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Xeloda / Capecitabine - Your Top Tips, please?

Barton
Member

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

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

2catlady
Member

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

Belinda,that's exactly what I thought are they supposed magically float up in your mouth! Lol. Well I handle mine and have had no problems.
Never heard the milk one. I drink loads for calcium as I'm on denusumab .please let us know what he says about milk.
Barton,I'm still on cloud 9 lol. Hubby brought a bottle of bubbly to celebrate last night,but I thought I better not have a glass as bloods this morning. But I may have one tonight before the awful nausea kicks in.hick ...
Huge hugs ladies ,Helen xxxx
belinda
Member

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

Ah me and marilf, the late Xeloda Queen, had a chuckle about the don't handle the tablets warning once Helen. She had been told the same by a Chemo Nurse. Perhaps you're supposed to pick them up with tongs. 😜 The milk one is a new one to me Barton. I drank milk all the time through Cap. Was on it nearly five years. Be interested to hear what your Onc thinks. Take care all.
Barton
Member

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

Thanks, Helen.  I haven't heard that one either. I read something on the American site yesterday that said you are not supposed to drink milk whilst on Cap! That's a problem for me as I drink a glass of milk to reduce acid indigestion some nights. Perhaps I'll ask Onc sbout that next Thursday. I do know that grapefruit is a definite no-no, but that was the same with the IV chemos I had in 2011. The chemo nurse warned me again when I had me Chemo meeting before the first Cap cycle.  By the way, have you come down to ground yet after your wonderful news yesterday? I bet you are still walking on air! And you deserve it!

Best wishes to all the Cap gang, Barton.x

 

2catlady
Member

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

Hi,cap gang,when I was picking up peachy devil pills today nurse said try not to handle them as they can irritate skin!! And wash hands after touching them! I said that's a new one on me! I've not been told that!
Just thought I'll pass that on,hugs,Helen xxxxx
bertie1
Member

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

Hi Jo welcome to the Cap gang .
Like Helen I haven't lost any hair on this one and am just finishing my 5th cycle,the only side effect I've had is sore hands and feet but my onc reduced the dose for me.I have a scan on 5th Jan so hopefully it will show improvement to the mets in my liver and spine.My TMS have dropped from 194 to 28 after 4th cycle so hoping this is agood sign.
Hope everyone else is doing ok.
Take care all
Kaye xx
2catlady
Member

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

Hi,jo,welcome to the cap gang,
I haven't lost any hair at all as you keep your hair on this one. I'm VERY sickly so take anti sickness pills ( but I'm sickly with most things) you can get very tired too . Moisturises your hands and feet a often as you can. Cream with Vaseline on feet is great. Put socks on to keep moisture in. Same with hands and put white cotton gloves on while it soaks in.
I'm about to start 5th and have had good results so far. Good luck with the peachy devil pills.
Please join in with our chats and ask us anything,huge hugs,Helen xxxxx
Bevlaar
Member

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

I had 6 cycles of cape jojo before it stopped working. I didnt have any hair thinning or loss and actually had very minimal se's. Mainly diarrhoea on my week off it! Keep moisturising your hands and soles of feet especially heels to avoid cracking but that will prob not happen for a few weeks yet if at all. I just had some cracking of skin on left heel. Good luck and i hope it works well for you xxx
jojo22
Member

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

Hi all, I'm starting my 1st cycle of Cape in 2 weeks, have just finished picitaxol and avastin 18 doses, worried about side effects as tolerated last chemo well, used cold cap so have not lost hair, hoping the cape doesn't make it any more thinner. Any top tips to prepare please

Bevlaar
Member

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

Wow helen what better xmas present eh? Im so pleased its working for you. Good luck lovely lady! xx
Barton
Member

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

Oh, Helen! Such wonderful news! That is a brilliant Christmas present for you! It gives us all extra hope, too. I am so glad for you. Love and cyber hugs to all Cappers. Barton.x

2catlady
Member

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

Hello cap gang,cap is working for me. Bones are showing healing,lung mets have reduced and some smaller one disappeared and liver mets are smaller!!!! Soooooo happy ,great Christmas pressy. So the peachy devil pills are doing their magic ,so hang in there ladies.
Huge hugs ,Helen xxxxxx
Barton
Member

