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Xeloda / Capecitabine - Your Top Tips, please?

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

Had blood transfusion today. I know it's a bit soon to count chickens but I did walk upstairs without nearly collapsing this evening!

Back on cape on Saturday. Hugs to all cape crusaders. xxxx

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

Hi Carolyn, sending you a big hug. I do hope you start feeling better soon.

Ramade, same to you as well.

Poor you, both of you. Cape seems such an 'easy' chemo but I don't think there's anything easy about chemo full stop. Hope everyone feels better and that the sun coming out and a bit of warmth will do us all good.

Nicky xx

 

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

Hi Carolyn 

 

Sorry to hear you are having such a rough time at the moment. Can't be nice feeling dizzy and confined to bed. Hope bloods are good and you are able to start pills.

 

Take care.

Linda 

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

I'm still in bed nearly a week now. .have no strength in legs,  dizzyness and blurred eyes etc ...I'm. Happy got DVD tv kindle and coffee maker and feel this is the best thing. My chemo pills stop again tomorrow for a week too. 

How is everyone ? Hoping blood test is ok next week for cycle 10 of peachy pills. 

Ramade ...sorry about the hospital admissions.  I try to eat basic plain food to avoid the explosions! ! 

 

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

Hi Ramade, hope things have improved for you, sounded really scary.

Carolyn have you seen a doc yet? Are things getting any better?

Lots of hugs to both

Bon

 

What a beautiful day. Opened bedroom window to discover farmer spreading slurry 3 fields away.Smiley Sad

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

Ramade, It's scary! Back at Thanksgiving when I got sick I knew I was dehydrated, when I passed out. It scared me, so I went to the cancer center and got fluids. You can't mess with it. I hope you escape and get home to your own bed. Take it easy for a few days and try to get more liquids in you or you will end up going back. Take care. FF

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

Oh ramade 

Glad to hear from you ..I have had problems on this thread. .so many of my replies went into cyber space ! Sorry to hear u are in jail with the trots ....

I was taken off heart pills a week ago as gp doc didn't think I needed them as my heart rate was normal.  Doc said no withdrawal signs by stopping them. Ha ha. .spent a week in bed ..wobbly,  no balance etc. .I had this 7 months ago when I started them. My Hubby has to lead me toilet as I had a couple of falls . Think today has been my best one in a week. Also glottal blurry vision. Oh the joys of it all. Not eating much or peeing much either ! 

Keep in touch as we are a mirror image at the moment with mets and the brain thingy. 

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

Dear cape crusaders, i have not posted this week as rushed to hospital Saturday during the night, very bad reaction with diarrhoea not stopping, pains like labour pains and totally dehydrated(couldn't even speak), finally recovering and go home tomorrow. I expect the dose to be reduced considerably. so, if you feel you are getting dehydrated,get help, i left it too long. Big mistake.

hugs to all

ramade

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

I agree Nicky that we must copy our messages, at least for now. There are gremlins in the threads despite the best efforts of the moderators! But actually good to know that I am not the only one to have trouble. I often think I'm plain stupid! My email saves everything I do, just in case, and calls them drafts, which would be helpful here.

 

I do feel sympathy for your mum. All of you. I lost my parents just a few years ago and I miss them now more than ever. But strangely time helps in that I am getting  used to the emptiness of missing them. It never goes away, but it does become a part of you. Sounds silly. I had to accept that I would always miss them. But grandchildren are a joy! My little Anna.......7........is a whirlwind!

 

All the best to capers! I do my daily homework ploughing through all the advice and good sense on this thread. Gives me courage. I need it!

 

mo

 

PS this reply says it has been autosaved. Not noticed that before. I might check after sending.

 

PPS just posted and it says I must correct highlighted errors, but there aren't any. Trying again...........

 

 

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

Hi mo

I agree the new forum format seems to lose posts quite regularly and saving them beforehand seems the only way to make sure what we’ve spend time writing isn’t lost in the ether!  I replied to a separate post the other day, in quite a lot of detail only for it to be lost. Funnily enough I went to reply to the original post and thought it strange that I seemed to be logged in as I usually log out as soon as I have written something. Anyway it allowed me to post a reply and then confirm I was not a robot and then lost the post as I wasn’t logged in after all. Grrrrrrr.

Anyway thank you as well for your kind words. We are all doing well as a family although I think my Mum is now feeling my Dads death, and absence, more acutely now than when he died in October. I’m sure it will hit us all in different ways and I’m not sure i have accepted it yet. However life, for all of us, does go on and my young grandson is a joy and certainly helps whether he knows it or not!

