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Xeloda / Capecitabine - Your Top Tips, please?

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

Hello Moneck. What an absolutely awful time you have been having! Shame about the Cap, but I'm sure they will find something else that works for you. Rest up and have a good Christmas - let someone else do all the work! Drop in to the Christmas Eve party if you feel up to it. Cyber hugs. Barton.x

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

What a horrible time you've had Moneck, you doze and get your strength back. Since 2008 I have had some colorectal involvement, no symptoms as such, hope you start to feel stronger. I don't know if you have had it but Doxorubicin worked well for me. X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh,moneck,what an awful time you have had,huge hugs coming your way xxxxxx
You,rest up and take it easy.
Huge Christmassy hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Ladies I am back from hospital but will not be back on Cape. The alien in my abdomen entered and blocked my bowel. Admited on 17th Nov, surgery on 21st - they had difficulty getting me to clot so had the lots of packed cells and continuous pressure of surgeon for 45mins before I could leave recovery. Left ward for op at 09.00 back at 23.00. The tumour has complicated my recovery as ascites is leaking from the laparotomy site, at times I was losing a litre a day so have had lots of drips. Cannula no 10 removed last night, right arm very bruised. So now as well as stoma bag I have 2 drainage bags which will be attended by visiting nurses. Getting used to new diet which includes marshmallows and jelly babies!!

It will take me sometime to catch up with all of you as I doze a lot.

Moneck

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

Helen, feeling sorry for you - ouch! I find I have to shower and wash in luke-warm water, which is horrible (specially in this weather!). I also have to wear rubber gloves to wash up, which I hate, but hands are so sensitive to hot temperatures. I find wringing anything out very painful too. I think I read somewhere that heat and pressure makes the Cap leak out of our capilliaries (sp?) which causes the pain. Probably why walking long distances hurts so much.
Kaye, have a wonderful time with your son! You and he obviously both deserve it!
Best wishes to all the Cap gang. Barton.x

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

Thanks Belinda,I just didn't think. I'm very fair,blonde,blue eyed all from my Norwegian roots. It was a silly thing to do. Chemist has given me some burn dressing to cover it and warned me to look for infections !
Jo,I was put on zolodex injection,but no longer on them so I think it's put me into menopause permanently as haven't had a period since being diagnosed .

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

Yes I had my periods return for a short time. You may like to ask for the blood test, FSH, to check your pre or post meno status. I had fluctuating levels, was in perimenopause for a while. X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning all,
Thank you Margaret for your reply. It's really helpful.
Just want to put a question out there. I have been period free for 1 and a Half years until this morning!!! I have had FECT , TAMOXIFEN, LETRAZOLE and ZOLADEX . These seem to have stopped my periods until this morning. Does anyone still have periods on cape? I'm thinking this isn't good as it means my hormones are active a and my cancer is hormone driven! What do I do now?
Hugs jo

Helen - yikes! That sounds nasty ! Please keep a close eye on it! No more wraps for you! Xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning Cappers, ouch Helen, take care, I still look in here being a once long timer, four and a half years with Cap which stopped working in 2012. But just posting to say yes your skin is more fragile, mine still is even now and I have dark brown eyes, naturally black hair, I'm not fair skinned, had an Italian Granny, I have to be careful with hot water bottles and in the sunshine too. Hope you heal quickly. X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good morning Cap gang hope we're all ok this lovely frosty morning.
Helen I will enjoy every minute with him while he's home because I dont know how long he will be here,he's the one of the three boys who gets itchy feet to go travelling ,but he's having an amazing time and life is so precious as we all know so you have to make the most of it while you can.Hope your back gets better soon ,sounds painful.
Huge hugs to you all
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good morning cap gang,
Kaye,enjoy every minute with your "baby" when he's home.xxxxxxx

Feet still Christmassy red grrrrr.
I did a silly thing yesterday. I've always worn therma heat wraps for back. Back was sore yesterday so put it on and it's blistered all my skin on back. Skin must be more fragile on cap. I've got burn plasters all over back as they have burst and skin is raw,just hoping I don't get an infection in them.
Hope every one is okay.
Christmassy hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Jo, i had a patch of about5 weeks when i felt really unwell nausea, etc,(only just coming out of it) my situ is similar to yours, eg cap has shrunk my liv mets, and am due mri in january at the marsden. Have also,lymphoedema, which often gets cellulitis lately so wasn't sure about cause of feeling unwell. However, i have discovered s/e of cap can come and go...even after a good run of less s/e. Also they dont have any relevance as to how well it is working. Try not to worry. Oh and apparently severalfriends have had a virus which is circulating ...we need to remember normal stuff happens too!
Hope this helps

