Xeloda / Capecitabine - Your Top Tips, please?

[Carolyn52]

Hiya happygirl
I must confess I'm on cycle 5 ...and Im sleeping and eating for England too but I'm feeling chIrpy and happy on it which waa better than 5 months on the devil pills. .exmestance and everolimus. .
I'm only on small dose so maybe a reduction. .I'm. On 1600 x 2 a day. ..

[happyygirl]

Hi Nicky

Thanks for posting your advice about Cape It has helped me realise my own situation better. I am in my second cycle after other treatments for mets progressions and feel bloody awful almost non functioning in fact. I had decided to ask about a dose reduction on my next visit to the oncologist as I am not coping well with SE's spending 20 hours a day in bed totally exhausted when dosed and 12 hours plus varying sofa time shared with more mattress time  when on the days off. So I now feel more confident in asking for a dose reduction. thanks for giving me confidence to move forward.

hugs

happy girl

[george]

Hi all

Just been catching up with recent posts. Don't want to repeat all the good advice, just wanted to say that the SEs do get easier. I was very tired when I first started Cape, but I am generally okay now. It is all about finding the dose that is right for you. Onc increased my dose slightly in response to me eating too much chocolate and putting on weight!
Regarding TMs, I don't think there is a 'normal'. My onc goes on trends so if they are constantly rising, he will send me for a scan. It is easy to become obsessed about TM results and, in many ways, I wish my hospital didn't use them; however, mine are super reliable whereas for other people they are very unreliable so always best to go on scan results. Speaking of which, I get my results a week on Tuesday. The reason why I have lots of nice treats planned for myself before then. My week off starts tomorrow so I will be able to enjoy a few glasses of wine too😊
Carolyn, I agree with you about Udderly; it is expensive, especially when ordered from Amazon. I am getting used to having lizard like feet. Thick socks, insoles, Sketchers and lots of moisturising do help.

Have a good week all 🤗

[Carolyn52]

I think the secret of cape is the dosage really ..as I was 9stone ish I got a small amount 1500 x 2 a day which is probably why I'm feeling OK with it. If you get the larger dose..bit more side-effect. I also have 2mg steroids daily and a heart pills so quite a cocktail to tolerate. ...
But hang in there with it ..it's good regime if it's working for you ...

[nicky08]

Hi Sarah

Yes, when a treatment fails to work for a long time it does rock our confidence.  I hope Cape works well for you and it is a completely different treatment to the hormones you have had before.

I can't answer you question about tumour markers as I don't get them done however I know its more about the trend for you, not necessarily what number is normal.  Obviously very low numbers will show less activity but they are not reliable for everyone so it will depend on what the trend is if you get yours done.

As to adjusting to Cape I was on it some 4-5 years ago and it took me a couple of cycles, and a dose reduction, to cope with it. Initially I was on a 100% dose but quickly went down to 80% which was then effective for the 18 months ot so I was on it.  I really struggled to begin with but after a couple of cycles I felt my body had adjusted to the daily doses and didnt feel quite so tired and generally got on doing the things I wanted to do.  I did get the Big D occasionally on my weeks off and that seems to be quite common.  I also had a few splits on my finger tips and a few cracks on my feet (even though I moisturised all the time) but these did clear up especially if I had an extra week off which happened on a few cycles.  If you suffer badly with side effects do speak to your oncologist, there is usually room to change the dose so you get the right balance between effectiveness and quality of life - which is what they are aiming for.

Nicky x

[Carolyn52]

Hello ladies
Welcome
Sarah sorry to hear that pablicobic(ibrance) didn't work for you. Lots of us would have liked a shot at it but its so limited in UK still. .but I'm happy on cape atown moment. .so hope it keeps doing some magic for us all. Hormones are easy to tolerate compared to the big guns stuff ..I did nearly 3 years on letrozole before it gave up.on me !
The tiredness on cape issomething you just can't fight ..sometimes I'm sat in my chair and bang. Doing a grumpy old man's nap! Something I never did before ...
But sleep is good ..the body knows when it's ready

[Graceland Girl]

Hello Sarah Senior... hope you are feeling a bit better now. I'm on my 3rd cycle of cap and for me its the feeling of a complete lack of energy thats the worst side effect.. Apart from having intravenous chemotherapy I have been on letrozole and exestamene which didn't work, then tamoxifen for a few months which then stopped working..hence we are now trying cap. As for the tumour markers, I can't actually remember what number they gave me. I think it was around 400 which was a big leap from the previous number. They haven't taken the TM in recent blood tests...the Onc omitted to request them, but they requested them on my latest blood test, and should get the up to date info at my next review in a couple of weeks.

All the best..Carolyn 

[Sarah.senior5683]

Hello to all the ladies on here, I of course didn't know Barton but send my condolenses as it is always sad to hear when someone has lost their struggle.