Nicky xx

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

nicky.........just to say that i wrote a reply to your kind post earlier this morning but it seems to have disappeared altogether, despite me confirming that I was not a robot! No energy to rewrite, but thanks so much for your message. I do hope you and your family are still coping together.

 

quickly re epirubicin. i also wondered if he had said eribulin..........epirubicin so obscure. But my friend's notes plus a check with onc sec confirms that he did offer epi. strange. But for me Mermaid's good advice was that cape is well supported here on this active thread. I could be a cape 'crusader' too, and would benefit from all the shared experience here. I have read through many of the posts which go back quite a long way. Who knows? I may eventually have some advice to share of my own. So I will ignore epirubicin.

 

Nicky, well done for your 11 years on the BCC website! You are an anchor here, keeping an eye on us! I said in my lost message that I will be posting soon on the ablation thread to explain what happened to me, but Mermaid should know that ablation is an excellent option. 3 of my 4 tumours are gone. The last one is small and indeterminate. Because of my new situation involving unexpectedly my left kidney it will not be done as planned. Cape for me now. But for info and sharing I will explain in more detail on the ablation thread. I'm still a bit up and down.

 

So sorry my earlier rambling lost into the ether. I will save first before clicking on 'post' this time, just in case. The new website appearance has arrived with some problems as I know other posts have been lost. Here goes..........

 

mo

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

Hi mo

It's good to see you posting but sorry to hear that the ablation knocked you for 6.  When you have the energy please do add to the Liver ablation thread, if you can find it!!! The new format is rather annoying (I suppose until we get used to it) so threads have been combined (such as the one of 'Inspiring Stories') which has pushed a lot of threads much further down the pages.

As to chemo, I've had FEC but not heard of 'E' on its own, or maybe once in the 11 years I've been on here.  As Debs has suggested did your onc mean Eribulin?  As I've had Capcitabine and Eribulin I can compare the side effects and effectiveness if you want. At the moment a lot of Cape Crusaders are suffering with side effects which is such a shame as overall it is a very well tolerated chemo.  I think it is a case of getting the right dose and hoping that even then you don't suffer too much - easier said than done in some cases.

Good luck whatever the next step is.

Nicky xx

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

Thank you Mo

Ive looked on the American site but epirubicin alone evades me so I would probably go for the cape. There’s a good support group here for the Cape Crusaders plus it seems to work very well for liver and can be taken for as long as it’s working. The side effects seem to vary from person to person but many have also said on the American site that it’s the easiest chemo they have been on so that’s encouraging. Just a thought but you don’t think he made an error and meant to say “ Eribulin” instead?

Take care Mo and will check out your post on the other thread when you feel up to it

xxx

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

Good to hear from you too debs! I will fill in a bit more about my recent experiences on the ablation thread as it isn’t really relevant here. And we ‘met’ on the ablation threads didn’t we? I haven’t posted there for ages..........have just been so low. But feeling better suddenly and so will write something there soon. It all became complicated. One thing on top of the other. For me it is looking like cape next. Not looking forward to it but the ladies here seem to cope somehow. As usual the exchange and sharing of experiences is so valuable so this will be my thread to visit in future. 

 

I might throw out a general question here........my onc has offered me a choice in fact between cape and epirubicin. I can’t find much about epirubicin taken on its own...........I only see it as the E in FEC, in combination. Has anyone here tried epirubicin on its own? I think I will go for cape simply because it is obviously a common choice.......much more known about it. I am small........42 kgms at the moment........and can’t be hit too hard. I think cape is weight dependent so I hope I can manage.

 

debs, I will post on the ablation thread soon and tell you about my experience there. You should see it bumped up in the list. But you should certainly ask about RFA as an option if you are stable otherwise.  Lovely to hear from you, and best wishes to everyone usually on this thread, coping so well with their treatment.

 

mo     xx

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

So pleased to hear from you Mo, was getting concerned. 

I was turned down for cyberknife to liver as I already have cancer in my bones. I’ve just had a CT scan and see Oncologist next Wednesday. I am going to ask about RFA so will be pleased to hear more about your experience when yiu feel up to it. 

Take care

Debs x

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

My account has been used by someone else so I'm hoping the moderators have changed my password so hoping this is now ok. 

