Xeloda / Capecitabine - Your Top Tips, please?

[Cookie17]

Hi Helen, I am new to the site and I so agree with what you said. Didn't realise quite how much is on this site and how you can help others too with one's own experiences. I have breast cancer with secondary of the bones and liver. As you say it is a jugging act of poisoning us but not too much, just sufficient to have effect on the tumours. Cookie17 xx

[belinda]

Glad the link was helpful Budgie. Hope you get some answers and help with the breathing problems soon.
Lots of patients change their oncologists, good luck with whatever you decide is best for you. Think we have all been on that roundabout looking for the exit. Take Care. X

[Barton]

Hello, budgie, I'm afraid I had terrible breathlessness on the Cap, and, doing some research, found that the age group I fall in (45-60-ish) is particularly prone to it as a side effect. Apparently, it's supposed to fall off after 6 months or so, but my Onc gave me a break from the Cap in order to recover. I am currently on an extended break, and am on Exemestane at least until I see Onc again on 20th Aug. I believe it is quite common to be given chemo breaks from the Cap, but that, as long as it is working, you can go back onto it. Please discuss this with your Onc, because, as Glo has said, it could be due to something else. It's always best to check. Good luck. Hugs, Barton.x

[Glo]

I got very breathless on Cape but after a chest X-ray they found pleural effusion, which was drained and solved the problem. Might be worth asking for an xray

[Budgie]

Thanks Belinda - your link has proven very useful.

I saw the one last week and asked if cap doesn't work what else is available and he replied that there are plenty of options available to me. I cannot tell you how much relief I felt. I had spent the last 8 weeks lying awake at night thinking the worst and if the cap didn't work, then the outlook was horrendous. I was very angry after the apt!!! Even more so as I just seem to be getting more and more breathless in the last week or so.

Does anyone know if the breathlessness increasing is a side affect of the cap? I'm fearful of contacting the one unit as I spent 24 hours in last week as they contacted me to say there was an issue with a lack of calcium in my bloods. It was a total farce, I couldn't have written a comedy sketch any better really. Three doctors, none of which were talking to each other, three lots of bloods, two clear, one not only to discover one doctor had read the machine wrong 😫😫😫. So having had two drips of calcium, at 4.30am it became clear that I really didn't need to be there.

I am losing all my confidence in my onc and the other oncology doctors on the ward. The nursing staff are just amazing and were as frustrated as me.

Don't know what to do for the best really. Put up with the breathlessness until my next appointment. I still have a nebuliser, so I can go back onto that. Ask to change oncologist, or carry on with the one I have? Just scrambled egg for brains and feel like I'm on a roundabout and don't know which exit to take????

Sorry for the rant and the winge. I am usually one of the mos postitive people you could wish for, but it's all getting me down right now.

Thanks for your help with the link Belinda, and thank you all for your very kind and supportive words xxxxxxx

[belinda]

Just changing the thread title back to the original.

[nicky08]

Bumping up

[belinda]

Hi again Budgie, here's the list of chemotherapies from the Macmillan site.
http://www.macmillan.org.uk/information-and-support/breast-cancer-secondary/treating/chemotherapy/dr...
I would think some of these in the link are applicable for you. Best Wishes. X

[Sarn123]

Hi budgie, I too did well on Cape for 2 years at the high dose and really suffered with hand and feet I also suffered with the really sore mouth,onc want.ed to cut dose but I thought the results were so good I asked to stay on high dose if you feel you can handle SE than just tell them that my onc always listens to me which is great and we work through doses ect... Together. I was given a good tip for sore mouth frozen pineapple on cocktail sticks or just eating pineapple there's something in it that works. It sounds like it would be painful but it was soothing frozen plus use kids toothbrush and paste it's a lot kinder hope this has helped and good luck with the treatment, many people have done really well on it for many years, which is good to hear when you start something new love sarn xxxxx

[Budgie]

Hi Belinda 

thank you for coming back to me.  The info you have given me is really encouraging - thank you.  The onc says its the only treatment available I guess because I have had FEC and Docetaxol in the past and I believe the hormone receptor may have changed?  

