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Xeloda / Capecitabine - Your Top Tips, please?

2catlady
Member

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

Hi,Bertie,have a great time in your caravan. The winter is here now in NE ,sun had gone until next year now.xxxx

Barton ,lol,yes you and bev can swap legs
Xxxxx
Hugs to the cap gang,Helen xxxxx
bertie1
Member

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

Hello ladies hope you're all ok today.all your tips are great regarding the creams as my feet are abit red at the moment.Well just off down the caravan for the weekend have to make the most of it before the site closes for winter.Hope you all have a good weekend.

Love
Kaye xx
Barton
Member

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

Hello, ladies!

 

Thank you all for your congratulations re.my scan results.  I was so nervous beforehand, and had to wait an extra 2 hours after my appointment time (my Onc.is renowned for over-runs, but I try to be patient because he has to give bad news to people - I like that he spends the extra time), but was so relieved at the good news.  Long may it continue, and I wish everyone such good results.

 

Helen - I like your thinking - that bertie1 (sorry - or is it Bevlaar) and I make a good pair with matching rashes but on opposite legs.  Does that mean we can take turns having both good legs?

 

I'll be visiting £land at the weekend to look for a nice hand/.foot cream as per recommendations, and also Amazon and Ebay for the gel socks/cotton socks!  Luckily, I haven't suffered badly with sore hands and feet yet (just a crack in the pad of my right thumb, which has now healed (also thanks to Savlon! - I don't work for them, honest!)).

 

Have a good day, everyone, and enjoy your booked holidays those who are going away soon.

 

Barton. x

nicky08
Community Champion

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

By the way the higher the urea content of the cream you use the better it is at moisturising. So flexitol and Boots equivalent are 25% whereas udderly smooth even with urea is only 10%. Just thought this might help. Also check out your local £land shop I have picked up some very good dry skin cream from there before which helped with my hands during the day as it absorbed really well. Trouble is they don't always have the same items in. And ask your oncologist for Vit b6 (pyridoxine) tablets, they should help if it gets too bad.
All voiced from experience!
Nicky x
Ps great news Barton 🙂 any good news is always a boost to you, and others on the same drugs. Celebrate!

2catlady
Member

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

Hi,cap gang,just thought. I let you know about a cream my sister got me. It's Burt's Bees,ultimate care hand cream for extremely dry hands. It's a little greasy but fantastic for night or when your sitting. I put it on ,then gloves and watch TV at night and put it on at bedtime too.
Hugs,Helen xxxx
2catlady
Member

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

Wow,Barton,that's fantastic news,you go girl xxxxxx

Hi,bev,enjoy your meeting. Let us cap ladies know any tips you pick up . You and and Barton will make a matching pair with your rash ,one on left and one on right leg. Xxxxxxxx
Huge to the cap gang,Helen xxxxxx
Bevlaar
Member

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

Thanks pam and barton for the advice. Yes my rash is raised and purplish but is around my left foot ! Nothing on the right...yet! Pam thats interesting too about life cover.
Off to the bcc meeting in morning. Guest speaker is talking about side effects i believe. Right up my street
Love bev xxx
bertie1
Member

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

Hi Barton that's excellent news on your ct scan hope it works as well for me and everyone else on it.
Kaye xx
Barton
Member

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

Helen, thank you so much for that information.  Will have a look ASAP!

 

Onanother note-

Good news this afternoon regarding my CT scan results - there has been a significant reduction in all areas! I cannot tell you how relieved I was. This was after just 3 cycles of Cap.  Wishing such good luck to everyone.Barton.x

 

Sweet-Gemzie
Member

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

 
pam01
Member

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

AND FINANCIAL ISSUES...........

hope this doesnt upset anyone...but something to think about for those who are 50 or over.....

Reminded by feature on Rogue Traders this morning....see how I spend my time!!!