I am now joining this thread as having been on letrozole and pabociclib for only two months it appears that it wasnt working for me sadly so fingers crossed that the cap is more effective.

I am only starting my second week and feel out of sorts so hoping that my body adjusts to it.

I see that a number of you mention tumour markers and just wondered that for those of you whose are going up what level is normal and how much do they tend to go up.

I guess that I am struggling at the moment as all I can think of are the oncs comments in relation to timescales due to the fact that the first traetment didnt work. I am finding it hard at present as well as much as i have a very suportive network of friends both my daugters have gone away in the last couple of months one to go travelling and the other to go to uni and I know that my youngest is struggling with things.

Hopefully I can take some comfort and support from this forum and knowing that so many of you are doing well on the treatment.

xx

[Carolyn52]

Oh George. .you do so well on cape ..I'm hoping it's going to work a little bit of magic for me. I start the peachy pills again tomorrow. .feel better on them. The week off i feel tired and twitchy! Weird.
I've had no trouble with the trots or feet yet ..obviously will sometime. Not that impressed with udderly cream that was recommended though. ..find Johnsons baby lotion just as good at £1 a pop !

[george]

Hi Waffles

I echo your sentiments regarding Barton.
Do PM me if you get a chance as I have been thinking of you.

[george]

Hi Green Damsel and welcome. Although I am sure you would rather not be here, you will get lots of support and good advice from all the lovely ladies on this thread. This is my fifteenth month on Cape and, I have to say, it has been the 'easiest' chemo I have been on. SEs for me were the big D when I was on the full dose during my week off. Dose lowered now so, with the help of Loperamide, I am able to control dodgy tummy episodes. The other side effect, which I am suffering with at the moment, is sore feet and hands. I moisturize regularly and sleep in socks to try and help feet.
Regarding hair loss, I do not know anyone who has lost their hair on this chemo.
Do let us know if you have any more questions and good luck with your treatment.

George

[redridinghood]

So sad to hear about Barton.........fran. I never met her but of course read her posts on these forums. She was always so welcoming, helpful, and caring. She is safe now of course, but her wonderful sister will miss her down here. So hard to miss loved ones. But heart warming to read all the warm comments. She was loved and so appreciated. Fly high, Fran. 

mo

[Carolyn52]

I'm sure fran is looking down on us and grateful for all the lovely comments from ladies here ..her funeral is 21st November here in Exeter. ..will be a quiet one but I hope to go to show my respects to a lovely lady that was taken so young. (61 )
Rip fran xxxx

[Waffles]

Hi Carolyn,
So sad to hear about Fran. She was a lovely, kind and intelligent woman. My thoughts are with her family and friends. Waffles x

[nicky08]

Hi Carolyn

So sorry to hear about Barton/Fran, another lovely lady lost too soon. Do send my condolences to her family if you are in touch and sending hugs to you. Thank you for letting us all know. 

Nicky xx

[Carolyn52]

Hello everyone that has joined us on this thread. I just hope theseI little pills keep us all well for a long time. .I'm finding it a easy regime to master ..as far as hair loss is concerned I've not heard anyone loose their hair ..maybe a bit thinning but everyone else is different. I don't color mine these days and avoid hair straighteners too .
Back on peachy pills Sunday. .anyone else find the little ones a nuisance. .because of my dosage I have 2 biggy ones and 4 small ones twice a day!

[Carolyn52]

Hello George
Its nice to hear from you ....fran really enjoyed your pms and your holiday stories. ..it's good that you keep so well and energetic. ..
Keep popping the peachy pills ! ☺☺☺

[GreenDamsel]

Hello ladies,

hope me you don’t mind me joining in, especially having read the sad news about someone you obviously all cared for. 

I started cap today after EC and Pax chemo, surgery then rads.  Apparently the cap is because I’m triple negative and the chemo while it had shrunk the tumour significantly there were still live cells.  My onc wants me to to this for 6 months (8 cycles) if I can tolerate it.  I had minimal side effects with the other chemo but the daily dosage of this stuff and only a week off in between makes me wonder if I could be in for a rougher time.

Any advice on practical tips for being able to stay ‘normal’, I’ve only recently really felt like I was no longer a patient and this feels a bit daunting.  Also am I likely to loose my newly returned hair, the chemo nurses were a bit vague when I asked this and said ‘maybe, maybe not’ which wasn’t the most helpful answer. 

[george]

Hi Carolyn,

Thanks for letting us know about Barton. Such sad news. Fran sent me a number of private messages which were so supportive; she seemed a very kind, thoughtful and warm person. I think in one she mentioned how you had joined her to celebrate her birthday. Please pass on my condolences to her family.

George

[Anna_BCC]

Thank you Carolyn for letting us know about Barton.  Please pass on our condolences to Bartons family.

If any of you would like to talk to someone, our free Helpline is here to offer support. 0808 800 6000.

Best wishes
Anna
Digital Community Officer