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Xeloda / Capecitabine - Your Top Tips, please?

bertie1
Member

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

Morning all Cap ladies had a lovely weekend in Tenby can't believe how nice this weather is for this time if year,another sunny day here in Wales.Hope you're all doing Ok on your Cap I'm on my second cycle and so far so good hope it continues like this fingers crossed.
take care all
Kaye xxx
bertie1
Member

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

Hi angelina sorry you've had to join us.I don,t have lung mets,I have mets in bones ,liver and chest and my primary was 15 years ago with a recurrence 3 years ago when I had axillary clearance followed by chemo ,radiotherapy and was on letrozole hormone therapy up until march this year when it was discovered in my chest nodes and from there to bones and liver.You will get lots of support from the ladies on here as I have found and am so grateful for this forum.I suggest every time you think of something to ask just write it down that way you won,t forget when you next see your onc.

Kaye xx
2catlady
Member

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

Hi,Angelina,so sorry about your diagnosis. I was diagnosed with primary and bone mets last June and have just been diagnosed with lung and liver mets last month.
We all understand what a scary time this is for you. I have no symptoms so far from lungs and didn't have a biopsy.
I'm on cap oral chemo which has been my first ever chemo as it was hormone treatment first.
Try to write all your questions down before you see your onc so you won't forget anything. Try to have someone with you who can ask if you get upset or can't ask. My hubby always asks the questions for me. Once you get your plan in place you will feel more in control. We are all here for you
Huge hugs,Helen xxxxxxxxxxx
Bevlaar
Member

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

Hi Angelina.., sorry you've had to join us but lots of ladies here going through the same to offer you support,. I had first primary in 2005 and another primary in 2009. Lung mets dx in may. I had very small amount of fluid at base of right lung few weeks ago but like you, not enough to drain.I've been on Capecetabine oral chemo since july and have 2 weeks on 1 week off....indefinitely i suppose. Its quite manageable.  I still work 2 days a week and try and carry on as much as possible with normal things. 

 

I have recently been suffering with breathlessness which is the only thing I find hard to cope with.  But I've been given very small dose of oramorph to take now when I need it for the breathlessness and that helps.

I have 2 mets in right lung and 2 lymph nodes...hilar and paratracheal.  Think they are more central. I've been told the chemo will work on all of these...and hopefulky shrink them.

I did have a lung biopsy in may after dx... done with bronchoscopy.  

Hope I've answered your questiins but feel free to ask at anytime. There is a thread on here as well calked "lung mets please join in" if you want to read all the posts on there,  Really helpful.

love and hugz....bev xxxx

ginette65
Member

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

HI bevlaar

i have just been diagnosed with lung mets.i get my treatment plan in 2 weeks as my oncologist is on holiday.am only 3 years since my primary.am so worried about what treatment ect. i have some fluid on my lung but not enough to drain.did you? did you have a lung biopsy? have so many questions!

angelina

Bevlaar
Member

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

Hi cw...i was dx with lung mets in may this year and started Cape on 1st July. I've been led to believe that i can stay on it indefinitely until i stop responding to it then they'll put me on something else.
Hope it works as well for you as it has for many other ladies here 😀
Love bev xxx
2catlady
Member

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

Hi,Cw,you can stay on cap for years as long as it's working for you. Some ladies are on it for year others months,nobody can tell how long it will work before C adapts to it.
I hope you get many,many years on cap. I think the record is 9 years by a lady on here .
Huge hugs,Helen xxxxxx
stresshead
Member

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

Hi Cap ladies..have previously used the 'skin mets' thread but think you may al be able to help me. Was eventually diagnosed with local recurrence skin mets in July after being told for 5 mths that it was sebaceous cysts. Have just had my third cycle of taxotere/capecitebine but am getting conflicting information. Was told by my breast surgeon that this was inoperable because of where it is (sternum area and around reconstructed breasts) and was therefore incurable but controllable. My oncologist said i would have 6 cycles of tax/cap then i could have anoter 4 cycles of cap. I then asked my breast surgeon what happened after that and she sort of hinted that th cap could carry on indefinitely. However when i asked the same qestion of my chemo nurse she was mystified...when i asked her what the next stage would be she said' nothing because the mets would be gone'?? when i told her that i had een told it was incurable but controllable she said it was imposible to stay on chemo meds indefinitely. I have read many threads on here where ladies have been on cap for years..who do i believe. Thanks

