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Xeloda / Capecitabine - Your Top Tips, please?

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

Hi SarahLousie,
Sorry you've had a bad start with cape. I was lucky and only had very mild SEs. But if you look back through this thread, you'll see that a lot of people have seen a great improvement after their dose was reduced, so hopefully this will work for you. A 20 percent reduction is standard in the first instance, I think. Also some of the SEs, especially nausea, do get better of their own accord as your body adjusts. Have you got some anti nausea pills?
Best wishes for feeling better soon. Hang on in there!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Sarah

I am on Capecitibane and have a few days left of cycle 6 but that's in conjunction with the evil Docetaxal. I have had awful hand & foot syndrome all the way through but mainly on my hands. They looked like they'd been scolded in hot water and then the skin would spilt. My chemo nurse gave me some cream which helped a bit but she also heard udder cream worked. Hope this helps.

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

Hi Sarah

First of all, welcome ( not that you particularly want to be here, I know). Sorry to hear you are suffering with so many side effects. I have just finished cycle 13 after re- starting Cape last September, but I do remember feeling awful after my first cycle and, like you, I was very tired. It is only recently that I have had sore feet, but Udderley Smooth cream ( you can get it on Amazon) has helped enormously. In answer to your question, I had two dose reductions which helped a lot. I am now on 1,500 x2 a day. I have to say, after 13 cycles, I am not feeling too bad at all. My only worry now is that it will stop working for me; It has certainly been successful in getting rid of most of my liver mets.
Make the most of your week off and I am sure you will feel better after a dose reduction. Please feel free to ask any more questions if you have any, especially as there are lots of lovely ladies on this thread who will be happy to help.

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

Hello Sarah

I'm not on cape but do dip into this thread to keep up to date with things. At the moment I'm on exmestance and everolimus ( my devil pills) but if after my next scan they are not working. .cape or vineoribine will be my next line of treatment.

I'm sorry you are struggling. ..all new treatment does cause problems but a lot of the ladies here do get a good quality of life once they settle down with the right dosage ..that seems to be the key to it.

Sending hugs and hope u feel better as time moves on ...

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

HI

I have just finsihed my first cycle of Capecitabine. I have never felt so awful. I think I had all the side effects listed but the worst was the nausea and exptream tiredness. It was all I could do to go from bed to sofa. Now having had a few days off I am starting to get energy but I can't walk due to the massive fluid blisters.

 

My consultant has reduced the does by 20% but I am not confident that this will make enought difference. 

 

Has anyone experienced similar.

 

Thanks

Sarah

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

Hi Mulligans I’m completing cycle 6 of Capecitabine now been on it since early Feb 18.
My feet are pink underneath and have a burning sensation. My hands are dry all the time. I have found Cetraben moisturising cream on prescription good.
The Udderly Smooth Cream with 10% urea is not on prescription I believe (?) ( made in USA).
It absorbs very well on my feet. Main SE for me are extreme tiredness and insomnia.
Also have dry eyes and nose, and heartburn. I have prescription meds to deal with all these.
Judith xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

To the new people. I had a horrendous cycle 2 after breezing through no.1. My hands burnt and started to peel. My feet lost layers of skin. I ended up having to cut the peeling skin off with a medical scissors my nurse had given me. Dose was reduced on cycle 3. Feet and hands much better. Peeling has stopped too. Keep moisturizing your hsnds and feet. I must try the udderly cream!

Got scan results from 3 cycles of cape. Good news. It has cleared a lot of the multiple tumours in my liver. Bones stable too. Onc very happy. We continue on with cape. I didn't have a as good a result on abraxane but i suppose it depends what treatment works best. Im hoping this good luck continues on. Hoping to book a little sun holiday now the first scan is over!

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

Hi Tatyana,
Thank you for your reply. I don’t wake up in the early hours, the issue is getting to sleep initially. As my brain won’t switch off!
I’m 61yrs and thinking about retirement on medical grounds now. I used to work in London and had a 3 hrs daily commute on public transport. For that read a crap service with Southern Rail.
I’ve always had loads of energy until chemo. which is what I find so frustrating.
I did an 11 miles walk last Oct and now get out of breath going to the shops.
I don’t take afternoon naps as get up pretty late morning at present.
Though I’m trying to organise some activities per week so I have some kind of focus, other than day time TV with the cat on the sofa.
I make myself go out for a walk each day. Joined a keep fit group local authority yesterday evening to try to reduce BMI.
I also visit the local Macmillan Horizon Centre which offers support such as counselling ( invaluable) and complementary therapies.

