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Xeloda / Capecitabine - Your Top Tips, please?

Glo
Member

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

Anyone had a hoarse/husky voice from cape? If so how long did it last and is there anything you can do to alleviate it?
Friends say its "sexy" but finding it very annoying not being able to chat properly!!
Glo
Member

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

Hello Glo, yes, I was referring to 2catlady (I hope she doesn't mind!). Isn't it strange how different peoples experiences can be with the same hospitals! Wow! Anyway, hope your soreness wears off soon and glad you are feeling so much better already. Hugs. Barton.x
Glo
Member

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

Thanks Barton.
Is Helen 2catlady? If so from things she's said I believe her original hospital is the same one I go to, and have to say they are brilliant!
Can't believe how much better I feel in the space of two hours! A little sore where they drained the fluid but that will pass!
Glo xx
Member

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

Hello Glo. Many thanks for your congratulations. So glad you plucked up courage and rang the Day Unit (I bet you are too!), and so glad they were so helpful. My Day Unit is excellent, too (when I rang them on a Sunday last October re my possible (definite!) DVT). Shame all units can't be as good - take note, Helens hospital! Glo, I hope you have a much more comfortable weekend than the last few days. I expect you are right - I would imagine it's too early to think that Cap is not working (I know you can't stop your mind working overtime, though).
...Posting from my phone, which, unlike my tablet, will let me start new paragraphs without crashing...
Hello to you, too, Nicky!
Best wishes to all others in the Cap gang! Thinking of you all and hoping for few (preferably none!) se's for everyone. Hugs. Barton.x
Glo
Member

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

Thanks for all the advice. Phoned onc day unit, went in, got abdomen x-ray, chest x-ray, bloods. Pleural effusion picked up on scan in March has increased so they drained it there and then, gave me some steroids for a few days and see onc on Monday. Feel better already. Have to say fantastic service from the day unit!!
Hope the increase in fluid doesn't mean the cape isn't working but only had 2 cycles so could be too early to tell.
Thanks everyone
Glo xxx
Member

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

Hi Barton

I've only just seen your post.. And am so chuffed for you.... Good news is exciting for everyone and and so glad you posted it... It makes me feel so glad and makes me more positive to hear these updates... Pls always post them everyone...

Enjoy every minute of your break from chemo and all its se's
(( congratulations hug)))

Corinne.. Xxx
Glo
Member

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

 
Glo
Member

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

Thanks for the reply Nicky.
My dose was reduced to 80% after the first cycle, but I have lost weight due to not eating which may affect the dosage as it's based on height/weight! I have changed the anti sickness meds from metoclopramide to ondansetron as the original ones didn't work! Hands/feet fine at the mo! Going to ring the day unit today and see what they say. Due in on Monday for bloods and next tablets but will pre warn them I think.
Thanks for all the advice
Glo xxx
Community Champion

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

Hi Glo
Just seen how you are struggling on Cape. I must admit it took me a few cycles to eventually feel OK on it, I hated it and thought IV chemo was 'easier' when I first started the tablets. However one thing I did find out, by reading on here, was that it was the anti nausea tablets that I was taking that we're causing most of my side effects! They absolutely wiped me out and spaced me out and it was only by chance reading a post on here about the side effects of those tablets that made me question taking them. I had my dose of Cape reduced to 80% which I was told by my onc is quite normal to have! and stopped the anti nausea tablets. I didn't suffer from nausea at all after that either - I know it was all mind games having had bad nausea on FEC. It may be worth changing or stopping the anti sickness tablets? I can't remember the name off the top of my head which ones it was that caused it but it's the most common one (ie the cheapest!) that is usually given and when I had docetaxel last year I made sure I was prescribed a different anti nausea tablet. Even after stopping the anti nausea tablets it did take a few cycles for my body to adjust to the Cape and I did feel much better on it than I had when I started it with very little side effects other than the dry feet and hands. Hope you get sorted soon.
Nicky x
Ps Hi to the rest of the Cape gang x
Member

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

Hello again, Glo. I have had IV chemo (FEC-T in 2011 at my original, primary, diagnosis - had 3 yrs on Anastrozole before it stopped working and mets diagnosed), and I found that harder regarding aches, pain, and generally feeling like cr@p, and Cap is easier, but that still doesn't mean  easy. After all, it is, still, a poison! Don't beat yourself up for feeling bad! Good luck with getting your dose lowered again. Hugs and best wishes, Barton.x

