy Girl

 

 

Community Champion

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

Oh Lynn. .poor you having a cold ..I'm trying to avoid crowds and people hugging me ..just to be sure.
I was on 1600 x 2 but now on 1300 x2 a day. Hope it still works some sort of magic still.
Member

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

Hi Carolyn

 

sorry to hear that your bloods are low.  I do know of a lady whose doseage was lowered twice because of early problems when she started Cape.  She was fine for several months and then they raised her dose because she put on weight, so you could still have a long spell on the pills.  

Was your dosage lowered by much ?

 

I am full of cold at the moment....getting better though.....so taking the rest and spoiling myself a bit

 

xxx

 

Xx

Community Champion

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

Oh dearie me ...my bloods and platelettes were low today although I feel ok so I'm now having a reduction in dosage to 1300 x 2 a day.
Disappointed as I'm only on cycle 6 ...hoped for a long spell with the peachy pills ...
Member

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

Thanks for the advice. I’ll stick to my toast with coffee for breakfast and see how it goes.
🤞 x
Community Champion

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

Hello
Well after 5 cycles of cape ..got my first dose of the "trots" yesterday. .not a big problem. .just annoying having to stay near the loo ..and we only have one upstairs. .buy I do have commode downstairs for emergency but haven't used it yet. ....
Soooo only eating plain food today. .pot noodles and tin rice pudding! Had planned a roast at the local pub but maybe later in the week.
I always have a muffin with early chemo pills and a cuppa soup. .once I forgot to eat something with the peachy pills and I did get a burning tum all day.

Member

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

Hi all

Good news regarding your TMs, Lynne. I have mine done every 3 weeks, but only ask for results every 6 weeks as it was becoming too stressful. At least it means that every other appointment is a relatively relaxed one.
Enjoy your week off, Carolyn, if you can. I think SEs are worse during our week off due to build up of chemo but, hey, what do I know? I am looking forward to an extra week off at Christmas as hands are becoming quite sore.
Feel the fear, when I asked my onc about food amounts, he seemed to suggest that a small snack was fine. I just had a piece of thick toast with my tablets this morning. Best to check with your team though as different oncs say different things.

Managed to survive the crowds yesterday. One hour of shopping and I am totally bored 😂

Have a good week all

George 🤗
Member

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

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

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

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

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

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

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

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

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

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.