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

Hi Helen and Barton I am very proud of my son and it will be so good to see him.He,s going to have afew months off work after Xmas then decide where he goes next ,before going to Antartica he was in Australia working for two years and the company he worked for here in Wales have told him he can go back there anytime but I think he's got the Travel Bug so not sure if he'll settle back here.
Hope everyone is doing ok
Xmas hugs to you all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Jo,it is a scary time and we all think the worst and that's natural,every pain we think is progression xxxx
Your sickness could be the cap.im really nauseous on cap.
Try to not worry xxxxxx
Huge hugs,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi helen

Thanks for the quick reply. That's encouraging! Got it in my head my run on cap is finished! Hopefully I'm VERY wrong ! I'm sick of feeling on edge and scared!
Thanks jo xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Barton,good for you,you must have needed the rest.
And yes,you can add tinsel anywhere you like!!!!xxxxx
Wow,Kaye you must be so proud of your son. I bet your counting the days to see him again xxxx

Huge to everyone ,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,jo,I've liver mets and have awful pain where it is,so much I can't sleep on that side. It's like an awful ache. I had this before my scan and it wasn't progression but it had shrank .
Huge hugs ,Helen xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all

Haven't posted for a bit but still been reading posts.
I have a question. Please forgive me if this has been discussed before but I'm having a breakdown at the mo! I'm on cap and have just finished my 6th cycle on tues.i have liver mets by the way. After three cycles had massive shrinkage( hooray). However., the last few days and on and off through the cycle have had a dull ache on right side below ribcage where I imagine my liver is and feel really queasy. A) has anyone else had this ? And b) has it stopped working!!!! I'm working myself into a right state! Not due a scan until jan but seeing onc on tues at the marsden.
Any help appreciated
Hope all as well as can be. Christmas Eve party sounds a hoot!
Jo xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Kaye, yes, I definitely needed that sleep - I had another 2 hours this afternoon! That's fascinating about your son. He must be a very good engineer to be offered a position like that. And 18 months away - I can see why you are so excited about seeing him! Does he go back again after Christmas, or is this the end of his "tour of duty"? Hope eveyone is doing OK. Best wishes, Barton.x

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

Barton you certainly must have needed that sleep all this treatment catches up with you .
Helenhope your feet get better soon the onc reduced my dose because they got so bad.
Barton ny son is a mechanical engineer so he's out in Antartica with the British Antarctic Survey and he looks after all the machinery that they have on the bases out there so the scientists are able to use these vehicles to do their research.He,s been out there for almost 18 months so although I speak to him regularly I am really excited to see him
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Wow! I can add the tinsel anywhere I choose? I'll have to think about that one;-)! I'm having a duvet day because I was told not to come to work on Friday morning as I got so emotional and upset on Wednesday afternoon re the ever expanding backlog of work (and no help in the foreseeable future!). I must say, not having to go in this morning has been a Godsend! I slept until 9 when my alarm went off for the Fragmin injection, then slept again until 10.30, then dozed on and off until about 11.30. I hadn't realised just how tired I really was.

Anyway, enough of that. How is everyone else? Helen, your feet seem to be giving you a really bad time this cycle - which one are you on now?

Kaye, glad your feet and hands are a little better now. I bet you are really looking forward to your son getting home! If I may ask, what does he do in the Antarctic? Is he a researcher of some kind?

Love and hugs to all. Barton.x

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

Hi,cap gang.
Hi,Kaye and Barton .glad your feet on the mend Kaye .
My feet as still hot and robin red! One week of cycle to go yippeee!
I get a very strange sensation near my ankle ,it gets really hot as if I'd been standing to close to fire,very odd sensation. It just comes and goes!!
Barton,I'll leave the tinsel for you to add xxx
I must admit I put socks on as feet are sooooo greasy with Vaseline but have to take them off after a few minutes as can't sleep in socks too.
Hope,you are okay,or are you just having a duvet day?
Oh Kaye,I bet you are soooo excited for your son coming home. He'll be coming home to what feels like tropical weather after Antarctica !!
Huge Christmassy hugs,Helen xxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh Helen! That is a generous offer! And tinsel anywhere I choose - oh my!!!
Hope your feet are better today for all those with sore feet - I need to grease mine today too, but can't at mo as I'm in bed (can't do socks in bed - yuck!) having a duvet day. Must get up some time today though.
Love and cyber hugs to everyone. Barton.x

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

Hi Cap gang hope we're all doing ok.
Helen my feet and hands are much better this morning hope yours start to recover soon.
Getting excited now for Xmas and Hols and it's only 9 weeks till my son gets home from Antartica will be so happy to see him.
Take care all
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Good morning cap gang,
Barton,I'll bring mr GC just for you,do you want him with tinsel or without lol I can tie it anywhere on him!!!