Glo
Member

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

Barton, thanks for the reply. I think as I've lost weight recently with not eating that maybe effects the dose!
I'm due for bloods and new set of poison on Monday but think I will phone the onc day unit tomorrow and pre warn them! Last cycle they reduced them after I had stomach pains and gave me an extra week off. Won't know if they are working for a few cycles yet but really don't want to do IV chemo, esp as Cape is supposed to be an easier option!!
Member

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

Oh, hello, Glo, and thank you for congratulations. I'm so sorry to hear you are having such a hard time on Cap. I'm afraid I can't answer your question as to how much of a dose reduction you can have and it still be effective, but I do know your Onc should be sensitive to your se's and your suffering. I have read that a dose reduction (presumably, though, there will be a limit on the reduction) is just as effective. I believe it is the constant drip, drip of the drugs attacking the cancer cells that does the trick. I myself have had a dose reduction. I did 7 cycles on 4000mg per day (I was told by my Onc at the time that that was quite a low dose - I think he was referring tactfully to my weight!), then had an 8 week break due to breathlessness and tiredness (supposed to be 6, but it started after the rest week of my 7th cycle and then I had to wait another week for the pills to be ready). When I went back on the pills early this year, I asked for the dose to be reduced to 3000mg, but was told that was too big a drop, so agreed to 3600mg per day. I managed that for 3 cycles, then, as my tumour markers had reduced to the 20's, and my stomach was looking like a war zone due to the Fragmin (blood thinning) injections, the Onc suggested I have another break so I could go on to Rivaroxaban tablets for a while. I'm so sorry that I have rambled on for so long. I hope at least some of this info will be useful! Please speak to your Oncology team and let them know what a tough time you are having. Best wishes, Barton.x

 

Glo
Member

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

Barton, Glad your doing well! At the end of my 2nd cycle and had enough already!! Very mixed 3 weeks! Only SE is digestive issues, stomach cramps, full feeling, no appetite, not feeling nauseous as meds work, but this week felt lousy! Some days have been ok, but never really great. Last Sunday had a brill day, could have run a marathon, but... Was on 2500mg x 2 a day, been reduced to 2000mg x 2 a day but not really made much difference.
How much can the dose be reduced and still be effective?
Member

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

Helen, thank you so much. I wondered about posting, but I know how uplifted I feel and how excited I get for other peoples good news. I have celebrated with M&S chocolate truffle sauce and strawberries for dessert this evening (I don't drink because I don't like the smell even). I hope you have managed to get some relief from your pain, Helen. I am disgusted with the way you have been treated by all your medical "support" (hah!) personnel! Hugs and best wishes, Barton.x

Member

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

Oh,barton, that is fantastic news. You go girl. Oh,please never think about not sharing good news. I love hearing good news.
You go and celebrate ,massive hugs,Helen xxxxxx
Member

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

Hello, Glo and Ann, how are you both doing now with the Cap? I do hope you are finding it a little easier these last few days. I hope you are both finding it not so hard eating enough to take the pills with. As others have said, please don't think you have to suffer in silence. Your Onc and team should listen to you and help with anti-sickness meds/rest periods/dose reductions. Hugs and good luck. Barton.x

Member

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

Hello, lovely ladies. Now, I feel rather guilty sharing this news when there are so many ladies suffering pain and set-backs at the moment (Helen, Bev, Corinne, and others I know, but chemo brain has removed your names I'm afraid - so sorry!), but I also know how cheered I am when anyone else posts good news, so I will continue. I went to Onc appointment today, thinking it would be the end of my Cap rest period. However, I was told that as blood test results from 2weeks ago were still good (TM's in 20's still), and as the CT scan I had yesterday (no official Radiographer results yet but he had had a look) looked stable, I can have another 6 weeks rest! I am over the moon! Smiley Happy I do have to have another blood test in 4 weeks, and have another Onc appointment in 6 weeks, but for now I am free of the peachy pills! Hugs and love to all, Barton.x

Member

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

Hi,Ann,I was very nauseous with cap. I took anti sickness pills,cyclizine (GP prescribed them for me )throughout cycle. It was the eating when you feel sick is dreadful .
Don't suffer,huge hugs,Helen xxxxxx
Member

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

Hi Ann - Sorry you're having a rough time.  I know what you mean about the thought of taking cape.  I had a lot of fatigue and have had my cycle changed to one week on and one week off and it is just as effective (so the onc/pharmacist tells me).  This has made things a lot easier - only got to force feed myself for 7 days at a time.  Perhaps you could ask about this.

