Xeloda / Capecitabine - Your Top Tips, please?

[Mitch23]

Hi Barton

Thank you for your kind words. You ladies do seem to be strong! I feel as if I'm crumbling and I need to pull myself together for my family.
Helen - thanks for the hugs! Gladly received. How are you feeling ? I've just started anti-biotics for a virus. There is some nasty stuff flying around at the mo. It hits hard when your immunity is low.
Hope you feel better soon
Jo xx

[2catlady]

Barton xxxxx

[Barton]

Hello again, Jo, I can understand it being a hard day for you! Please don't feel you have to apologise for being upset - I'm sure all of us here can say that we have, at one time or another, had a "rant"! I have to admit that I too am a pessimist! (sorry for all ths exclamation marks). It was a good thing that your Onc said - please try to take it in. Hugs. Barton.x. Ps: Helen - glad to hear you are feeling a little better, although you are a naughty girl for not ringing the hospital - there is such a thing as being too "stiff upper lip" about things! However I won't make you sit on the naughty step (that would be too mean for the state you have been in)!   Hugs to both, and all the rest of the Cap gang.

[2catlady]

Oh,jo ,sorry results were not what you hoped for. But your onc sounds very positive which is a great help.hoping next chem will work wonders for you.
Massive hugs,we are all here for you,Helen xxxxx

[Mitch23]

hi barton

thanks for your reply. Its been a tough day. start taxol next week. just gotta keep going! i hope your scan is good.  its interesting that my onc said "its not anywhere as bad as what you think it is' he was very positive. unfortunately im a cup half empty kinda girl and find it difficult to see anything positive at all!

Sorry about the rant!  

Best wishes to all 

jo xxx

[Barton]

Hello, Jo, so sorry to hear of your results!  I can only imagine how you feel at the moment, but I wish you all the best.  I hope the Taxol works for you, as I know it has worked for lots of ladies on this site.  Please read the relevant threads, and all the positive posts -  there are lots.  By the time I start my next lot of tablets on Thursday, I will have had an 8 week break.  They have booked a CT Scan for me on 11th Feb, and I am already nervous about what it will show - hoping the little uggers haven't been having a party while I have been off the Cap!  Love and hugs, Barton.x

[Mitch23]

Omg. They've grown. Have to move onto taxol. Anybody had good results with this? Am panicking big style.
Jo x

[2catlady]

Oh,jo,we all know how you are feeling. It's an awful time waiting or getting results and yes being scared is all part of this awful journey we are all on .I haven't any tips to help sorry 😞
We are all here for you xxxxx
Huge hugs,Helen xxxxxxx

[Mitch23]

Hi all,
Haven't posted for a bit but have been reading your posts!
Am off to the marsden tomorrow for scan results - YIKES!!!! - am feeling sick at the thought of it! Does anyone have any tips on surviving their scan result appt? Sometimes I feel like I'm going to collapse I'm soooo scared! It just seems to get harder every time. Anyway hope everyone is well
Love jo x

[Barton]

Hello Cw, I can't understand why your Onc says you can't stay on Cap indefinitely - my Onc has said I can and I believe one of our other dear ladies on here was on it for 9 years (someone please correct me if I'm wrong!). Do you have other health concerns (not asking for details - just wondering) that may be worrying your Onc? I can completely understand why you are scared (I almost went into panic mode when the first suggestion he made was that I stay off Cap with just occasional scans as backup until things changed). Hoping he changes his mind for you! Perhaps he is expecting you to be NED at the end of the 10 cycles? Hoping svan results go well for you. Hugs, Barton.x

[stresshead]

Helen, so sorry tio hear you are feeling unwell again. I'm sur its a bug or virus but like the others have said, please get yourself checked. I was feeling really rough a few weeks ago..persistent cough, breathlessness, aches and pains. I went to my GP who prescribed antibiotocs but when the chemo dept found out they went mad that i hadnt rang them sraight away.

Barton, so pleased to hear you were given the choice to stay on cap. My Onc is adamant i have to drop them after 10 cycles (on 9th at moment) and i'm relly scared. havent had any interim scans but he says they are working when i have my appointment with him every 3 weeks. Hopefully will be reviewd after my scans at end of treatment.