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

Carolyn...........I seem to have cancelled my previous message rather than posting it, so here goes again! I have visited today because I might be changing to cape myself. I see you are posting here these days so thought I’d say I have sent you a pm. I have been ultra tired since the liver ablation so have not had the energy to even visit bcc let alone leave messages. But feeling suddenly much better, although have to recover the lost 5 kgms before treatment change. Not easy. You seem to be coping with cape quite well............better than e/e.........a disaster. Anyway I’m just waving my little flag to say hello again as I slowly emerge. 

 

Thanks to to everyone posting here. All the experience and advice is so useful, although I haven’t started yet. Good wishes to you all,

 

mo.       x

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

Hi Lynne, 

Just wanted to say have a good  holiday in Spain. We went to Valencia last year and i had a week off Cape to enjoy red wine and tapas. I am sure you will too. The extra week off did not affect my TMs at all.

Happy hols😊

Have a good week fellow Capers

 

George🤗

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

Hi everyone 

hope that you are all feeling as well as you can.  Like many others I also seem to have more effects during the week off, but not as much as some.  I did not start my 7th cycle because we are going to Spain on Tuesday and he didn’t want me to take the Cape whilst away.  Apparently my bloods are very borderline and he is worried about infections....the immune system is low whilst on the pills - as we all know.  He said that they would improve without the pills so will be okay in Spain... I just hope that my markers don’t rise too much.  He was happy for me to go without the pills.  I am really looking forward to a break but just a little anxious as well.

Does anyone else get shaky, I feel shaky inside but am not actually shaking - it’s a bit like being really hungry....even though I aren’t and it can be just after I’ve eaten.  I mentioned it some time ago but the Onc didn’t seem interested, he said that was a side effect he’d never heard of before so probably not due to the meds......although he did mention in my GP letter that I mentioned being tremulous at times.

 

Carolyn did you enjoy your day in bed. Hope you’re feeling better on your reduced dose.

Ramade, George and Graceland girl hope the SEs are subsiding a bit now that you’re back on the pills.

 

hugs to everyone 

 

Lynne

x

 

 

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

Hi Carolyn, 

I don't blame you for having a day in bed. Sometimes it can feel like a treat ( hope that doesn't sound too daft). I read the paper then snuggle down under my duvet, allowing hubbie to wait on me. I have been dosing myself up on paracetemol and ibrufen today. Ho hum. Hope things pick up for you tomorrow, Carolyn. 

Ramade, hope your anti sickness treatment works. Gosh, sounds like you have had heavy snow. I am in the Midlands and, although it is cold, no snow as yet.

Have a good weekend all and hope SEs ease up

 

George 🤗

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

Thanks ladies for your replies ....it's horrible feeling like this. I'm in Devon Ramade but it's easy at moment ..Huby did a quick trip to aldi for  sup plies early so we are ok with things. ..but not eaten much the last 2 days. ..I find milk and cuppa soup my best friend .

Decided to have a day in bed ....

Xxx💟💟💟💟

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

Carolyn, George and all, no doubt that the week off is horrendous, not sleeping, feel sick all the time, diarrhoae(can't spell this word, too hard), then constipation. i have heard on the radio this morning that boiled water with some sprigs of rosemary in is good for that sicky feeling. i am going to try today. Snowed in today in Somerset and still snowing hard, good job hubby did grocery shopping yesterday.

love to all

Ramade xx

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

Morning Carolyn,

 

I can definitely sympathise as i finished my week off yesterday and was actually looking forward to starting Cape again today. Recently, and I don't know why, i experience back pain at the end of my week off which stops me sleeping. Not feeling great today, but have started Cape anyway.

Hope, after your rest, you feel a little better. Make sure you have a good rest today. I try to incorporate 'rest days' into my schedule.

Look after yourself

 

George 

 

 

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

Oh George I have felt horrible on week off cape this time. .wobbly,  sicky, bone pain ..hoping Sunday back on will improve.  Guess the body rebels when chemo just stops after 2 weeks. 

Haven't slept at all during night so hoping to go back for nap later ....

 

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

Hi Carolyn

 

At least with lower dose your SEs should be milder. My onc says the same as yours that Cape is effective on a reduced dose which was good to hear as I struggled when i was on the full dose.

Good luck with your scan. I have one too within the next couple of weeks to see how things are going, always an anxious time. 

Hope you have some treats planned for yourself.