 

Tink x

Glo
Member

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

Hi Ann, I too have just started Cape, just at end of week 2 of second cycle. First cycle was awful! Very tired, stomach issues, more like acute IBS symptoms. Called onc day unit, they checked me over, gave me an extra week off then reduced dose to 2000mg twice a day, instead of 2500mg twice a day. Started 2nd cycle, a bit better, still very tired, stomach bit better but still find it difficult to eat normal amounts and had nausea. Have changed anti nausea meds which are better. I have gone off lots of foods and unfortunately wine!!!
Day 14 today and amazingly I feel great!! No idea why but long may it continue!!!
I find it difficult to take tablets 12 hours apart. After a breakfast about 9 am then evening meal about 7 is my routine.
I have been told not to " suffer" so if you feel that bad I would contact your onc unit and they should help with either reduced dose, and advice.
Good luck and I hope things improve
Glo xxx
Member

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

Hi Ann I was on Cap for four and a half years. Yes, as Barton has said, you do need at least ten hours between doses, preferably twelve. With this chemo you can have the dose lowered with it remaining effective so you may want to see if this would help. Good Luck. X
Member

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

Ann, welcome, but sorry you have had to join us! And sorry you are feeling so rotten! Yes, I think you should take the tablets as close to 12 hours apart as possible (not always convenient, or possible, I know), but all the literature says you should. I am currently on a break from the Cap (probably coming to an end shortly - depending on the results of the CT scan I am having next Wednesday), but I do try to take them 12 hours apart. When on the tablets I take them at 6.30am and pm (as close as possible). I am lucky, I don't suffer from the nausea (the diarrhea, however, is a different story!), but when I first started on the Cap I was given anti-nausea tablets just in case. I have not, so far, needed them, thankfully. Did your Onc team give you anti-nausea tablets? If not, you should ask for them. I know what you mean about dreading taking them long term, however my Onc has so far let me have 2 breaks of about 7 weeks each. I could not have managed to do it without. I am dreading going back on the tablets. They are considered an easier (not easy!) chemo than IV chemos. Hope this may have helped a little. Hugs and best wishes, Barton.x

Member

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

hello cap ladies.Just over a week in to my first cycle of cap. I feel constantly nauseous and cannot face food although I know I have to eat in order to take the meds.I feel miserable and the thought of continuing this for some time is awful.I look at the tablets and shudder. Well another 5 days and I get a break. I take my morning tabs about 9.0 - 9.30 after a forced slice of toast and then my evening ones at about 6.0pm. Just read a post that said they should be 10 - 12 hours apart. Do yoy think this may help. I feel so rotten. Ann

Member

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

Hello. I am new to the forum. I have been on capecitabine and denusomab since january 2014, with a couple of breaks. I have found the winning formula for the sore (understatement!) feet that works for me. Skechers memory foam shoes and aveeno cream. I tried flexitol and still sometimes use it at night, with spa socks, but the aveeno is the biz. My GP will prescribe it. Sometimes my feet are so cracked that they bleed. Then I put on fucidin ointment from the GP -originally prescribed for my hands and it heals within a day or so. I actually hate the denusomab injection nearly as much as the Cape but I am keeping well and stable so bring it on!
Member

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

Cotton socks are useful but mine always fall off. Anyone tried clingfilm? Sounds a bit kinky but I have seen it suggested somewhere!

I use Udderly Smooth cream or Flexitol (both have a significant amount of urea (yum) to soften skin) and as an alternative to Vaseline I use Waitrose Baby Bottom Butter (tub version) which contains olive oil and camomile oil.

Member

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

Thank you ladies for the help .... I shall buy some thin cotton socks and get the creams going , I may do the same with hands. Must remind myself to worn hubby before he see's me !!!!!!

Liz xxxx
Member

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

Hi Liz, I'm the same as Ruth and have been on her one week on, one week off for 18 months as well, it does make the feet/hand syndrome much more manageable. I've just been lazy,not moisturised enough and now have a little split under one of my toes but normally find Vaseline and socks at night help a lot (as well as adding to one's general allure, of course!) Best of luck, think the regime above might be a Marsden one? Xx
Member

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

Hi Liz. I had this problem with cape, including the swollen feet, and the soreness under the feet was unbearable, apart from losing several toe and fingernails!!! I was on two weeks on a d one week off. Have now been on one week on and one week off for the past eighteen months and was assured the reduction in dose would make no difference to the effectiveness of this drug. Much relief regarding hands and feet and no swelling at all now. Might be worth enquiring about a reduction next time you see your onc.