2catlady
Member

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

Oh,have a fab time,Kaye xxxx
Barton
Member

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

Sorry, Firefox is driving me nuts. It just crashed again. I think it was the latest update. Moneck, thanks for your reply. Good luck to all Cap.ladies starting their next cycle. Love, Barton.x

 

bertie1
Member

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

Morning all Cap ladies hope your all well today and Helen good luck with your second cycle ,I started my second lot yesterday and good so far.Hope you all have a good weekend ,I'm off to the caravan for the weekend ,making the most of it while the weather is still nice.

Love
Kaye xx
2catlady
Member

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

Bumping up for Ave xx lots of newbies to cap on here. And great tips and advice.

Hi,cap gang,glad everyone is doing okay. I'm off to pick up send cycle of the peachy pills today ready to start today. I've really enjoyed week off ,first time I've never had to take pills( I don't count calcium one as they are yummy,yes,I know I'm odd lol)
Huge hugs,Helen xxxxx
Moneck
Member

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

Hi Barton,

 

Last year before I got my treatment plan but knowing it would be chemo I phoned my GP's Surgery & enquired about flu jab. He rang me back & said to make an appt to see him & not the 'jab clinic', so I was personally done. With his usual humour - ready, sure, too late it's in!! 

 

You have reminded me to get it in order this year before I restart Cape, probably in October, I have had an extended break since mid April with tumour markers levelled off at 600 (were 1,800 last October). Had a great summer out & about seeing friends & knitting, hands & feet have recovered & energy level good.

 

Best wishes,

Moneck

 

bertie1
Member

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

Hi Bev glad the yucky symptoms have gone could well be chemo fatigue ,I remember when I had FEC I felt more tired as the time went on so maybe it's the same with Cape.Im on first day of second cycle and okay so far .
Love
Kaye xx
Bevlaar
Member

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

Hurray...no yukky symptoms tonight! Its 7.30 and I'm still up watching tv lol!
Spoke to my bcn today. She said she hadn't heard of my symptoms being side effect but could be chemo fatigue. Have to rest more. Its 4th cycle now so maybe its accumulating?
Good luck to everyone
Love and hugz. ...bev xxxxx
Barton
Member

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

Ahhhh! Firefox has just crashed for the 2nd time! Thanks everyone for your input re.the flu jab. According to Belinda's advice re.timing, I will probably have to make a separate appointment for the jab.

 

Best wishes

 

everyone, regarding side effects, etc.

 

Love, Barton.x

 

bertie1
Member

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

Hi Nicky thanks for bumping up the thread on travel insurance,not going away yet want to see how I,m doing on Cape first and if it manages to keep things stable then I would like to book a holiday after Xmas
Kaye xx
nicky08
Community Champion

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

Hi
I had my first ever flu jab last year as I was on Capecitabine and felt I should get added protection. My oncologist said it was OK to have it but I wasn't given any extra advice about when. I will be asking about it for this year as I'm now on the big guns of Taxotere and will definitely have a compromised immune system.
Nicky x
Ps Kaye, have added a bit about travel insurance on your other post. I'll find the recent thread about insurance as well and bump it up.

2catlady
Member

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

Oh,thanks Belinda,that does make sense . I'll see GP and get one booked when hubby has his xxxxx
belinda
Member

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

Some info I was given re flu jabs when I was on this chemo, I think I have this right, anyone please tell me if not, but it's best to have the jab very soon after finishing your cycle so it has a short time to hopefully take effect during the chemo break between cycles? So on Cap you have the week off plus a few days at the start of your next cycle while it's still a relatively a low dose. I'm on Arimidex again at the moment and have also been advised to get jab as usual.
bertie1
Member

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

Hi all you lovely Cap ladies hope everyone is feeling ok.I started my second cycle today fingers crossed it goes ok.Has anyone got any advise on travel insurance while you are on this chemo