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

Thanks, Helen. Yes, on one level I know he has probably just forgotten, but on another level....well, you know what I mean. Thanks for the reassurance though anyway! Much appreciated. Barton.x

2catlady
Member

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

Barton,don't worry if he's anything like my dopey onc he's forgotten. Mine forgot to order CT scan !!! Letters take ages to get written up and sent out.
Huge hugs,Helen xxxx
Barton
Member

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

Sorry for abrupt ending there - tablet being very un-cooperative! Meant to end by saying, love to all Cappers. Barton.x

Barton
Member

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

Thanks, Helen & Kaye. Yes, I'm a little concerned as Registrar promised he would write with results! The hospital doesn't normally keep me waiting this long - I usually get them the following week. Does this mean he read them wrong, and I should be worrying (already am, anyway!), or has he just forgotten? I see Onc (or Registrar) again next Thursday, and will ask then, but it's really frustrating after a promise! And it will be 4 weeks then! Helen, I do hope you have more luck than I did and really do get your official results tomorrow.

bertie1
Member

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

Hi To all the Cap gang.Spurs welcome you will get lots of support on here from all the lovely ladies.
Helen good luck with your results tomorrow ,I have just had date for my ct scan which is Akan 5 th so at least I,lol be able to enjoy Xmas and my holiday without worrying about results.
Barton still can't believe your hospital keep you waiting so long for results,I have a scan on 5th January and will get the results two days later when isee my ONC.
Hope everyone else is doing ok
Take care all
Kaye xx
2catlady
Member

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

Hello spurs and welcome to the cap gang and manky toe gang too. NED oh wow that is fantastic !!

Barton,I can't believe you still haven't got report after three weeks. I get my results tomorrow,yikes. Really scared!

How's every one doing? I start fifth cycle on Friday if bloods okay.
Huge hugs cappers ,Helen xxxx
Barton
Member

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

Hello, Spurs and welcome! It's wonderful you are NED, but it's worth the belt-and-braces approach of your Onc. I'm just coming to the end of Cycle 7 pills - last lot tomorrow morning (thank heaven - I'm finding this cycle really hard - mostly tiredness, but sore fingers and feet, too). I had a CT scan 3 weeks ago but have still not had the official report (although Oncs. Registrar did say he had had a look and everything looked ok), so still a little nervous. I'm absolutely amazed that you are managing to work full time - I bow to your perseverance and dedication! I'm only working 2 and a half days and by the second day I'm exhausted. Luckily I don't have to do the half day until Friday! I have been very emotional today, too. Crying in the office is SO embarrassing! Someone only has to say or do something kind and I'm off! Today someone gave me a cup-a-soup and I was off! I'm so fed up with it all! I love coffee but it tastes revolting at the moment. I'm finding it so hard to find enough to drink that either doesn't taste horrid, or I'm not completely sick of. Sorry for such a whinge when all I meant to do was welcome you to our Cap gang! And sorry for a large wedge of text with no paragraphs - my tablet won't let me do paragraphs without crashing, but my phone (with much less power!) will! Anyway, best wishes to Spurs and all other Cappers. Barton.x

Mowser
Member

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

Hi Spurs 79,

 

Sorry to hear you have had an emotional day-I too had a bad (emotional) night, couldnt sleep mind going hey wire with everything we are dealing with! The next day always seems brighter so I hang onto that thought while I am going through one of those low moods.

 

My toenails are manky too!! Went to docs to get antibiotics just in case I think they are getting worse/infected, as I dont want to risk coming off the chemo (Cape) as for the moment it seems to be working for me, despite all the aggro that comes with it!! I have this week off (sooo happy to get a break from it!) and need to start again Wednesday next week. I will be starting round 12 next Wednesday... MRI to spine next Friday...

 

By the way, you are doing just great!! NED is a VERY good place to be, and Cape seems to work well for a lot of women on this site, so I am very confident it will work for you too. You are still working full time -that is fantastic!!! I really miss my work, but at the moment I just couldnt cope with the demands, it is a full on, high pressure job with lots of deadlines-it would be way too stressful!! My work have been amazing though.

 

My oncologist has told me they have an arsenal of different treatments to use, so when one stops working, it is not the end of the world by any means-you just switch until they find something else that works as well. They can even take you back to cape after a long break from it, as the cancer forgets how to resist it, and for many women it starts working again years later! 