Good luck
Love ruth xx
Member

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

Hello, Liz.  Sorry you are suffering this side-effect!  The sore feet thing is a very well known se of Cap, and the standard treatment (advice from fellow sufferers) is to moiturise your feet as much as possible.  It also helps if you can stay off them as much as possible, but, of course, this conflicts completely with everyday life!  So almost impossible, really. Is it possible to moisturise in the evening, and then put your feet up for a while before going to bed?  Also swollen - hmmm.  I think it might be an idea to mention this to your Onc when you next see him/her.  I didn't suffer from swollen feet, but got the hot, "walking on a mix of broken glass and hot coals" feeling - yes.  I also get an itchy rash, but I get mine on my hands.  My GP gave me some stuff to help. 

 

Sorry if this is a negative post, Liz. 

Member

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

Hi all,

Have some feet problems...... Sore itchy and swollen , any help?

Hope everyone are as well as can be.
Liz xx
Member

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

Hi glo,
I feel exactly like you. The feeling of bloating and not able to eat much. I have been eating tiny meals and a yogurt when I don't feel like anything.

All the best
Liz xx
Member

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

Hello, Glo, sorry you have had to join us. I haven't suffered from the bloating/pain that you have, but I believe it is a known se of Cap. Not  much consolation, I'm sure -sorry about that. I do, however, suffer from indigestion, but I have never had much trouble getting rid of it (if you know what I mean!). Hope the pain and bloating subsides soon. Hugs, Barton.x

Glo
Member

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

I have just started this treatment for lung and liver mets, at end of first 2 weeks, and about to start week off. A bit tired but main problem is stomach pain, bit hard to describe but sometimes bloated, windy and an ache that stops me eating much, constantly feeling full. Is it a direct result of the tablets in the stomach?
Any advice greatly appreciated!
Glo x
Member

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

Hi Cap gang welcome to the newbies sorry you've had to join us but you will get plenty of support on here from all the ladies.I have been on Cape since August last year and hve just finished my eight cycle ,I too have had breaks due to sore hands and feet and low blood counts but has worked well for me so far ( touch wood) my TMS have fallen from 191 to 21 and scan results in jan were good only showed one tumour in liver ,which had halved in size and the rest in liver and chest resolved,still in bones but Denosumab is working well.Hope all you ladies are doing ok
TKe care all
Kaye xxxx
Member

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

Bumping up for Mrs Brahms xx
Member

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

Hello Cap gang, welcome to the newbies, but sorry you had to join us.  I had an Onc appointment today, and have been given another 6 week break. I was  (I have to admit) moaning about having to do the Fragmin injections. The Onc (a lovely lady helping out my regular Onc as his Registrar was off sick) was very sympathetic, and, as my tumour markers have gone down again (from 30 to 22), they decided I could have a break from the Cap and so go onto another form of blood thinner. The Onc is going to write to my GP, so until she gets that letter, I'm still on the Fragmin. Hopefully, soon though, my poor stomach will get a rest from the bruises and lumps! Anyway, hope everyone else is managing ok at the moment. Hugs to all, Barton.x

Member

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

Hi glo,

I have been on Cap for 4weeks now and s/e are ok apart from sickness which I am taking cyclzine and another at night which are doing the trick.
I have just, this morning, got a sore foot on the heal. Quite tender.

Lot of love
Liz xxx
Glo
Member

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

Well just started this drug on Monday! Ploughing my way through the 84 pages on this thread! Some really positive stories so fingers crossed it works for me as total fail and progression on e/e combo!
Day 3 today so really early days!!!! Lung and liver mets.
Glo x
Member

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

Ladies, my experience, I was on Capecitabine, no breaks, was too concerned Cap might not kick in again, for just over 4 and a half years. After Cap I have Doxorubicin, which worked well on the bc but a year later I suddenly developed serious heart failure due to chemo damage. This has effected my quality of life and my treatments ever since. But without the chemo I wouldn't still be here, I'm not moaning. :-)
My late friend, a poster here, marilf, had nearly nine years of Cap with many breaks in between. In hindsight, a wonderful thing, I think I should have taken breaks. Good Luck to you all.x
Member