Kaye xx
2catlady
Member

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

Hi,cap ladies,glad everyone is doing okay.
Good luck,Barton with CT xxx
Yes,I think we can have flu jabs as it's not a live virus that they use. I'd get it done,I'll ask my GP to put me on list when I see him next week.
Pick up my second lot of peachy pills tomorrow. Hope ing this cycle is okay too.
Huge hugs,Helen xxxx
bc-lass
Member

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

I asked my onc last week about flu jab. I had one last year when on chemo, I'm now on hormonals only. He said "yes, get it done, always get it done".
Barton
Member

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

Hello, dear Cap.ladies! Hope everyone is feeling OK today.  I have just started my third rest week, so hoping the diarrhoea doesn't get too bad! I have to say that I have found the third cycle a bit harder than the others. More tired, headaches, a rash on my right shin and the skin on the pad of my right thumb has split despite the hand cream!

 

I had a CT scan on Tuesday and will get the results of that next Thursday when I see the Onc.before getting the go-ahead for the 4th cycle - as long as the CT scan shows good things (reduction would be good!). The CT scan was a doddle, it's the waiting for the results that is so nerve wracking.

 

Bev, I do hope you are feeling better today. Kaye is right, there are a lot of colds about at the moment. 

 

I have had a letter from my doctors surgery today inviting me to go for a flu jab in October.  I usually have one every year, but should I this year? Does anyone know if I should or shouldn't? If I remember I will ask the Onc.next week.

 

Anyway, best wishes to everyone. Barton.x

 

 

bertie1
Member

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

Hi Bev sorry you're not feeling much better perhaps you're coming down with a cold or something like that,there seem to be a lot of colds around at the moment.If you don't feel any better tomorrow give your bcn a ring she will be able to advise you.I will keep you posted as to how I get on with my second cycle.

Take Care
Kaye xx
Bevlaar
Member

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

Had to come to bed at 7 again tonight...same symptoms. ..temperature, aching joints mainly wrists and legs, back and neck and just a feeling of weakness and feeling sleepy. Slept from 4.30pm till 6 after I got home from work and still tired.
Been 3 nights in a row now....does anyone else get these symptoms?
Love bev xxx
Bevlaar
Member

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

Hi kaye...yes thanks bit better today. Come into work but just very tired...need to go home now!
Good luck with your Cape this week. Let us know how you get on xxxx
bertie1
Member

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

H Bev and Helen hope you are feeling better today.Hi to all the other ladies on Cape as well hope you are all doing ok.Just come back from my onc appt and all bloods ok so ready to start my second cycle here goes.I also got a lot of answers from her today ,she says that the new disease in the liver could have changed status as the chest nodes that are involve some of them have responded to hormone treatment and some haven,t so she says that at the moment she is going to see how I respond to the cape and if she feels that things are not going in the right direction then she would probably do a biopsy on the new disease to see if the status had changed and then she would add in other treatment.Well just off out for a nice walk while I'm feeling ok.

Take care all you lovely ladies

Kaye xx

Bevlaar
Member

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

Hi ladies. ..won't make live chat tonight. ..had to come to bed again for the second night in a row. Not feeling too good. Does anyone else feel like this on Cape!?

Each new cycle during first few days I get flu like symptoms..aching neck and back and bit of a temp. But feel really weak and have to get to bed. Has anyone else experienced this?

Love bev xx
bertie1
Member

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

Hi Helen I enjoyed my little outing today.Hope you feel better tomorrow and good luck with your 2nd cycle of the peachy pills.I got busy day tomorrow as I am having the D injection as well.

Love Kaye xx
2catlady
Member

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

Hi,Kaye,yes,enjoy your last day off. I start second cycle on Friday. I'm feeling okay but did have the D yesterday and today! Very strange!
Good luck with your second lot of little peach pills.
Huge hugs,Helen xxx
bertie1
Member

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

Hi ladies hope you,re all good on this lovely sunny day.Im making the most of my last day on my week off Cape so off out for anice bit of lunch and anice walk around the lake with my sister and my great niece.Just hope my bloods are ok tomorrow so I can start taking the second cycle.