Kaye,I'm waking in night to cream feet. I think it must be evaporating with heat lol. If too many people need to be around Belinda's log fire we can get our feet out so people can roast their chestnuts on them lol
Oh wow,to Christmas then Tenerife . That will be fantastic and lovely and warm too.
Huge Christmassy hugs,to all the cap gang,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Helen my feet are really red and yes they do look like they are sunburnt and they tingle so creaming them constantly. Hope yours are a bit better ,I'm on my week off now so hopefully they will recover..
Barton great news on having a chemo break just in time for Xmas and all the nice food and goodies.
Looking forward to our Xmas eve party thread,then a lovely xmas day and then off to sunny tenerife for a week.
Hope everyone else is doing ok
Take care all
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh, thanks, Helen! That sounds wonderful - non-alcoholic mulled wine -yum! I'll bring some party food! I don't have any pets, but like the sound of Daniel Craig in tinsel. You aren't sharing Mr GC, though? I have to say, I don't blame you for that. If he were mine, I would be keeping him home, too! Love and hugs to all. Barton.x

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

Hi,Barton,huge hugs, we are all allowed to have emotional days xxx but fantastic news about results,go peachy devil pills xxxx
Great you are getting chemo holiday and you we be able to recover and enjoy Christmas xxxx
Belinda is going to start a new Christmas Eve party thread so every one can join in and everybody is welcome xxxx there are cats,dogs,Daniel Craig ( only dressed with a bit of tinsel ,my contribution lol) and anything you want to bring. Non alcoholic mulled wine for you if you fancy .
Huge hugs,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Forgot to say, I could bring food to the party! Barton.x

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

Hello Cap gang - Kaye, sorry to hear you have a nasty cold and hope you are feeling a bit better today. Hele, take care of those Festive Feet - I hope they are feeling better today, too.

 

I saw Onc this afternoon, and told him about severe breathlessness and tiredness (burst into tears on Monday at dentist, and then in the Tesco Metro in town - so embarrassing!, then at work yesterday afternoon. They sent me home early and told me not to come in for my half day tomorrow-will have a duvet day tomorrow). He said as my last CT scan results were good, that he would give me 6weeks off the chemo! I had been going to ask for a lower dose, but a chemo Hol will be better. I have been given a new appointment for 22nd Jan next year. So I may be able to taste Christmas dinner after all! That will be one of the best Christmas presents ever! All the best to all the Cap gang. Barton.x. PS: I don't like alcohol I'm afraid, but I should be able to taste a nice apple juice by then - could I join the party on the Bone mets thread, please?

 

 

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

Hi,Kaye,lovely to hear from you Kaye,sorry you are full of cold ,not good on top of SEs too xxxxx
My feet have just gone bright red after a couple of days into cycle,yikes! I hope they last until end of cycle . It's like having bad sunburn on soles of feet!! I think I'll put some tinsel on them as they look very festive lol
Huge hugs,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all haven't posted for a couple of days as I'm full up with a cold and been feeling rough.
Hi Helen my feet are really red and sore it always happens towards the end of taking tablets last day tomorrow but I still find they are like this for a few days after I finish as well,so I sympathise with you.
Spurs good luck with your scan results the waiting is the worst.
Barton hope you're doing ok and the rest of the Cap gang
Love
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Sorry, Spurs - good luck for the CT scan results as well. Can only blame chemo brain for forgetting! Best wishes, Barton.x

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

Hello, Spurs, good luck for the results of your bone scan.  We all sympathise with you regarding the waiting for results- it's a most tortuos time, isn't it? Good luck with the last week of tablets and I hope you get a relief from the breathlessness and tiredness - we can all sympathise with that as well! Barton.x

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

Fantastic,and long,long may you continue to be NED xxxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Helen, I had no evidence of disease so it was kind of belt and braces at that time, these scans determine the next steps. So will find out more next week.

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

Evening cap gang.
Barton xxxxx

Yes,we are all going to sit around my feet at Christmas toasting marshmallows and roasting chestnuts. It will save on heating bills lol.
Spurs,good luck with your scan ,yes,it's hard not to worry. You will have fantastic results . Why are you only having 6 cycles? Or are you just having a break?

Huge to the cap gang,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Had a ct scan yesterday and bone scan today and seeing the oncologist next Thurs for results....so the waiting begins. Trying to keep busy and not worry but as you all know easier said than done. On my last cycle of the 6 cycles so one more week of tablets to go -  i can't wait for a break, i am also feeling breathless and very tired. It has really helped me finding this thread so thank you all.

 

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

RTThanks for the reassurance, Helen.  I needed that.  Yes, I thought it had gone very quiet on here recently.  Come on Cap gang - get posting! 

 

Helen, so sorry about your feet - I expect you feel like you are walking on burning coals mixed with broken glass and razor blades, don't you?  I know that feeling - absolute murder to move around!  Hope they recover quickly.