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

Hi Macie. I have been on capecitabine for just over 3years. I have never had a long break off it....But have had up to a cycle off....(4weeks if you include the normal week off. Currently I am taking it for 2cycles and then having an extra week off......and after 3 lots of cycles like this taking 2 or3 weeks off....mainly to fit in with hols etc...usually my markers fall during the time I'm off...... My hands never return completely to normal but get much better and my feet recover as well....good luck with whatever you decide.xx

Member

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

Hello Macie, so sorry you are having problems. I am in awe of you doing Cap for a year without a break! I could not have done more than the 7 cycles I did before the break - I was in an awful state! Dreadful breatlessness (I couldn't get to the back of a Tesco Metro in town without stopping 3 times for a rest, and burst into tears in said Tescos (so embarrassing!), and the same day burst into tears in the dentists. My Onc suggested the break after I told him about this, but I had been going to ask him anyway (although would never have suggested 6 weeks on my own). I had read a lot on the Internet that said breaks (and dose reductions) are fine, that it is the drip, drip feed of the tablets that does the good. It took several weeks, in fact, before I felt the benefit of the break,but I had no ill effects from the break. Whether I was just lucky or the Cap continued to do it's work during the break, I don't know. Please ask your Onc for a break. He will surely tell you if he thinks it inappropriate for you, but I am more than sure that you deserve one! Hugs, Barton.x.  Ps please feel free to ask if you have any further questions.

Member

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

Hi Barton
Thank you for answering my post on the bone mets thread that was a long time you were off capecitabine did you feel any bad effects being off so long or did you think it was all ok it certainly sounds like it did you good but i just worry that I shouldn't be doing this while it is working. I feel I desperately need time of after a year on it I am exhausted to the point I can hardly get up the stairs, hands and feet are bad, mouth very sore can't eat very well so losing weight.sorry for moaning but I am pleased for you that reduced dose seems to be working better.
Love Macie x x x
Member

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

Hello Liz, congratulations on finishing your first cycle - it's always daunting taking that first lot of tablets, isn't it?  Sorry about the bloating feeling - I haven't suffered from that (fortunately) so can't offer any advice I'm afraid.  The only thing I can think of is, are you drinking enough water with the tablets (or too much!)?  Sorry you are having to put up with that, though.  Hugs, Barton.x

Member

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

Hi ladies,

Just finished my first cycle and it has been ok.
Creaming my hands and feet morning and night in preparation of the dreaded!!

The only side effect I have had is that when I have taken the tablets at night I feel really bloated and painfull in my tummy like I have eaten loads and loads of food. I have a small meal as it is.
Anyone felt like this?

Love to all

Liz xx

Member

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

Hello Liz, sorry you have had to join us, but glad to have you with us (if you can make sense of that!). Hope Cap works well and for a long time for you. Hugs to you, and all the rest ofvthe Cap gang. Barton.x

Member

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

Thanks for the reply Nicky .

Hope your doing ok.

All the best to you
Liz x
Community Champion

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

Hi Liz
Sorry to hear taxol hasn't helped you but I hope you do get good results from Cape. I must admit I didn't get great results from Docetaxel (Taxotere) whereas before that I had always responded well to any chemo I had including FEC in 2008 and Cape from Feb 2013 to Aug 2014. Cape worked well for me for nearly 18 months even though I should have also been on Herceptin at this point as my receptor status had changed. It kept my bone mets stable and shrunk my liver mets until a tiny new met showed up on a CT scan which is why I then changed to a new chemo regime which included Herceptin.
Hope your markers start coming down soon - and your stress levels.
Take care
Nicky x
Member

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

Hi ladies,

Just back from consultant and I have had no luck with taxol so she is changing me to this drug.

Feeling pretty stressed at the mo as my makers are really high!!!! Anxious about starting a new drug too.

Love yo all

Liz xx
Member

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

Hello there desi2

just saw your  thread on vomiting after taking Cap. i was on it for a short while (3 cycles) didin't work for me BUT I was also vomiting and the Onc said to dissolve the cap in warm  water - check with your doctor but i am sure that is what you can do if yo keep on throwing up 

Member

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

Thank you Sheila and Helen for your good wishes. I'm very cross that Cap has stopped working for you, Helen, but I'm hoping that Erubilin (sp?) Will do it for you. Sorry to hear that you will probably lose your hair, though. Still, if it works, that can be put up with (hard, I know).

Hope the rest of the Cap gang is doing ok, with few and mild se's. Barton.x