Worth thinking about over50s life cover......although for most people poor value...if you have a limited life expectancy might be worth paying into to....ASDA policies(and probably others)cover after a year.....and if you die in the first year your family get all the premiums back.....When i took this out about 18months ago the payouts were better than they are now.....but my thoughts...if i die within next 20 years or so the family get more than ive paid in.....If i dont well ive won anyway even if carrying a small financial loss!!!

pam01
Member

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

instead of using cotton gloves I tend to use cotton "footies".........I have loads around so cheap! and keeping figures together and hand curled tends to keep them better moisturized!

bertie1
Member

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

Helen yes you certainly have to laugh or you would cry,we certainly can,t let it get us down.
Pam thanks for the tips about flexitol sending my OH out to get some and gel insoles for my feet,certainly wish they would hurry up with my pip cos I'm spending a fortune on all these.
Barton I ordered my gel socks and gloves off eBay,I think you can get them off amazon as well.

Take care all I'm going to rest today and put my feet up as I seem to be more tired today as well
Kaye xx
2catlady
Member

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

Hi,Barton,I got mine off amazon . Only £3.95 free p and p. they also do gel gloves too. I got my cotton gloves from £1:00 shop two pair in box.
Hope this helps,huge hugs,Helen xxx
2catlady
Member

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

Hi,Kaye,glad they are a bit better for you.yes,sometimes you have to laugh or you cry.
Huge hugs ,Helen xxx

Pam,thank you for tips,I'll get some flexitol.
Huge hugs,Helen xxxx
Barton
Member

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

Bevlaar - yes, I have had a rash.  Well, 2 kinds of itching areas actually.  One was a raised purplish area around my right ankle (and only my right), which was helped tremendously by liberal applications of Savlon (my sisters idea, as at the time we thought I had been bitten by something), and which eventually went completely.  This was cycle 2.  On Cycle 3, the same area came up again, but not quite so badly, but I also had a bright red itchy area on my right shin (heaven knows what Cap.has against my right side!), which gradually spread downwards a bit.  This was also helped by Savlon, and has now gone - dying down I think towards the middle of the third cycle.  Am currently rash free!

 

On a side note, can you lovely ladies let me know where you get the socks (gel socks?), please?  I can't bear hot feet and am constantly putting them out the sides of the duvet, but I fear my feet may crack, etc, and would like to be prepared.

 

Hope everyone is ok, and good luck with current cycles, etc.

Barton.x

bertie1
Member

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

Morning ladies thanks for all your advice,the feet are not so red and sore this morning but I think ill rest up today and not be on them too much as this seems to help.
Helen this cancer lark certainly is glamorous,good job we can see the funny side as it keeps us going .

Love
Kaye xx
pam01
Member

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

A couple of things to add to all this useful advice.

I use a thicker, more greasy cream at night which the hospital agreed was useful and  and which my GP prescribes...cos I get through quite a bit!.....flexitol heel balm....I use it on both hands and feet.

When my feet are painful and Im trying to walk on them I alternate the shoes Im wearing...in particular when the heels or soles are painful....I use MBT type shoes because the weight passes through the midsole which spares the other parts of my feet.

Bev I get very itchy and spotty areas betwen the red skin and the ordinary skin on my feet and at times Ive scratched them raw!...unfortunately the socks/warm feet at night dont help....I asked my onc if I could use a steroid cream on it......and he said yes ...sparingly....so i buy 1% hydrocortisone to use which helps.

2catlady
Member

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

Hi,Kaye,lol,me and you in our socks and gloves . It's all glamour this cancer lark.
I hope they work for you and feet settle.
Hugs,Helen xxxxxx
bertie1
Member

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

Hi ladies thanks for all your tips I will be going to bed tonight with my cream and socks on not a pretty sight but needs must.Udderly cream,gel socks and gel gloves ordered hopefully this will all help.
Love
Kaye xx
2catlady
Member

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

Hi,bev,glad it works. I used Vaseline when I cooked a lot as flour used to dry hands out. So that's why I started putting it on feet at night and hands with my cotton gloves. God knows what hubby thinks! Socks and gloves at bed time not an alluring look lol.
I haven't had any rash. Well apart from the blinking itchy one from rads lol. Have you taken an antihistamine that may help.
Hugs,Helen xxx
Bevlaar
Member

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

I found the vaseline and a cotton sock before bedtime works wonders for me.  I've also developed a raised purply red itchy rash all around the ankle and achilles heel area. Has anyone else had this problem?