 

So in a nutshell, GO YOU!!! Hope you feel better tomorrow -Christmas is coming-a time to spend with our loved ones, I cant tell you how much sweeter and more precious this time with my family and friends is now.

 

I am off to a conference tomorrow about Living with Secondary Breast cancer and I think that will be really helpful-to meet other women in the same situation, anc get help and advice about how to manage better this disease, and the drug side effects!!

 

Take care, stay warm, lots of love

 

Mowser xxxx 

Spurs79
Member

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

Hi, this is the first time i have posted...hope no one minds me joing in. I am on cycle 6 of cap and have a ct scan on Monday. I was dx March 2013 aged 34 and had a mastectomy and ANC, 3 lots of FEC and 3 docetaxal, 30 sessions of radiotherapy and thought i was done with treatment for a while then I had a regional recurrence in June this year and had the lymph node removed so started cap with no evidence of disease. Fingers crossed next weeks scan shows the same.  I have found cap ok....as a few of you have mentioned i can't stand coffee and i am so tired. It was reassuring to read people saying the same thing i am still working full time and most evenings i am in bed by 9pm. I have suffered with sore hands and feet but have very painful toenails and hadn't assocaited this with the cap. Other than that i have what seems to be the usual stuff....a bit of nausea and i have diarrohea very often. The tips on here have really helped i was having a very emotional day today and reading this thread helped...thank you.

Barton
Member

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

Julie, so sorry to hear Moneck has been so poorly lately! I do hope she feels better soon. It must be a really worrying time for her. I'm mentally sending her my best wishes. Barton.x

bertie1
Member

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

Hi Julie please pass on all our love to Moneck ,let's hope she gets better soon and is home for Xmas.
Sending her lots of hugs
Kaye xx
2catlady
Member

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

Hi,Julie d thank you for letting us know about Moneck. What an awful time she's had. Please pass on all our love and good wishes to her.
Huge hugs,Helen xxxxx
Bevlaar
Member

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

Sorry to hear about Moneck Julie...please pass on my love and best wishes and lets hope they put her right so that she can be home in plenty of time for xmas. She's in the right place though xxxxx
JulieD
Community Champion

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

Hello Cap girls, I don't normally post on this thread but just wanted to let you know that Moneck has been quiet because she is in hospital. She has been in for a couple of weeks now, she had to have an op for a blocked small bowel, I think. Now her stitches are leaking and they think that's more likely to be down to her mets so she is leaving the surgical ward and going onto oncology ward. Not sure how long she'll be in but thought you'd like to know.

All the best to you all, Julie xx

Mowser
Member

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

That has reassured me if you getting pain there and not even got liver mets!!  nd ni, I dont think you have anything else going on at all!!

 

Yes, ever since been on them, get phases where I feel really bloated and full, and have pain twinges there. I have talked myself into believing that it could be the Cape tablets actually working on the tumours themselves and this causing the liver to react rather than anything ominous!!

Else
Member

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

Hi Mowser. I started getting pains in my right side sincer taking Cape, it flares up at night and gets better in the day when moving aroiund. I did not have any liver mets at my last scan in September, only in my bones, so I don't know now if this pain is caused by the tablets or something developing in my liver. I note you have taken them since March. Have you suffered pains and side effects all this time.

Although I have some loss in appetite and taste changes, I do not suffer from bloating and breathlessness.

Hoping that things will soon get better for you.

All the best

Else
Member

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

Thanks Barton for clearing that up. I might ask about mine it is not something I am told automatically.

 

Regards

 

2catlady
Member

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

Hi,Mowser,I get pain on my liver side since starting cap. I can't sleep on my right side as it's quite painful. As for bloated tum,I'm not sure with my muffin top what's bloat or fat!!
Hugs ,Helen xxxx

Hello,the rest of the cap gang,hope we are all doing okay xxxxxxxx
Barton
Member

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

Hello Else, in answer to your query re.TM. It's shorthand for Tumor Markers, and it's something the Oncs check for in your blood tests. I'm afraid I have been too chicken to actually ask about mine, but I know they ask for them as last time I had a blood test, the form had a couple of codes at the bottom which the Practise nurse said was for Tumor Markers. Best wishes, Barton.x

Barton
Member

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

Mowser, sorry, I can't help with se's re.liver mets as I don't have them. I just wanted to sympathise and offer support. Sorry to hear you are suffering similar symptoms to before starting Cap. Can you contact your chemo dept and ask them? If not, I expect someone else on here may be able to help. Wishing you all the best. Barton.x

Mowser
Member

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

Hi everyone,

 

I have been on Cape since March now-on 11 th cycle I think. Have liver and bone mets, diagnosed in March. Have been reading about all the side effects you are experiencing and can completely relate.

