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Xeloda / Capecitabine - Your Top Tips, please?

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

Just an addition to the convo about pain with cape. I am on 4300 per day and do have back pain, stomach pain and general all-over aches. I always get woried that the pain is due to spread and meds not working but perhaps not. Wish no one had pain but it is reassuring to know i'm not the only one. x

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

Barton, just an update on the nail situation...ended up back at hospital yesterday as my big toe had got worse..infected and inflamed. Now on penicillin.oh the joys!!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Helen, I'm keeping everything crossed that Cap is still working for you and that this is just a glitch (sorry it's such an awfully painful glitch, though!). As everyone else has said, please don't suffer in silence - could your OH be forceful on your behalf? Gentle hugs, Barton.x

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

Hello Desi, do you mean you are on 1500mg twice daily (150mg would be a miniscule dose)? I'm currently on 1800mg twice daily on my 8th cycle. I did 4000mg per day (total) for the first 7 cycles, but breathlessness was getting unbearable. After an 8 week rest period, I returned to Cap 2 wks ago, and so far the lower dose is causing no problems (se's first time round were slow to build up though - they didn't appear immediately). Please keep in mind that your Onc should listen to you and if you experience problems they can adjust your dose. Hope this helps. Hugs, Barton.x

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

Tracy I'm on 4600 a day,which is quite high.
I do think it's causing all my problems. It did work really well,I'm praying it's held it stable and ct shows this,but with TMs going up and pain I'm very worried it's on the move. Then if it is stable and progresses next scan I've missed the eribulin CDF boat.
Hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Desi, it's calculated on your weight, most doses seem to be somewhere between 1500-2000.
Hope it works well for you and Tinks and anyone about to start the tablets. I was a Capecitabeenie from 2008 right through to 2012.
X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

There was some talk about dosage a while back just wondering what general is? I've been put on 150 x2 xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello cap gang,
Tink,my pains got much worse on cap or denusumab (sp?) but it's a SE of both according to cancer research UK! So I'm not sure which is the culprit .
Hope you are all doing okay, huge hugs,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you for the replies ladies - pain not so bad today, just very sleepy.  Hope it continues to improve and was just a blip.

 

Tink x

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

Oh dear Tink I was only wondering today how you were getting on, I start Cape tmo. Hope it eases soon xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Tink, sorry, no back pain here either. Could it be the stomach cramps that I believe are a possible se being referred to your back somehow? Also, could it be kidney pain? By that I mean are you drinking enough as Cap is very dehydrating? Hope it soon settles down for you. Don't let it slide though - it would be best to get it checked. Hugs, Barton.x

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

hi Tink

i have just finished my 6th cycle of cap, have had terrible stomach cramps since the 3rd cycle, inot in my back though. i take a buscopan for the cramps which really helps,just another horrible side effect as well as bad hands and feet,headaches,fatigue ect!

angelina

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

Hello Ladies,

 

I hope everyone is as well as they can be.

 

I just need a bit of advice.  I have had one cyle of cape and everything was fine until the night before my onc appointment.  I was woken up by severe stomach, lower and upper back pain.  I didn't take any painkillers as I wasn't sure what was causing it.  After being checked over by pharmacist (onc appointment was with pharmacist) and having an ECG at appointment they said it was all okay.

 

Ever since (5 days and have started second cyle of cape)  I have had constant very bad lower back and stomach pain.  The only way to get any relief has been to take codeine (prescribed when I was on IV chemo) 4 times a day, but it makes me feel ill.  Is this usual on cape or should I ring BCN for advice?  I wasn't given any painkillers at my appointment and I think they felt it was just a one off.

 

Tink x

 

 

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

Hello Stresshead, thanks for the information. Sorry to hear about your toes - that sounds sore! I know several people on this thread have had the manky toenail problem, but so far I have managed to avoid that. My fingernails, however, are gradually looking worse and worse as the previous cycles of Cap work their way up. I'm hoping I don't lose them as I can't bear stuff to do with nails (I managed to keep them all when on IV chemo in 2011, but I did get some nasty horizontal ridges on them). My right index fingernail is particularly strange - it's curling up at the edges and is on it's way to being boat-shaped! I have to keep that one really short. I hope you get a good length of time from the Cap. As you say, if it keeps you alive, it's all worth it! Hugs. Barton.x

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

hi Barton, just started my 10th and final |(according to my onc) cycle of cape..nails are now disgusting. toe nails are black and my finger nails have gone thick and all broken away: oe has gone 'bad'. they have broken very low down and are quite sore. Stil, rather have that and be ok. xx