 

George 🤗

 

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

Hello George
Just seen oncologist ..platelettes still low so down to 800 x 2 peachy pills again on Sunday when I restart ! But she assures me they should still be working
Got scan at end of month so all will be revealed. Blood pressure low so she thinks that's what's causing the balance problems not the brain mets ..hope so as that's sortable! Amy way enjoy holidays and treats ..quality of life with this damn disease.
💟💟💟💟
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning all,
just had a quick catch up regarding your news. Good to hear about holiday plans; it is great to have something to look forward to. We are hoping to go to Spain/Portugal in March, all being well.
I too am on my week off and experience the same SEs as the rest of you: dodgy tummy and sore hands/feet. Also, get joint pain which disappears when I restart chemo.
Off to movies twice this week. Saw Mary Queen of Scots last week, which was really interesting, going to see Stan and Ollie this evening and Green Book Thursday. Nice treat during these cold, dark nights.
At the moment, I am at hospital waiting to see onc. No results for me today as i have requested to get TMs every 6 weeks instead of 3.
Hope all well with you all. Keep planning those holidays and treats.😊

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

Hello and thanks for your replies. I too am worse on my week off. I finished on Friday and since then have felt sick and got stomach ache and diarrhea has started and I don't want to do anything. My TMs go up and down each cycle. But as you all say, if the pills are working, it's a price worth paying.

Hope you all have a good week and Lynne enjoy Spain !

Love GG XXXXX

 

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

Hi Graceland girl.....I am pretty much the same with bloating and feeling full, but am hungry again.  I mentioned it to my Onc. and he said that it’s not unusual with my cancer...ie. peritoneum.  He advised me to eat little and often, which I try to do now.  I eat smaller meals with a snack in between.  One problem is that when I snack I tend to go for ‘treats’ maybe biscuits or crisps or cake.  Trying to have

healthier snacks like banana or fruit.

And Carolyn I am always being told how thin I look, but I am within the healthy weight range.......

I lost a lot of weight during IV chemo last year but have gradually put some back on

 

agree with everyone else as well regarding feeling unwell in week off.  Diarrhoea and nausea etc.

 

I was due to start cycle 7 tomorrow but mentioned to Onc. that we were hoping to go on holiday next week so he insisted I have a cycle break.  Hope the TMs don’t go up too much, but really looking forward to a week in Spain.

,

 

 

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

Just a small irritation .....since I've been on cape ...I can varnish my nails before bedtime. ..next morning polish has virtually vanished! First time in 50 years I have not had polished nails ..is it just me being weird ?
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes exactly how I feel. Nothing tastes nice either. .just eating basic stuff ...used to be a real foody now it's just to survive ! I'm on my week off chemo now so hope appetite gets better ......lost weight again too. Always battled with weight but now I hate being just 9 stone ..too thin for me! !
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi All, I wonder if anyone else has trouble after eating. Even if I have just a small meal now, I feel so full and bloated and need to loosen my clothes. But at the same time, I feel empty inside and want to eat.

Does this sound familiar to anybody ?

 

Love GG

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

Hi Bon, yep doctors should read this site for sure. Variety as you say is the spice. i bought laxido over counter very effective without endangering or clashing with our meds.

Now this is interesting.... i have had HR pos for years, had biopsy done and i'm no longer HR pos, i am not HER either so i guess this means i have become triple negative, i will discuss this next time, we were stunned at the consultation, call me thick but i didn't think this could happen.

Anyone else??

love and hugs

Ramade xx

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

Hi Ramade, I've only done one cycle but almost immediately became a bit constipated. Not too bad as I tended towards diarrhorea before. Docs should read this thread. It is apparently possible with cape to have an explosion in the morning and constipation in the afternoon. They say variety is the spice of life. I've been prescribed laxido to offset the constipating effects of codeine. Seems to work.

Let's talk about the weather

love to all Bon xxx

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

Hi carolyn

i hope your platelets and blood spots recover before next round. Thanks for confirmation it’s not just me who spends half the day in the loo! Are you ok when on the peachy pills as for me it’s everyday on or off pills! I too eat bland food, soup, oven chips and baked potatoes, I don’t eat dairy but my OH has found lovely puddings for me made from coconut milk. They are a treat all from Sainsbury’s!

Scan booked for Monday 7.20 in the evening, I’m usually heading for bed soon after that so will be excited for a trip out in the dark.

results the 6th Feb. Hoping for stabilisation or improvement in liver as new oncologist described it as extensive liver lesions of all sizes. 

Trying to stay positive.