[Porkie]

Helen - so sorry that you are feeling poorly again. I do hope you are feeling a little better now but if not I echo what the other ladies have said that if I were feeling as unwell I would call my chemo unit tonight - so they can check you over. I have called in the past and the hospital has always been very helpful and said I did the right thing in calling.xx

[Barton]

Thanks Bev. I'm wishing Cap and the other chemo had worked for you but I'm sure that the next one will. Good luck. Barton.x

[Bevlaar]

Barton...so pleased about the Cap. Must be lovely to be told you can have a break but nice to have the choice too of staying on if u want. xxxx

[Bevlaar]

Sorry youre not well again helen..youre going through a heck of a time of it lately with your back. Hope you get some relief soon. Dont worry about moaning lovely lady...feel the same myself this week.
breathlessness so bad last 2 days i need to carry my inhaler up the stairs with me to inhale when i get to the top! Cant breathe otherwise. You take care xxxx

[Barton]

Hello Cap gang - just got home from the hospital after Onc appointment. Have finished 7 week rest period from Cap. Saw the Registrar this time. Wad offered two choices - stay off Cap and be regularly monitored and then go back on when necessary, or go back on Cap. I opted to go back on Cap (the thought of doing nothing frankly terrifies me!), but at a lower dose of 3600mg instead of the 4000mg I was on for 7 cycles. It will mean taking more pills to make up the dose though because they only come in 500 & 150mg I believe. I couldn't start them today because, apparently, they have to order them in, so I get an extra week off! Yay! I will have another CT scan soon though (in the next 2 or 3 wks), presumably to see if the break has done any damage. Hugs to all the Cap gang and a special gentle one for Helen. Barton.x

[bertie1]

Hi Helen sorry you're feeling poorly again,it might be agood idea to give your hospital a ring if yor pain doesn't ease and you still feel unwell.
Huge hugs
Kaye xx

[Barton]

Hello Helen, sorry to hear you have been poorly again! As the others have said, you need to be checked out. The literature I wad given when starting Cap (and a few yrs ago when I had IV chemo) was that you should ring the hospital if you felt unwell even if you didn't have a temperature. I think shivering etc counts as feeling unwell! Please ring them! Hope you feel better soon and lose all that nasty pain! Hugs. Barton.x

[2catlady]

Thank you ladies xxxx I'll see how I am tomorrow,if still dodgy I'll give them a ring. It could be my ear virus that I went to see GP about as ears are still very painful.
Huge hugs,Helen xxxxxxx

[geordiex]

Helen you need to go to the ward they'll check you out I have been a few times and they're great give them a call they tell you to if your feeling unwell x

[Stillhere]

Helen, just to say that I hope you feel a bit better today. Your back sounds very painful but it could just be a lurgy if you were shivering. Cap does make you breathless as well. Lots of hugs and good wishes xxxx

[Desi-2]

So sorry your feeling like this Helen hopefully it won't last and its some sort of virus I know when I'm generally unwell my back pain is always a lot worse. It wasn't long since your scans if I remember rightly so hopefully nothing could have changed so quickly. Hope you feel better soon xxxx

[2catlady]

Hi,cap gang,how are we all doing?
my back has gone again and feel absolute awful. Had terrible breathlessness yesterday and got so upset as couldn't breath and had total meltdown.By tea time I had uncontrollable shivering ,teeth chattering the works,feeling dreadful ,felt really sick. But no temperature .went to bed back went into spasms and was in dreadful pain from back. Feeling a bit rough today but can hobble around at least and meds are keeping pain manageable .
Sorry ladies just feel like a moaning Minnie at moment as very scared that things are deteriorating quickly .
Huge hugs,Helen xxxx

[bertie1]

Hi Cap gang hope we,re all doing ok it's been abit quiet on here the last couple of days.
Kaye xxx

[bertie1]

Hi all hope we,re all ok this cold day best stay in the house today where it's nice and warm.
Teej thanks fingers crossed that it keeps working dreading having to go on Iv chemo,hope this one works well for you .xx
Cw17 thanks ,it's always worrying when you get your results but I was very pleased hope it keeps working for a long time xx
Kaye xxx

[Teej]

I started Cape with Avastin on Thursday and very grateful to find all the excellent tips on this thread!   I was dreading going back to chemo (I've been on a trial drug which failed) but no side effects so far.

Thrilled to see your excellent results Kaye!  This is my third chemo, who knows, this one might actually do something for me - third time lucky?! 

[stresshead]

Bertie1...so pleased for you. Lets hope we all get some of the good news you've had!! x

[Barton]

Thanks, Kaye.  Yes, thanks, I'm doing well at the moment, although, I have to admit, dreading the return to the pills next Thursday - only 1 more week off now!  Still, I'm hoping the tiredness & breathlessness won't be nearly so bad on a lower dose as long as my Onc agrees.  Hugs to you and all the Cap gang.  Barton.x

[bertie1]

Thanks Barton I was really pleased long may it continue,hope you,re doing ok.
Love and hugs xx

[Barton]

Hello, Kaye. Sorry, only just seen your last post. What excellent news! I bet you are over the moon! Such a brilliant result after only 5 cycles. Long may it continue for you (and with few/manageable side effects)! Congratulations. Love and hugs, Barton.x

[roxy12]

Morning everyone, it looks like I have answered an old post. Must be my chemo brain!

Anyway I hope it helps someone. Hope everyone who is getting results this week have good news and good luck Belinda on starting your chemo.