Love bev xxx

geordiex
Member

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

your welcome funny to walk in ,but you could smother your feet in cream and put cotton socks on while in bed too x

bertie1
Member

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

Just ordered Geordie.
Thanks
Kaye x
geordiex
Member

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

just looked on ebay £3.95 free post x

geordiex
Member

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

matalan is where I got mine I still have neuropathy a year after last taxol but lost all finger and toenails too back now though xx

bertie1
Member

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

Hi Geordie where do you get them from
Kaye x
geordiex
Member

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

try the gel socks work quite well at bed time xx

bertie1
Member

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

Hi Geordie this is the one I have been using but they are still red and quite painful to walk on ,the BCN will ring tomorrow to see how they are then
Kaye xx
2catlady
Member

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

Hi,Geordie,that's what I use the udderly smooth. I have the extra care with urea,the foot one and hand one too.i carry a tube in my handbag too. I've never had such smooth hands and feet!
Hope you are doing okay,take care ,Helen xxxx
geordiex
Member

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

and heel and foot syndrome

geordiex
Member

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

try Udderly cream I used it while on taxol last year can get a huge tub on ebay for less than £10 its for all conditions and indicates chemo dryness ,chemo ward gave me some last year xx

bertie1
Member

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

Hi Helen and Monica thanks for the advise it's greatly appreciated.I rung my BCN and she said keep moisturising them and she'll ring me tomorrow to see how they are and they might have to reduce the dose.
Love
Kaye xx
2catlady
Member

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

Thank you Monica ,great tips xxxx
Hugs,Helen xxx
Moneck
Member

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

I was given these tips by a friend who was a chemo nurse, be kind to yourself!!

 

Hands & fingers - ALWAYS use an oven glove, mitts or a cloth when handling hot dishes & food. Plastic dishes from microwave can catch you out, also jacket potatoes, toast etc. Use scissors to open 'pull apart' packets and kitchen roll or cloth when opening plastic containers e.g. coleslaw & some desserts.

Protect hands when removing items from the freezer or playing snowballs!!

Try not to shake hands with people, my friends touch my wrist or back of hand, with strangers I just say "Sorry, sore hands" and leave it at that.

 

Feet - place a pillow under legs but above ankles, easier if you sleep stretched out, this means your heels & sides of feet are off the mattress and won't get rubbed. This can also be done on the sofa or reclining chair.

 

Mouth - Don't drink really hot drinks allow to cool to a comfortable temperature.

Hope this helps,

Monica

 

 

2catlady
Member

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

Hi,Kaye,apart from moisturising I'm not sure. Ring the chemo ward as they may tell you to stop before they become too sore or reduce your dose. Try to stay off your feet as much as possible. Mine are slightly red and a little tingly but not bad at all,touch wood. I'd get yourself a pair of crocs too as they are really comfy and take pressure off feet.
I don't sleep well either and I would say I wake more every night now than ever. It does say cap can disrupt sleep patterns ,god I'd love a full nights sleep,don't think I've had one in over a year.
Hope your feet settle,huge hugs,Helen xxxxx
bertie1
Member

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

Morning all my feet are quit red this morning even though I'm moisturising well and a bit sore to walk on ,has anyone got any advice.Hope you're all doing ok.

Love Kaye xx
bertie1
Member

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

Hi Bev and Helen I get the odd day where I feel really tired,but I'm not sleeping very good at night don't know if it's Cap that's interfering with my sleep pattern.Im going to try the Vaseline as well as my feet are a bit red today .

Love
Kaye xxx
2catlady
Member

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

Hi,bev,I'm having just the odd day of extreme tiredness where I just haven't the energy to do anything.even housework and anyone who knows me knows I'm OCD with house work!! I thought it was doing the rads and chemo together but it could be the cap! Very odd.
Yes,the Vaseline is making my feet lovely!! I could be a foot model lol
Hugs,Helen xxxx
Bevlaar
Member

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

Thats great news Stillhere! I have 2 lymphnodes involved too with my lung mets...hilar and paratracheal. After first ct scan (after 3 cycles) nothing had changed from my ct scan at dx in may. Hoping to see some change for the better in November after 6 cycles but reading that yours has taken a year...maybe I'm being a bit impatient.