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

Hi jmp,
Oh I do feel for you with the insomnia. It's so tough when you are so tired yet can't get enough sleep. Do you find you wake up in the wee small hours and then can't get back to sleep for all the stuff buzzing around in your brain?
I find meditation tapes sometimes help, otherwise I give up and read my book, and I often have an afternoon nap, I'm lucky in that I'm not working now and can doze when I like!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi All,
I was given a sample of Udderly Smooth cream with 10% urea by the Chemo Nurse at Chemo Dept. It absorbs well. I’m getting towards end of cycle 6 of Cape. Main SE are chemo fatigue and insomnia:-/
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi pate1,

I have lung mets diagnosed Autumn 2016. At that time I had a really persistent cough - couldn't get through a sentence without coughing! My initial treatment was Letrozole and, after a few weeks, as the tumours shrank, the cough resolved. It has never returned.

Best wishes,

Maggie

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

Teresa, I had the sore hands thing very badly with docetaxel, but only slightly on cape. I swear by the cow cream too!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Pate

Welcome to the Cape thread. Sorry, can't help with your lung mets question as I have liver mets.Perhaps one of the other ladies might know more. Good luck with the treatment; it is one of the more manageable ones.
Have a good week

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

Hi Teresa, funny you should mention Udderley. Amazon van larrived today with a tub for me so will let you know how I get on. I have been using Flexitol, and have used Udderley in the past, so we will see. Feet are bright red. Hope, now you are on one chemo, your feet and hands will improve.
Have a good week

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

Hi George

My hands get red raw already and then split and flake. Hosptial gave me some cream which helps with the itching. They said udder cream (yep what milking cows have applied to their udders lol) can work too apparently. My feet just blister easily and the skin tears. That's on top of sore and blackened nails but I think that's the other chemo drug I am having. Chemo just likes to give doesn't it? 😉

I checked what dosage of Cape I am on amd it's 1800 x 2
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi

I've just started on Cape a couple of days ago....interested to know if anyone had a bad cough due to mets in their lungs and if so did the Cape help. (My onc thinks that my lungs are being irritated by the mets there giving me a horrible cough. Have been prescribed liquid morphine which helps).

 

Keeping evrything crossed that the Cape works!

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

Hi Teresa

Just wanted to echo what others have said really. Cape is a very manageable drug which has enabled me to get on with life, just back from a lovely mini break in Madrid. 😊Through choice, I don't work but suspect it would be okay to do so depending on the nature of your work and the dose you are on. I struggled with the higher dose, but have been much better on 1,500 x 2. I am now on cycle 13 and have to admit hands and feet are becoming sore; however, I soldier on as we all do. Hopefully, you have a good employer who will make some allowances.
Mulligans, know how stressful waiting for results can be but, at the risk of sounding like Pollyanna, scans bring good news too. I find the waiting room part the worst, just sitting watching every time the onc's door opens and, as you said, it never gets any easier.
Hope you are all enjoying the lovely sunshine. 😎

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

Hi Tatyana

I am currently on both but it's so good to know cape shld be a walk in the park compared to Docetaxel. Thank you x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Teresa, if you are currently on docetaxel, take it from me, there's absolutely no comparison between docetaxel and capecitabine! It will take a few weeks for the docetaxel side effects to wear off, but don't worry, once you've got that fiendish drug out of your system, cape will be a walk in the park! Not that there are any guarantees, but most people here seem to have tolerated it very well. I hope it works well for you!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Paula and Tatyana

Your responses make me feel more confident if the Oncologist does just keep me on Cape and not the regime I am currently on that it will be more manageable. I hope so as by the time I finish cycle 6 I will have used up 3 mths sick on full pay. I have managed to work some days but not as many as i had hoped to. Just have to wait and see what the Onc says.

Thanks again

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

Hi Teresa, sorry to hear about your recurrence, it's tough. I found capecitabine very doable, I pretty much carried on as normal. It was hugely dehydrating, I was constantly thirsty and my skin needed gallons of moisturizer, and I did have some fatigue which tends to build up after a few months, but it was manageable. If you do suffer from fatigue, the best advice I was given was, don't keep going till you're exhausted, but take a break before you need it. Even a 10-minute rest can recharge the batteries. Good luck and stay in touch!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Teresa

Sorry to hear your news about recurrence and secondaries. Wishing you all the best and sending hugs.

I took Cape for 20 months and and had a few SE in the beginning but after reducing dose to 1500mg twice a day i found it very doable. My main issues were constipation which was probably exacerbated by other meds and fatigue which may have been caused as much by the cancer as it was by the Cape.

I actually gave up work but I probably could have carried on as my employer was very good about time off for hospital appts and flex working when the fatigue was bad. In the end though I was lucky enough to be able to afford to stop and that was the right decision for me.

Good luck, let us know how you get on.

Paula

 

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

Hi all

I have just come across this thread about Capecitabine .