Good luck to all on cape. Xx

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

I have had a few explosions too with cape on the week off. Try to keep to plain foods ..I live on cuppa soup, rice pudding and ice-cream! !! It's about 2 hours after each meal I agree ..then it's a mad dash to the loo . It's a good treatment though so worth trying to keep going with it. I'm hoping my platelettes recover after Sunday when I finish the peachy pills for a week and go clinic Wednesday for blood results. The blood spots on my arm faded a bit but now over my face ...yikes not a pretty sight but it's only cosmetic.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi All

I've had good news my tumour markers are now down to 1600 from 2900 3 weeks ago so going in the right direction. I’m on my third cycle of cape, I’m finding it quite hard to manage, I eat and then 2 hours later I’m on the loo. Every meal!! I’ve tried the Imodium given to me by chemo nurses but this just gives me worse stomach ache. I’m not sure what to do, it really restricts what you can do, I spend the majority of my time at home because of the tummy problems, just wondered how others managed it!

i have also had my dose reduced for 3rd round from 2150 to 1650. But no change to tummy or fatigue.

any suggestions welcome! 

Good luck to all cape crusaders! 

 

Bel xx

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

hi all,well i told the onc that i had bad constipation and he said no this meds gives you diarrhoea.

well i guess that's it then. i have bought some Movicol though, on the sly!

ramade xx

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

Hi Ramade, if you decide to give it a go get one as natural as you can, and if you find it helps it’s very easy to make your own, trust me if I can anyone can! Kxx

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

Thankyou Kate i will look into Kefir

Ramade, hugs to all xx

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

Metoclopramide is the third anti sickness drug i have taken, (been feeling sick for over a year now and only just started cape) and it seems to work better than any of the others. Still don't feel like eating.

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

Hi All ,

 

It sounds like we all have the same SEs...tummy ache, diarrehea followed by constipation and a sickly feeling after eating. Also my fingers have started to crack and bleed. But if the pills are doing their job, I guess I'll keep on popping !

 

Also, thanks everyone for travel advice

 

Love to all..GG xxxxxx 

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

Hi Ramade, have you looked into taking Kefir? It certainly helped me when I had problems with infection after some dental work, which I appreciate isn’t your issue, but two friends of mine..one did have bowel problems, the other more digestive (ulcer and indigestion)..have found it has helped them, so it may be worth a try. Kate xx

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

Yes agree but hate all these things . At the moment I just feel sicky so taking Metoclopramide which hospital have issued ..not sure if it's working that much ....but I'm trying to eat something ....
Chatting with gp next Monday (no appointments ) so telephone help with all this medication .
Sympathise with constipation ..hate it ..spent an hour in loo yesterday trying to shoot the rock out! Too much info ..whoops .
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Re: Xeloda / Capecitabine - Your Top Tips, please?

thanks Carolyn, i really want to stay on it because it's working.

Ramade x

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

Ramade

I don't get on with Gaviston ..doesn't do anything for me at all. I use rennie tablets and things the hospital prescribe for the trots or constipation. Horrid side effects to deal with .....xxxxx.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Can anyone help, side effects are really sore tummy and either  constipation or diarrhoea. Does anyone take gaviscon for this?

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

Hi Lynn

I don’t have any links to the armed forces but my Dad did and I think it was through him that I found out about this policy. I still think it’s pretty reasonable even without the discount. The past couple of years I haven’t been able to travel further afield due to being on chemo so have used Eurotunnel again for European trips. As I’ve said I’ll try and update the travel insurance thread and let this thread get back to its roots!

Having said that 8 hope all Cape crusaders are coping with the side effects and any dosage reductions help, but still kick the little uggers hard.

Nicky x

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

Hi Nicky.  We also use Axa Ppp and have done for three years.  I have claimed once on a trip to Majorca for UTI and submitted the receipts when I returned home and received a cheque back from them within a week..

Like you say it Covers both of us = another benefit for us is that there is no age limit, a lot if insurances only cover up to 70 and my husband is 74 now.and has had a minor heart arrack.

i discussed the terminal question with my Onc and he said that he didn’t consider.secondsry as terminal, these days it is incurable but treatable and he said that he saw no reason why we shouldn’t be having the same conversation next year when it is due to be renewed again.  He did say that he can’t predict the future but then nobody can about anything.

when I rang and spoke to the insurers I mentioned this to them and the lady asked me if I had ever been told that I had less than 12 months to live, I said no and she said that wsa all she needed to know.

Do you have any connection to the military - we both served and were told that the price was discounted because of that.

 

 

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

have a good time Nicky, if you feel that you can do it, go girl

ramade x