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

Hi all hope we are all doing okay.
Helen hope you are ok you haven't posted for a couple of days xxx
Well had alovely afternoon tea yesterday with the some of the lovely Welsh ladies look forward to the next meet.
Hope everyone has agood weekend I,m off shopping today to pick up a few things ready for when my son comes home on Thursday so excited can't come quick enough.
Take care all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Bev really enjoyed and so lovely to meet you all,lol forward to next time xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Joined kaye today for afternoon tea at a beautiful hotel overlooking the bay. Was lovely to meet up with all the ladies again and meet you kaye. Cant wait till next time! Xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Cap gang! Hope everyone is doing OK? Sorry Cap stopped working for you, Jo, but glad you haven't had any nasty se's on it. Long may it work for you! I have a couple of questions for the Cap gang, if I may? Firstly, since my 8 week break from Cap, my finger nails have been very fine and bendy - paper thin, and they are partly coming away from the nail bed at the top of my nails. I have to keep cutting them right back as it hurts when they bend back! Now I know it will probably be from the Cap, as my nails won't have grown out fully during the 8 week break (and I am hoping that the Cap break will eventually work it's way through and I'll have stronger nails again, at least for a little while), but I was wondering if anyone else has had similar trouble? And now, after typing that, CHEMO BRAIN has struck and I can't remember what my second question was going to be!!! I'll get back to you again later, if I may? Love and hugsvto all, Barton.x

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

hi all 

 

Although  i am no longer part of the cape gang 😞 as it has stopped working! I am now part of the taxol gang! Had first one on wednesday and feel fine after it. Had the cold cap though! WOW its sooo cold its unbelievable! I thought my head was going to explode! after about 15 minutes I think my head was just frozen and i didnt feel anything after that! you have to have it on for 2 1/2 hrs!! when we took it off i had ice on my hair! lets hope it works! good luck to anyone having scans or results. Hope everyone is well.

hugs jo x

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

Morning ladies lovely day here just very cold ,hope we,re all doing ok.Well finally given my 7th lot of Cape as bloods were fine and they finally gave me antibiotics to try and shift this cold and sore throat which I've had for weeks.
Helen hope your pain is better and that you mentioned it to the hospital.xx
Hope everyone else is as well as can be .
I'm going out for afternoon tea with afew ladies from the chat girls group on FB,it will be lovely to meet some of them.
Take care all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,Tink,welcome to cap gang. I've got some of the gel soles. It's relief for a little bit then it's back to burning feet. They are calming down now,as weren't as burning last night ,all to start again on Friday ,lol .when I start cap again.
Huge hugs and hope your SEs are okay for you,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Helen,

 

I have been reading through the beginning of this thread as I have joined the Cape gang (second cylcle starts tomorrow).

 

Sorry you're having problems with burning feet.  I think I read, either on this thread or somewhere else, about buying gel insoles and putting them in the freezer to cool (not too long) and then wearing them inside thin cotton socks.

 

http://www.ebay.co.uk/bhp/womens-gel-insoles

 

Don't know if these would be any good.  Hope you get some relief soon.

 

Tink x

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

Hi,Geordie,I'm going to get one. This is driving me mad. Honestly hubby doesn't have to scape car in morning I'll just put feet on window xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you ladies. I have a fan Belinda,but poor hubby is complaining I have no heating on in bedroom and windows wide open,he wakes up shivering and I'm so burning hot. Hoping they will settle as it's three days into week off.
Huge hot feet hugs,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

how about a cold hot water bottle would that help at all xx

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

Helen, just read your post on bones thread and find you aren't feeling better at all - so sorry to read that! Please be careful and take it very easy. Barton.x

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

Hello Helen, I'm afraid I don't have an answer for you, but can totally sympathise - I know exactly how that feels. I'm afraid all I do is put them out from under the covers about half a million times each night. Hope you are feeling a bit better now. Hugs to all the Cap gang. Barton.x

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

I used to get the same Helen, how about a fan at the bottom of bed, I used to sleep with feet on top of bed clothes. X
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,cap gang,any advice how to cool feet at night. As soon as I get into bed at night they are burning hot ,feel like they're on fire. I wake up a few times in night as so hot and have to put cream on them I 've put soooo much moisturiser on,stuck them out of bed,put cold wet face cloth on them. They are never like this during day only at night,very odd and uncomfortable .
Hope everyone is coping with SEs,huge hugs,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

A week or so ago I asked for recommendations for creams for plantar palmar. I have been using Udderly and topped it with Vaseline. But I then remembered Waitrose Baby Bottom Butter which is made of olive oil, vanilla and camomile and costs only a little more than Vaseline. I've had good results from this and managed to get through my 4th cycle of current treatment without blisters. So, if you shop in Waitrose do try it - cheap, smells nice and has no nasties in it!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Pam, so pleased to hear your news.!!