take care ladies

Kaye xx
2catlady
Member

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

Hi,Nicky and cap ladies, it's strange how a few have said they get diarrhoea on week off. I feel like "it's coming" but nothing. Omg! I hope it doesn't happen on plane after second cycle lol . Mind I may get loo to myself and a lot of angry stares !!! My silver plasters were Elastoplast .antibacterial with silver. I've just packed them along with Imodium !!! Apparently it stops the trots in an hour ( 9 1/2 hour flight!!!)
Huge hugs,Helen xxxx
nicky08
Community Champion

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

Hi Hilsy
I took Capecitabine for 18 months, finishing this August. It took me a couple of cycles to settle down and not feel any ill effects at all, by that I mean nausea. I did get diaroheae (sp?) a few times, like Bev on my week off but this only lasted a short time. I did have a dosage reduction of 80% quite early on and stuck with this dose until I came off it. The sore hands and feet weren't too bad but I occasionally got splits in my fingers that didn't heal quickly and also the skin on my heels was very dry and cracked. No amount of moisturising even with 25% urea cream, helped. I found faster healing plasters from wilko a good and cheap alternative to the silver ones, that I never managed to find! All in all very doable and do ask for a break of a week or so if the cracked hands and feet get to you, the extra weeks off it really help.
Nicky x
Ps Barton, my tablet is having a hissy fit day as well!

bertie1
Member

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

Hi I've just finished my first cycle of cap and I started to have side effects on the second week,a bit tired cos I wasn't sleeping too well and I had headaches more than usual not sure if that is caused by the cap or because I was tired.Also on day 13 my hands and feet were a bit red and a little bit tender even though I moisturised them constantly.As regards to taking with food I usually just have cereal in the morning and a banana to take with mine and I seem to be ok.Good luck with your first cycle I'm sure you'll be fine.
Regards Kaye xx
Barton
Member

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

Spoiler
 

 

Hello Hilsy,  regarding the amount of food to eat before taking the Cap.pills, my chemo nurse told me that it didn' t have to be much.  She suggested a banana or a yoghurt as being enough.  I actually hate bananas, so I have a few - 5 or 6 - small sesame and poppy seed biscuits that I get from Sainsburys. For occasional variety I have a packet (2) of the yoghurt covered GoAhead biscuits (they come in a box of 5 packs of 2 biscuits) and that is plenty.  Hope this helps.

 

Also

 

apart from some occasional bouts of diarrhoea in my first couple of cycles, I am noticing some other side effects whilst on my third cycle (just started 2nd week of third cycle) - I am now noticing a rash on my right shin, drier skin generally, and quite sore (but not splitting) heels.  My mouth feels odd sometimes, too, but not too bad.

 

Regards and best wishes to all Cap.ladies.  Barton.  ps. Sorry for strange paragraph break, but my tablet is having a hissy-fit.

 

 

 

 

 

2catlady
Member

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

Hi,I've just finished my first cycle and having first day off for week.i take mine as soon as I've finished breakfast and 10/12 hours later with my dinner at night. It needs to be with food as it's broken down and changed in the gut. (Something technical ??)I was very sickly first week but no other side effects as yet. I think it's a chemo that is accumulative so SEs will come later on. There are ladies on here who have been on if for months and years and tolerate it very well.
I make sure my feet and hands are really moisturised with udderly smooth ( quite OCD about it) I've got plasters with silver in as recommended by our lovely Belinda and Imodium just incase .
Huge hugs and welcome to the cap gang,Helen xxxxxxx
Bevlaar
Member

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

Hi hilsy....I'm just starting my 4th cycle. The only s/e's I've had is diarrhoea which usually happens on the week off strangely! Nothing else yet and that's since 1st July.
I would recommend taking after breakfast...I usually have cereal or toast. Then after my main meal in the evening. This is usually between 6 - 8pm.
I would say definitely have more than a banana.
Love and hugz....bev xxxx
Hilsy
Member

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

Hi all, hope you don't mind me joining. I started capecitebine today and have two questions...firstly you have to take with food...is a snack like a banana enough or does it have to be more substantial? Also how long did people start to notice side effects? Thanks lots x
funnyface
Community Champion