Love Sheila. Xx

[roxy12]

Hi Ginette,

I just wanted to tell you that I was diagnosed with lung mets 3 years ago and they are still giving me no symptoms. Like you, I was very worried but I don't think about them now. I have since developed bone mets and liver mets. Liver over twelve months ago and thank goodness these seem to be under control. I am trying to just get on with life although it isn't easy. There are loads of treatments available.some may work some may not but there is always something else to try.

Good luck with your treatment and keep on the forum. You will get lots of support.

Take care, love Sheila. Xx

[bertie1]

Good news today after 5 cycles of Cape ct scans show NED in chest lymph node,mediastinal nodes resolved ,tumours in liver significantly reduced and the largest they could see on scan had reduced from 2.2 to 1.2cm since last scan in July,tumour on spine resolved and bone is healing ,couldn't be happier.Hope everyone is ok and good luck to those of you who have appts,scans and results this week.
Take care all
Kaye xxx

[Elily]

Good to read the reminders about drinking loads. At work I always have a glass of water on my desk (and handcream) and I carry a water bottle in my bag ... But when I am at home I forget (must be the wine)

[2catlady]

Lol,oh Belinda you are so funny. Yes,a film would be good lol. I love carry on capecitabine lol. Oh ,matron .....
Xxxxx

[belinda]

Helen, I know, crazy what we all get used to isn't it? One day we should all get together and write a book, a film, Carry On Capecitabine....sounds a good title.
X

[belinda]

Gold bars in the post to you Barton, melted down there should be quite a few ear-rings. 🙂
Keep taking the pills everyone. I was on them from 2008 to 2012, I hope they work well for all. X

[2catlady]

Thanks Barton,I'll try yo drink more,mind I'm always thirsty ,my mouth is continually dry and drinks don't seem to quench thirst . On another lovely SE lol
Xxxxx

[2catlady]

Oh,that's an interesting article Belinda thanks. As if we don't have enough problems with false boobs and drugs ,now fingerprints lol. I'll be sent to guantalomo bay at this rate lol.
Thanks for gold I'll buy a fleet of planes and we can all go for a bit of Mickey magic xxxxxx

[Barton]

Ooh, gold bars gratefully accepted, Belinda! Would rather spend on some nice jewellery, though (no real use for a private jet unfortunately!). Hugs again, and I'll hide you if they come looking for you. Barton.x. Sorry, just reread your post - you mean you are sending the jet to Helen, to avoid airport security I presume! I eould still hide you, Belinda. Barton.x

[belinda]

Here's the story, BBC News link,
http://news.bbc.co.uk/1/hi/health/8064332.stm
Perhaps a letter as a precautionary for anyone concerned about their prints, it could save some time and no need to declare unless you have a fingerprint fail?
X

[belinda]

Don't worry Helen, I think it's becoming a well known side effect which has come up as a security issue. Bit like hip replacements and detectors. Sending you some nice gold bars in the post, winks to Barton, you can buy a private jet with them if you like. 😉

[2catlady]

Oh Belinda,I've just looked at mine and they are very faint! How odd,they'll not let me back in USA if my fingerprints go!! Yikes!

Kaye,great news xxxxxxxx

[Barton]

Belinda - a good time to rob a bank then if you don't have fingerprints! Mine are just beginning to reappear after 5 weeks off! Hugs, Barton.x

[Barton]

Yes, Helen all my chemo nurses at different times, and my Onc, have said to drink lots - Cap is very dehydrating, which is a large part of the problem with the skin on our feet. So drink that water till it comes out of your ears (sorry- might make yours worse!). Hugs. Barton.x

[Barton]

Oh Kaye, that's wonderful news! And your markers are still dropping - wow! That is very reassuring for me to know from someone with first-hand experience that a lower dose is working just as well.. Thanks very much for posting. Hugs. Barton.x

[belinda]

You can eventually "lose" your fingerprints on Cap, mine are very faint to non existent.
X

[Bevlaar]

I was never told that helen when i was on it although its always a good idea while on any chemo to avoid dehydration. ....and to help flush it through your system as quickly as possible! Xxx

[2catlady]

Thank you ladies,you are all stars . Do you have to drink more while on cap? I haven't been told that !
It's so strange that hospital all don't sing from same book when it comes to advice,care or just treatments.
Huge hugs to all the cappers and our ex capper bev xxxxx Helen

[bertie1]

Hi Barton I have had 3 weeks off Cape an extra week for a really bad cold and an extra week while on holidays as Onc didn't want me to be ill while away,I had a Ct scan last Monday and get the results on Wednesday everything crossed for that.TMs after 5th cycle had reduced fom 194 to 18 so hope this is a good sign,was also on reduced dose started on 3500 and had it reduced twice because my hands and feet were so bad,am now on 2500 per day since the third dose and my TMS were still dropping .
Hope all you ladies are ok
Kaye xxx