I am seeing him again tomorrow - so I will question it with him again - thank you.

Thanks again and I wish you well XXXX

[Barton]

Hello, Budgie - sorry you have had to return to the forum! 

I was on Cap for 7 cycles last year, and another 3 this year - with an 8 week break inbetween the two lots.  I was allowed the break because a. Cap was working quite well for me, but mainly b. because I became progressively more breathless and tired as the cycles went on (not got lung mets).  I was also just beginning to get a painful mouth, but not to the extent you seem to be suffering, so I'm fraid I can't help with advice for that.  I had been on 4000mg per day.  I had recovered quite a lot after the break, so went back on the Cap for another 3 cycles, but at a lower dose of 3600mg per day.  The breathlessness and tiredness were beginning to reappear, so was given another break, which, as my response had been so good, has continued.  I have now been off Cap for about 14 or 15 weeks (sorry, lost count!), and as my blood test results for my tumour markers were still ok on my last visit, my Onc has given me Exemestane (hormone therapy) tablets for 2 months, which gives me another few weeks (at least) off Cap - returning to Onc on 20th August to check results.

Sorry for rambling, but what I think I am trying to say is, speak to your Onc.  They can reduce the dose if you are struggling.  I did some internet research (yes, I know it's not generally a good idea!) and found a few medical reports saying that a lower dose can be just as effective, and that it's the continuous drip, drip onslaught of the Cap that does the trick.  I understand your reluctance to reduce the dose, though.  It all "messes with your head" as the Americans say!  Speak to your Onc. - he/she will soon tell you if they think it a good/bad idea, or they might have some stronger mouth stuff. 

Hope this helps.  Vent on here if you need to!

Hugs and best wishes, Barton.x

[belinda]

Hi, sorry you have to join us here. Capecitabine can still be effective at a low dose. A late friend of mine was on Capecitabine for eight plus years. During those years she was on a pretty low dose, sure it was much less than 3600 at times. And she had regular breaks, the chemo was still effective. Capecitabine worked for around four and a half years for me. Hope you get a very long time with it. Sorry to hear about your sore mouth, I used Diff mouth wash but didn't have major problems. I did wonder why your Onc has said this is your only chemo, have you tried, been on many others? X

[Budgie]

Good morning all.  I am a returner to BCC forums in that I was diagnosed with IBC 10 years ago - discharged 2 years ago only to discover a recent cough and breathlessness has resulted in mets in both lungs.  Waiting for results on bones, but so far not showing in liver.

I have started cape and have just finished round two.  After reading all your posts on here I have kitted myself out with udderly and so far my hands and feet are ok - I am permanently living in flip flops to keep them as cool as possible (onc told me to do that).  

However, I have a very sensitive mouth. It feels like my tongue has been burnt with a hot drink and the roof of my mouth is really tender.  I am using Difflam mouthwash as often as I can, which relieves it for a short time.

After round one my onc was going to increase my cape dose (currently on 3600 per day), but as my mouth was tender, he wouldn't increase and left it at the same.  I am concerned he might reduce it tomorrow at my apt. This worries me as I am told that cape is the only treatment that is available for me and we are hoping that I can stay on it for the long term.  I need to be around for a long time yet as I have two young children that I want to be here for.  

Reading all your posts on here fills me with hope and I feel that if I can contribute to the forum in any way and help others, then it might be of some help to someone else.  

I wish you all the best ladies (and gents).  If anyone has any receommendations for my mouth (apart from keeping it quiet 🙂 ), I would be very grateful.