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

Lenora, There is more chemos for metastatic breast  cancer than you mentioned. I only ever did lupron injections to shut down my ovaries. This did not slow down my cancer. My oncologist then said no hormonal would work for me. He said that I wasn't that estrogen positive. I went for a 2nd opinion and that guy said hd felt that my oncologist went lightly with my first treatment and should have given me something to shut down my adrenal glands too. That any time I wanted a break frkm chemo to come see him that he thought they could work. I haven't gone because when I was thinking of going my chemo failed and my lung collapsed so I thought I needed to different chemo. I was just ready to maybe try it and tere is a new area of concern in my lung so need to scan end of Oct. to see what's going on. I was just reading that you need to result of 4/8 for hormonal to work. I'm going to be doing some major questioning at my next appointment !! I do think that the women who have been on hormonals have been on more than one. I think it is much like chemo,you just keep trying to see what works. Wishing the best to you and your mom. Funnyface

bertie1
Member

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

Hi Pam thanks for your tips I've taken my last day of my first cycle today and my feet are still a little sore but am able to walk on them.I will mention this to my onc next week and she what she says,in the meantime I will get some gel liners for my shoes.

Bertie xx
pam01
Member

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

Hi Bertie.......My tips for sore feet!!

stay off them as much as possible!...I find mine can be bad at any time of cycle if i am walking on them more than usual...eg walking in London last weekend

Try varying the shoes you wear...and all need to have gel/padded liners...each of my shoes rubs in a slightly different area so wearing different shoes helps a bit (Im not aware of the rubbing except when my feet are sore!)

I use MBT type shoes when the skin on the pads of my feet/heels are painful.....it takes the pressure off these areas and takes the weight through your midfoot which helps

I use flexitol at night and wear socks.

Ultimately you are very early on in your journey with cape...maybe your onc will think about reducing the dose..I didnt get symptoms until much later...and I try to have occassional breaks from treatment to let hands and feet recover.xx

bertie1
Member

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

Hi cat lady and all newbies on cap.Im on day 13 of my first cycle of cap and this has been the worst day I've had as my feet are a bit sore even though I've been moisturising them well hopefully they will be better on my week off any tips would be appreciated.Hugs to you all on this and hope everyone continues to do well xx
2catlady
Member

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

Hi,new cap ladies,how are you all doing? I'm 10 days into first cycle,sickness seams to have settled( touch wood) I'm moisturising hands and feet as if a gold medal is up for grabs. I have as slight tingle in feet and hands but nothing too much hopefully.
Our lovely Belinda told me to get plasters with silver in as they heal cracks quickly. I picked up a couple of packs from boots just in case and some Imodium . I've just ordered more udderly smooth from amazon too as pot is going down fast.
Huge hugs ladies,Helen xxxxxx
bertie1
Member

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

Hi Macie thanks for your reply it's good that you are doing so well on it,I don,t know how many cycles I will be having but they will scan me after the third cycle to see if it's working.I hope it works as well for me as it seems to have worked for a lot of people on here,and I don,t really want to do taxol which would be what they will do next and as after doing fec three years Iwas really poorly. Love Bertie x
Macie40
Member

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

Hi Bertie1
Yes I had quite a few bad headaches when I first started Cap but now on 7th cycle and glad to say no more headaches and apart from pleural effusion and being breathless Cap seems very doable after experiencing the effects of Paclitaxol. I hope you have good results on it and it is as kind to you as it is to me Love Macie x

bertie1
Member

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

Thanks 2catlady for your reply.Hi everyone I have just started my first cycle of capecitibine and am on day 12 and not too bad just not sleeping very well so I am tired and I have had a few headaches,has anyone else experienced this while on this chemo.Any tips would be appreciated.
nicky08
Community Champion

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

Hoping that it is helping you Katherine as I know what a difficult time you have been having recently.  Fingers crossed that Cape kicks butt x

pam01
Member

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

Fingers crossed its working well for you Katherine.xx

Katherine2701
Member

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

Hi Julie, thanks for your message. I am so pleased for you but also that gives all us ladies on Cap such hope. Long may it continue!

I have finished my first cycle of Cap. Still some pain and sickness but other than that not too many SEs so far. I wish all the ladies on here fantastic results and will keep people updated on mine. It is so great to feel you have the support of others on here. This really is my lifeline.