 

Best wishes to all the Cap gang.  Barton.x

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

Good morning cap gang,how are we all doing?

Barton,you won't have lung mets as he would have told you,so don't worry. The breathlessness could be your red blood count low which can cause anaemia,cap makes all my bloods take a hammering But mention it too him xxxx

My god,my feet look like I've painted them red for Christmas today. I could roast chestnuts on them lol ! So burning hot. .

Pam I do pop mine into a cup only because I need to keep an eye on Little devils when I pop them out. I'm sure they are sealed in Teflon steel as it's a task in it's self to pop them out!! Once I've done my iron man task getting them out they fly out at high velocity ,hence pot to catch the little devils in lol.

Hope every one is doing okay as it's gone very quiet on here.
Huge hugs,Helen xxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Helen. No, I don't take Denosumab as I don't have bone mets. My mets are in my womb, and a couple of lymph nodes under my left arm. I'm assuming that the breathlessness is caused by the Cap. If I had got lung mets, I imagine my Onc would have told me - should I ask, do you think, just to be sure? I will be telling him about the breathlessness though, anyway, on Thursday. Best wishes to all the Cap gang. Barton.x

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

Barton,so pleased your letter came,yippeeee! To great news xxxxxx you can officially celebrate now ,you go girl xxxxxx

Do you take Denosumab as I read on cancer research uk that first side effect is breathlessness! None of onc nurses knew that!! Also muscle and joint pain,which I'm getting in bucket loads .
Hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Helen, thanks for that but today (yes, today, Monday 8th Dec!), had a letter from Registrar - dated 27th Nov - to say that the Radiographers have confirmed that there is no progression and that he will see me in a couple of weeks - he's actually seeing me this Thursday! Anyway, it is wonderful to have the official confirmation that all is well, so I shouldn't really complain. I have decided I'm going to ask for a lower dose this time, as I'm having dreadful breathlessness when walking even a short distance. The Registrar offered me a lower dose last cycle but I declined as I was worried it wouldn't work so well, but having read a bit on-line since, have decided to give it a go if they will let me.   Jojo, sorry I can't do a new paragraph on the tablet (I lose the entire post if I try). Anyway, welcome to the Cap gang Jojo. Re your question about your eyebrows -funnily enough, I have found that my hair has thinned quite a lot (possibly combination of other medications - I know my hair thinned a bit on my blood pressure tablets) but my eyebrows seem to have gone wild! Hope that reassures you a bit! Best wishes to all Cappers. Barton.x. Ps: Helen and Bev, hope you both enjoyed your celebratory tipples the other day!

 

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

Barton,knickers if they are busy,you ring as we have enough worry in our lives without added anxiety of waiting for results xxxxx

Jo.well done for getting through all that @@@@ .your eyelashes should grow back on cap as it doesn't cause hair loss. I'm not sure how long it will take though,sorry. Hopefully it will be quickly. Have you tried false ones in meantime as some don't look like dead spiders and are very natural looking .

Huge hugs ladies,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

That's cape ladies, iv just finished 18 doses of taxol and avastin, kept my hair as had cold cap, but eyelashes have fallen out, do you think they will grow back on Cape, and if they do, how long will it take?

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

Thanks again, Helen. You are full of wise advice! I'll try to remember that (advice re cycle differences).  Regarding results, I would ring Oncs secretary, but I know how busy they are and don't want to bother her. I'm seeing him in less than a week now, so am trying to be patient. Best wishes, Barton.x

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

I was told this by pharmacy when i started on the tabs and was given a little plastic pot to tip them into and take from there...usually I just break the tablet foil seal, bend it back and take tablet into mouth directly....actually I dont think there is a lot of evidence that capecitabine causes a lot of probs...although some chemo tabs do cause probs with your hands......you pays your money and..........!!xx

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

Barton,I'm sure he'll let you off one day. You need to be able to enjoy Christmas dinner and Christmas
Remind him he was supposed to send them out to you. He's just forgotten so don't worry xxxxxx
So sorry this is a had cycle for you xxxx remember each one can be different so you are due an easy one.
Huge hugs,Helen xxxxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks, Helen. Enjoy the wine tonight! Glad you are still on cloud 9! Hugs, Barton.x

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

Thanks, Belinda. I hadn't heard it before either. I will check with Onc next Thursday, though. I already have a list almost as long as my arm to ask him this time. I am hoping he will reduce my dose slightly - having a hard time this cycle. I also want to ask if I could have only 13 days tablets instead of 14, so I can finish Christmas Eve instead of Christmas day (would love to be able to taste Xmas dinner, although not sure if one extra day will make that much difference - lower dose might, of course!). Plus, I still haven't had official results of last CT scan! Hugs to all Cappers. Barton.x