Huge thanks

FI

[belinda]

Hi juneybird, hope the chemo works well for you. X

[juneybird]

On cycle 3 now and sided effects not too bad.Dose was reduced after first cyclt to 75%. Hands and feet a bit of a problem. My top tip is lambswool insoles, boots etc. Someone suggested to me and I found it really help. And they are meant to be cool in the hot and warm in the cold. First post. Just to say Good Luck everyone

[Barton]

Hello Abi. I'm glad to hear you are doing OK so far. Good luck! May the se's be few or mild! Hugs, Barton.x

[abilucy]

Hi, thanks again for responses. Been on it now 4 days and no side effects except dry eyes, bought optrex eye revive this morning (£15, how do they make a profit!?), will be asking at hospital for eye drops next time l'm there.

Abi x

[nicky08]

Hi Pam, good to see that Cape is still doing such a great job for you, long may it continue.
I was on Cape for 18 months and like you found a high urea content cream the best at night.
I used Boots own which is 25% like the flexitol one but didn't know you could get it on prescription - a good tip for everyone who needs to buy it. Udderly is about 10% urea and you should make sure that's the one that you order as they do another one without urea. I did make sure I put hand cream on at night and during the day when I could but luckily didn't suffer much with cracked hands, just the odd split in the finger which was very difficult to heal. I used to buy faster healing plasters from Wilko which were very good and, get a prescription for Vit B6 from your oncology unit or GP which is meant to help. All in all though I tolerated Cape pretty well after an initial getting used to and adjustment of my dose down to 80% rather than sticking at 100% . Good luck.
Nicky x

[pam01]

Hi.....I think we all use what we think best......I have been on capecitabine over 3 years.....I sometimes use underly cream during the day....sometimes use other creams which are a bit greasy but which are absorbed quickly....current favourite contains argan oil.....At night I use a cream with a high urea content which is much thicker...use flexitol heel balm on prescription from GP.

Also use memory foam sketchers trainers and Mbt type shoes. Also time additional weeks off medication around holidays when I know will be doing more walking.....good Luck!!

[abilucy]

Oh thank you ladies, Udderly cream and night socks it is!

x

[Orse1970]

Hi

When I was on Cape I used udderly cream, totally smothered my feet and hands in the cream and then put cotton gloves and cotton socks on them over night... My feet and hands were the softest they have ever been..

Udderly cream is expensive on Amazon, but your doc or oncologist will prescribe this for you at the Hosp/surgery - so pls don't waste your money....
C xx

[Macie40]

Hi Abilucy I have been on Cape for over a year now and have tried every cream on the market and have to agree with the other ladies udderly cream is by far the best (for me anyway ) and I also get it from Amazon .
I wish you all the best for your start on Capecitabine Love Macie x x

[belinda]

I used Udderly and Eucerin, from Boots. If anyone gets cracked heels I recommend paying more for Silver plasters, quicker healing. Good Luck Abi. Hope Cap works well for you. X

[bertie1]

Hi abilucy I'm on my 10 th cycle of Cape and have suffered badly with sore hands and feet and after trying lots of creams have found Udderly smooth to be the best ,you can get it off amazon .good luck with your treatment
Kaye x

[abilucy]

Hi, I'm sure this has been answered loads of times so sorry to be a pest but couldnt find a recent post. Best cream for hands and feet when on Cape? Due to start it in a couple of weeks after discovering that my current chemo isnt really working and want to get stocks in. I'm triple neg, anybody had good results?

Abi

[belinda]

Bumping up for jeannie.

[Barton]

Sorry Glo. Not suffered from that so I'm afraid I can't help. If it's worrying you, please ring your chemo team. Hope it gets better soon. Hugs. Barton.x

[Glo]

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

[Barton]

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]

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

[Barton]

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]

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

[Orse1970]

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]

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

[nicky08]

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

[Barton]

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]

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!!

[Barton]

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]

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?

[Barton]

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

[2catlady]

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

[Barton]

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

[Barton]

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! 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

[2catlady]

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

[Tinkerbelle]

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]

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

[belinda]

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

[Barton]

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

[Miss_Brahms]

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