 

One thing I wanted to ask-do you still get liver pain and a very bloated abdomen when taking it? I always worry this is my liver mets kicking off again, as when I was first diagnosed this is how it felt, I was so so bloated and felt breathless and unable to eat a complete meal without feeling really uncomfortable. 

 

Just wanted to know if youexperience a bloated stomach and feeling of fullness too? 

 

Mowser xxx

Else
Member

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

Hello again. I thoiught I would see what had been happening on the thread, which I joined a couple of weeks ago whan I started my treatment. It is great to share other peoples' experiences. What really surprises me is how different our experiences are.

I have now had 2 cycles and going to start the 3rd tomorrow. I have found it quite tough, feeling nauseous much of the time, my hair has stopped growing, I am getting pains in my side, possibly liver, and my hand and feet are a red and sore. And I cannoit stand anything sweet! I am going to have a word with my the nurse tomorrow to see if it is still OK to carry on with this dose. I have one more cycle before my scan on December 22nd to see if it has worked. So I just focussing on getting through this, and then see what comes next. I noted that someone mentioned taking it for 1 week and then 1 week off, that may be a better option if you have to carry on with it.

I think the trouble is to keep positive whan you are not feeling terribly well.

Someone (sorry cannot remember the names of you all) mentioned a TM count. I am sorry to be so ignorant, but I have no idea what this is.

 

All the best

 

 

Barton
Member

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

Bumping thread.
Also, how is everyone doing? Very quiet on here again. My se's are giving me a bit of trouble but have wondered if it's because I'm not drinking enough - have to admit that I haven't been very good this cycle (or the last really). Getting so fed up with plain water. Have tried Ribena, which helped for a while but now getting fed up with that! Any suggestions, anyone? Not orange juice or squash though as that is tasting horrid at the moment. Thanks. Best wishes to everyone. Barton.x

Barton
Member

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

Hello, Helen - so glad you are feeling better now you have finished your antibiotics.  I know they can sometimes make you feel ill, too. 

 

Katherine - do hope you are feeling better now.  Hope you contacted your chemo nurse in the end and got some real help!

 

Best wishes to everyone else, and hoping the SE's are mild to non-existant for everyone! (dream on, I knowSmiley Wink).  Hugs to everyone, Barton.x

2catlady
Member

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

Good morning cap gang,how are we all doing?
Have manky toes all settled. My infection has finally gone yippee after 10 days of antibiotics.

Katherine how are you feeling now?xxxxx

Barton,glad H and F okay. It will be great to read report saying it's working having it in black and white in front of you will be a huge boost xxxxxxx

Nicky,it's great to hear from someone whose done cap xxxxxxx

Kaye,hope feet and hands are settling for you now it's week off peachy devils xxxxxx

Huge hugs to all of the cap gang,Helen xxxxxxxxxxx
Barton
Member

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

Thank you, everyone for all your best wishes - yes, really pleased now I have had time to get over not having "official" results. At least he promised me he would write when he got them. Helen, glad you are feeling slightly better - just remember what other people have said, and think of it as the bone lesions healing (not as easy as it sounds, I know!). Katherine, hope you are feeling a bit better now - you've really been put through the mill, haven't you? I'm still thinking of you and wishing you all the best. Hope everyone else is feeling OK-ish. Hands and feet hopefully healing. Sorry, can't remember who asked, but yes, I seem to have worse se's on week off, and as someone else said, it's the Cap at its height - do you feel slightly better the first 2 or 3 days of the next cycle? I do, sometimes. Hugs and best wishes to all Cappers, from a still itchy Barton.x

nicky08
Community Champion

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

Great news Barton 🙂
Hi to Katherine, I hope you are feeling better but if not maybe the chemo ward/nurses can help. Reading of Bevlaar's experience on docetaxol she obviously needed some better medical intervention than just a phone call.
Hi to all Cappers, from a previous user and now supporter 🙂 Hope it is kicking the uggers into touch and SEs aren't too bad, even though for some of you it sounds like they are 😞
Nicky x