Jo, dont worry about crying..my counselor is used to me bawling every time.i once said to her.." how do you cope with everyones woes and crying all the time" she replied..." at least at the end of the day i can walk away from it". How right she is...i just wish we all could.

xx

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

Hello Cap gang! Well, I'm back from the chemo unit with my lastest lot of pills (Cycle 8), after my 9 week break. I have a lower dose this time (3600mg daily instead of 4000mg), so hoping the se's will be slightly less. Hugs to all the Cap gang, and I'm thinking of all who have had bad news recently. Barton.x

 

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

Great news Pam, it gives me inspiration when I hear stories like yours especially at the moment because I am going on new chemo Vinorelbine nexr week following progression. If this does not work xeloda is likely tk be next to try.xx

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

Hi all
Pam that's great news. I bumped up the inspirational stories thread the other day but there seems to be a lack of response. As bev says it may be worth putting your story on there to inspire others!

Helen - thanks for the hugs x

Having rubbish day again. It really is a blow when there's progression! Hope everyone is as well as they can be!
Hugs jo


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

Hi,Kaye,I know what you mean. When my neuts are low I panic because I've missed a week of chemo !God this dammed disease so messes with you head. It will be your cold that put them down as your using the neuts to fight cold. Mine go down when I have an infection.
It still amazes me how our bodies cope with being filled with poison every day and cancer.
Hope you feel better soon,cold are bad enough when we are fit,m
Huge hugs,Helen xxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Pam...have you put your post on the Inspiring Stories thread? I know there are quite a few ladies who would be thrilled to read it 😀 xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Neuts I meant to say xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

That's great news Pam it's always good to hear success stories,it is also working for me but couldn't start my 7th cycle as nuts are low .
Helen I know I shouldn't worry but can't help it sometimes this is what this crappy disease does to us.I am full of cold so this could be why they are low hope it clears by next Wednesday ,never thought I'd be looking forward to Chemo .hope everyone is doing ok.
Huge hugs to all
Kaye xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

That's great news Pam!! I'm so cheered by success stories on Cape, hoping it works for me for 3 years as well. Finding I'm getting more anxious the longer I'm on it, thinking the next scan will show progression....smacked wrists for being negative!! On cat lady's naughty step as I type!! Hugs to everyone not feeling good today xxxxxxooooxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh,pam,that's fantastic news xxxxx just what I needed to here today,as really struggling at moment.
Long,long,long,may you continue to keep you stable,massive hugs,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Helo, Pam - what wonderful news - so reassuring! That must be a huge weight off your mind. My fingers are firmly crossed for you, too. Long may it continue. Hugs, Barton.x

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

Hi I thought i would post my good news to share with those ladies suffering with S/es at the moment and to say with a bit of luck it is worth it!! so repeat spinal MRI and CT scan last week.(my first CT scan for 3 years). the CT scan shows  all clear....the MRI no progression in mets in multiple vertebra with collapsed T4. Ive been very fortunate to have 3 years of no progression on capecitabine and 4 years since secondary diagnosis. My fingers are now very tightly crossed that this may continue!!!

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

Hi,Kaye,I've had to put mine back because of low neuts. I usually happens when I have an infection. Try not to worry they'll be okay in a few days xxxxxx hugs,Helen xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all hope we,re all doing ok haven't posted for a couple of days as full of cold which I can't seem to shift.They wouldn't give me my Cape yesterday because my neutrophils are low hope they pick up by next week as I worry when I'm off it too long .hope you all have a good day .
Take care all
Kaye xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi,jo,how are you doing today? I often cry through sessions. I did when I got progression to liver and lungs. So your not alone. This disease is @@@@ and so cruel.
Sending you massive hugs,Helen xxxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi bev
Thank you for your advise and kind words. What a journey this is ! I hope that your next treatment works too. I went to see my counsellor today and cried all the way through the session! Poor woman having to listen to that! Anyway I suppose the only plus point is it hasn't spread anywhere else at this point. I'll give the cold cap a go and see what it's like.
Much love jo x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Jo...so sorry youre feeling so down but its natural...crying is good. We all need a release. I was the same this time last week when onc told me i now had spread to my other lung. Its soul destroying truly
especially when you hear of other ladies responding well to treatment. But i was assured by the chemo sister on the ward that they would find a treatment that worked for me and im sure that'll be the case for you too....just hang in there like me love.
I had the coldcap with docetaxol and i did lose about 60% of my hair ....didnt go patchy just very thin like baby hair. But that was after the 1st dose. I didnt lose any after the following 3 doses. And it actually started growing back during that time.
I had the Paxman scalp cooling system and it was quite comfortable to wear...so give it a go. Some ladies dont lose any hair with it.
Love and lots of luck....bev xxxxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi cw17 thanks fir your support. I've cried buckets today. Just can't take it all in. Start taxol next week and having cold cap. Has anyone used the cold cap? What is it like and does it actually work? Any tips appreciated !
Love jo x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi sjamitch, please dont beat yourself up for feeling as you do. I too am a 'cup half empty' person and i find it really difficult. We all feel like crumbling, especially at 'results' time but only we know how it really feels.  was so sorry to hear your news but i'm sure the next thing will be the one that works for you. Lots of hugs.x