In Dec 17/ Jan 18 I was diagnosed with a local recurrance in my reconstruction (this is the 2nd recurrence) and secondary tumours else where. I am just about to start my 6th cycle of chemo which consists of Docetaxel followed by 14 days of Capecitabine. From what my oncologist has hinted at he may leave me on the tablets and I was wondering if anyone can tell me what the side effects are like when just taking this drug? Especially with regards to managing work. I know everyone reacts differently.

Thanks in advance for any support given

Teresa

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

Hi Mulls,
No, the waiting for scan results never gets easier, even though you think you should get better at it after all this practice! Will keep everything crossed for you., Let us know how it goes. 🌷
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nicky and tatyana sorry to hear you have had a little progression. Lets hope the new treatments will kick it into touch. Just had my scans after 3 cycles
Dont results until next week. Feeling very unsettled and nervous and not sleeping great. I know thats normal but scans never get easier do they! Hope you are all keeping well.

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

Thanks Tatyana, happy belated birthday sounds like you had a lovely day. Hope you have a good weekend too and that the weather stays nice.

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

Hi Nicky, thanks for the encouraging words about gemcarbo! I don't have a start date yet but probably the week after next. So I'm enjoying an extra"week off"! I hope you get on ok with the eribulin and enjoy your holiday!
It was my birthday yesterday, we went to the theatre to see Midsummer night's dream, it was hilarious. The sun came out for the evening even though it had been a gloomy damp day. Tonight we're going out for dinner with our bestest friends who have been SO supportive.
Enjoy the holiday weekend everyone!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks all, Hopefully I will get on okay with Eribulin and have few side effects.  Tatyana, I was on gemcarbo before cape and found it okay, I had gemcarbo day 1 then a top up of gem on day 8, I think I had a little nausea and that was it. When do you start? I should start cycle 1 next week.Good luck. I also have lymphodema in my arm and will have it wrapped everyday except weekends for two weeks to hopefully move some of the fluid, I will also get a sleeve. I am going on hols soon so will also ask about antibiotics, not the best time to be changing chemo! Hi withasmile, are you still on Eribulin? Thanks everyone for the advise. I'm not sure why it took me so long to join a thread. Nicky
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Tobyjoe, thanks for the kind wishes. There's a lot of hope to be found on this forum, as well as support and hugs for the times when hope is hard to find. It makes such a difference!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi tatyana

 

Sorry to hear your news.  Hope everything goes ok with the new treatment and thank you for your advice, it has given me hope xx

 

Tobyjoe 

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

hi Nicky,

 

I transferred from Cape to Eribulin and it was heaven- the SEs so mimimal in comparison, and Cape was easier than my previous chemo too except I  suffered dreadfully with my hands and feet.

 

Good luck

x

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

Lindyloo,

 

iam on prophylactic pen vfor my lymphoedema...does seem to help keep the cellulitis in check..though I don’t want to tempt fate....prof mortimer recommends this if you have more than 1 bout of cellulitis a year, I also have antibiotics ‘in case’. And I have to say that one worry I have is that I lose a nail on that hand...as obviously I’d get cellulitis....butam travelling hopefully on Paclitaxel l

 

best wishes

 

Moijanxx

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

Nicky, let us know how it goes with eribulin. I'll be on gemcarbo. Goodbye to cape, and good luck to us both!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Sorry to hear that, Nicky but best to move on if treatment is unsuitable. I have heard good things about Eribulin and know there is a thread on here.
Good luck with your new treatment

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

Hi all,

Thanks for all the advise. Unfortunately, cape has only worked on some of my enlarged lymph nodes and not the ones that have recently appeared near my lungs. I am no longer on cape and will start Eribulin next week. No more hand and foot syndrome 😊, hopefully the new SE's will be managable.

I wish you all the best with your ongoing treatment.

Nicky

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

Hi Lyndy

I think my oncologist suggested the antibiotics just in case. I am sure your onc will oblige 😊We all need a little holiday now and again😎
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatyana, sorry to hear Cape us not working for you. At least you had a lovely holiday before the news. We will miss your positive outlook so please do keep us posted. I am sure your next treatment will be the one for you.

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

Afternoon Tatyana

So sorry to hear cap has not worked for you. Pleased you were able enjoy holiday in Greece before receiving the horrible news.

Good luck with your new chemo.