2catlady
Member

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

Good morning cap gang,how are we all?
Katherine ,how are you feeling now,have antibiotics kicked in?
Kaye,your poor H and F take a bashing. I get SEs on week off too. I think it's because the dose is at it's peak by end and bloods are low.?!
Barton,hope your still on cloud 9 celebrating. Yes,thanks,feeling like me again but spine still painful.
Stay strong and huge hugs,Helen xxxxxx
Margaret222
Member

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

Katherine, I too have to inject myself with Fragmin, as I got a dvt with cape. So I do know where you are coming from...bad enough having to inject without an allergic reaction as well!
Margaret222
Member

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

Absolutely, yes red, but not sore. Actually tonight I was lookng at them and they have red weal type patches...i keep getting cellulitis and im sure its due to tiny cracks!
bertie1
Member

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

Barton go girl fab news on your ct scan results ,you must be really pleased and on cloud 9.
Helen and Katherine hope you're feeling a bit better.
Well just finished my fourth cycle and hands and feet have been ok up to today now they are quite red and sore,strange how it happens as I just finish the Cape,does anyone else have side effects on their week off.
Love
Kaye xx
Barton
Member

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

Thanks so much, Helen. Yes, really pleased, but will feel better when I get the full written report. Shouldn't look a gift horse, etc., though! Are you feeling better now? Have you got your pain under control now? I do hope so. Hugs, Barton.x

2catlady
Member

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

Hi,Barton,yippeeee to CT scan looking good. I bet you feel on cloud 9 now.
Huge hugs,Helen xxxxxxxx
Barton
Member

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

Hello Cappers, well, saw Onc this afternoon. No CT scan results yet from Radiographer but Onc was happy with what he saw when he had a look, so that will do me for now. He is going to write when he gets actual results. All set now with Cycle 7 tablets.
Everyone is quiet again. Hope everyone is doing ok, and that Katherine and Helen are both feeling better. Barton.x

Barton
Member

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

Katherine, hope you are feeling better today - we all feel for you, and are hoping the antibiotics have started doing their job at last!
Desi and Elily, sorry to hear you have both had to join us, but everyone is very friendly and helpful - please jump in whenever you feel like it!
Helen, I hope you are feeling better this morning, too. We've all been worried about you. Hope the pain eases soon.
Thanks, everyone for the support re.meltdown. Still getting some sleep on the Piriton substitute, but itching still. I don't think it's going to stop until I can come off the Fragmin (supposed to be on it for 3 months, although have done about 5 wks, I think). Seeing Onc this afternoon anyway re.CT scan results and next lot of pills, so will ask about Fragmin.
Good luck, Cappers. Best wishes to all. Barton.x

bertie1
Member

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

Good to hear from you Helen sorry you've been feeling rough hope you feel better soon,we were all getting quite worried about you.
Barton hope you're feeling better today .
Hope everyone else on Cape is doing ok .
Take care all
Kaye xx
2catlady
Member

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

Good morning cap gang,sorry for radio silence,I've been feeling a bit rough and in a lot of pain the past few days and haven't had the energy to post.

Tracy,welcome to the cap gang. Sorry,you had to stop FEC but that can be kept for later. And cap will do the business for you. .xxxxxx

Katherine,huge hugs,you are not coming to the end. Your in a rough patch with SEs you are not winging .your body is taking a battering at the moment with non stop chemo. You just need the antibiotics to kick in and you'll be feeling much better. Stay strong we are all here for you lovely lady xxxxxxxxxx

Barton,I have meltdowns all the time so don't worry. Living with this dammed disease can put a huge emotional strain on you and you need to release it xxxxxxx

Kaye,hope your doing okay xxxxxxx

Huge hugs to everyone in the cap gang,Helen xxxxxxx
bertie1
Member

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

Hi Barton sorry you had abit of meltdown we all get like that sometimes hopefully the antihistamines help,that's great you had a decent nights sleep it's the not sleeping and feeling tired all the time that's hard.x
Katherine no one thinks you are whining we all have tough times with this crappy disease just rest until lit passes.x
Bev hope you're feeling abit better xx
Desi welcome to the Cap gang hope the treatment works for you xx
Helen hope you're feeling ok we,re all abit worried about you.
hope the rest if Cap gang are doing ok.
Love
Kaye xx