Has anyone experienced tiredness where you sleep most of the afternoon?? I'm a bit worried about the amount of times I'm sleeping during day.
Today i felt do tired around 2 that i went to bed and slept for nearly 2 hrs....then an hour later i slept again for another hour. I'm still sleepy now!

This happens at least once a week while on cape.
Taking your advice about vaseline on heels. Some nasty cracking going on ...just on one foot!
Love bev xxx
bertie1
Member

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

Hi all don,t know if you all seen the news about new drugs trial for oestrogen positive breast cancer ,this certainly gives us all hope that there are new treatments out there being trialled for this disease

Kaye xx
2catlady
Member

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

Hi,still here,oh that's fantastic news,yippee! You need to celebrate now.
That's interesting about the week on week off. I'll mention that next time I see onc.thanks for that.
Huge hugs,Helen xxx
Stillhere
Member

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

Hallo again, just back from the Marsden and thought I'd share my good news! Over a year on cape and my hilar lymph node has gone from 2.5cms to 6mm, lovely Onc is very pleased at the progress! I asked him about my regime of one week on, one off which seems less than most of you and he said that American research has shown no difference in results but is much better tolerated.
Thought that was interesting and worth sharing. Good luck to everyone on cape, and hope it works as well for you x
bertie1
Member

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

Hi Helen and all you Cap ladies another sunny day today it certainly is lovely having this weather.Thanks for the tip about the Vaseline and socks I will certainly give it a go.Im off out for lunch today and having a nice catch up with my old boss who was sadly diagnosed with breast cancer herself a few months ago ,but I'm sure we'll enjoy we always have a laugh and a good old natter.

Love and hugs to you all

Kaye xx
2catlady
Member

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

Hi,Kaye,yes,the sun always makes you feel better. I've started to put a bit of Vaseline on feet after cream to try to hold moisture in and the same on hands. I put cotton gloves on while it's sinking in or in bed too and keep socks on in bed for a while as feet get too hot.
Enjoy your sun,huge hugs,Helen xxxx
bertie1
Member

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

Hi Helen good to hear your doing ok on your second cycle and the anti sickness pill works for you .Had a lovely weekend the weather was lovely hope it continues you always feel better when the sun is shining.The only problem I'm having is my feet and fingers are getting a bit red at the moment but I'm using plenty of cream on them and this seems to do the trick.

Take care Cap ladies
Kaye xxx
Bevlaar
Member

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

Stillhere...yes i think we all panic at time of tests and results. ..i know i do! Yes lovely sunny warm day in south wales....supposed to be getting warmer as week goes on too !
Im just finishing my 4th cycle tomorrow...bit of cracking on heel now but manageable.
Love bev xxx
2catlady
Member

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

Hi,cap gang,oh,still here ,glad you had a fab holiday and good luck for your scan. A years great,I hope I'm on it a year too.
Hi,Kaye,my second cycle is so far so good touch wood . I only wake up in middle of night feeling sick! I take a anti sickness pill and I'm okay.
Glad you had a lovely weekend. No sun in the NE just rain and fog.
Take care cap ladies,Helen xxxx
bertie1
Member

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

Hi still here glad you had a lovely holiday and good luck with your results tomorrow and I think it's only natural to feel frightened when you go for your results ,I know I am.Im only on my second cycle of Cape and just hope it works for me as it has for a lot of ladies on here.
Kaye xx
Stillhere
Member

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

Hallo to all the Cap crowd, just had a lovely holiday in Portugal, had scan on Friday, results tomorrow. Feeling frightened this time as I have been on Cap for over a year now, it's been brilliant with few side-effects, just want it to continue!! Am I the only one that panics before an appointment? IV chemo makes me very ill, had to give up last time. Good luck to everyone on Cap and all fingers crossed for our next appointments.