Linda

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

Hello friends,
Sad to say I won't be around here much from now on, as cape isn't working for me. Scan results showed some disease progression, with nodules in left (previously unaffected) breast and some little ones in lungs. So I'm switching to IV gemcarbo. Wish me luck!
It's quite annoying as I've been feeling pretty good on cape and have been able to travel etc. But if it's not working, there's not much point! Good luck to all you guys, and I'm sure I'll keep popping in to see how everyone is doing! Love and hugs.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Evening Tatyana

I have lypmphoedema in one arm since 2010 never been prescribed anti biotics just in case. The thing I got from lymphedema clinic was a arm sleeve. I don't tend to wear it much apart from when I travel on an aeroplane . When I was at work at use to wear it all the time. Very uncomfortable though..

George enjoy Madrid next week. Your oncologist seems really good. In the beginning did you ask to be prescribed anti biotics just in case? When I go to see my oncologist on 11 June I am going to ask for some anti biotics. It must be reassuring for you if anything did happen abroad you already have tablets with you rather than having to find a doctor or hospital .

Enjoy holiday.

Linda

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

Lyndy, after my first cancer in 2002 I developed mild lymphoedema in the arm. Because of this, I was prescribed just-in-case antibiotics, in case of cellulitis, and I've always carried them when travelling ever since. (I get new ones every couple of years when they expire!) I've never had to use them, but it's reassuring, in case it takes a while to get to a doctor! (I hope I haven't tempted fate, too!)
George, enjoy Madrid! It's on my list...!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Glad you had a good time in Greece and hope you get your holidays Lindy and Tobyjoe. I am off to Madrid on Sunday until Wednesday. Week off this week and onc has given me a few extra days as feet getting sore at the moment.
Antibiotics are a precautionary measure, Lyndy. I have never had to use them ( Hope i haven't tempted fate. Yikes). Weather here has also been a real tonic. It has been so nice to wake up every morning to sunshine and blue skies 😎
Enjoy the rest of the week

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

Evening Tayanna

Pleased u had a good holiday in Greece. Just wondering did your oncologist prescribe anti biotics like George mentioned?

I normally go abroad twice a year not been since starting Cap in October. You have given me reassurance I will be hopefully OK to travel.

Linda

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

Tobyjoe, I'm just back from a week in Greece with lots of sea swimming. It did me no end of good. I hope cape and your onc are kind to you and you manage to get away soon! Needless to say I was extra careful with hygiene, sunscreen etc, and I was absolutely fine.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone, thank you for your advice.  Just finished my first cycle so have now got a week off tablets.  I’m seriously thinking about going to see my daughter and returning to work, going to wait and see what bloods are like next week.  My oncologist wasn’t too keen with me going to Greece last year so hope he will be ok this year.

 

Tobyjoe xx

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

Hi Toby joe, I was on capefor21/12 and wish I’d been more adventurous...wanted to go back to Oz, which would have been quite possible...other than I was studying art at uni and also my partner didn’t want to go...,so kept putting it off...now I’m on hv chemo most of the time and that has limited my options.,,,you sort your insurance, go and travel——beiing really careful tho....but GO🤗🤗🤗🤗.

 

love Moijanx

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

Nicky I had Cape for triple neg bc lymphoma in 2016 prior to Eribulin and it def cleared the tumours (para aortic and liver) but I became really ill on it so changed to Erib
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Re: Xeloda / Capecitabine - Your Top Tips, please?

HiNicky, my onc said they used to use vit b6 for pn, but found that it worsens it.....sorry.xx

 

https://cancer.uvahealth.com/images-and-docs/neuropathy.pdf

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

Thanks all for such a warm welcome. Hi Tatyana, I was diagnosed in March 2016 and also had fec-t with partial responce. Followed by a lumpectomy in Sept then lymph nodes removed in Nov. Radiotherapy in Jan 17 and a mastectomy in May, then Gemcarbo in Aug. I am also in the same situations as to whether or not the cape is working but I'm not sure what they will put me on next as I have already been on gemcarbo. I also have lymph nodes that are affected and inoperable. Good luck for your scan results next week. Mine is now confirmed for the 21st. Hi Mulligans, with regards to the SEs I'm not doing too bad. I have sore hands and feet which come and go, I have vitamin B6 for this and am also using lots of hand cream. I have felt sick a couple of times but this has passed. 

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

Thanks all for such a warm welcome. Hi Tatyana, I was diagnosed in March 2016 and also had fec-t with partial responce. Followed by a lumpectomy in Sept then lymph nodes removed in Nov. Radiotherapy in Jan 17 and a mastectomy in May, then Gemcarbo in Aug. I am also in the same situations as to whether or not the cape is working but I'm not sure what they will put me on next as I have already been on gemcarbo. I also have lymph nodes that are affected and inoperable. Good luck for your scan results next week. Mine is now confirmed for the 21st. Hi Mulligans, with regards to the SEs I'm not doing too bad. I have sore hands and feet which come and go, I have vitamin B6 for this and am also using lots of hand cream. I have felt sick a couple of times but this has passed.