Xeloda / Capecitabine - Your Top Tips, please?

[2catlady]

Bumping up for Bertie1

[2catlady]

Oh,Julie,50-60% wow! That's fab,I hope it kicks mine like that. I'm taking cyclizine so hopefully it will settle.
Huge hugs,Helen xxxxxx

[madge1]

Hi Katherine, Helen and everyone else on Cape!!!! I am on my week off of my 9th cycle, and also have the side effects of nausea, stomach cramps, diarrhoea on and off, mouth tingling, fatigue, fingers feeling scalded and also my feet!!!! I've been given medication for all the side effects, but was also given as an extra for nausea Ondansteron which as I found out gives you constipation!!!! So it is more than likely that which is causing it!! Do ask for another anti-emetic such as cyclizine. My dose started at the maximum of 2500mg twice a day, then reduced by 20% to 2000mg BD after my 4th cycle as bad side effects. I hope this does help and after my 4th cycle I had an u/s scan and ct scan and the tumour and lymph nodes had reduced by 50-60%!!!! Good luck to everyone and keep taking the pills !!!!!! Love Julie xxx

[2catlady]

Hi,Katherine,I'm very sickly and have just started my first cycle. But I had a packet of anti sickness pills given to me when I picked up my pills. Ring your BCN or GP for some.
Huge hugs,Helen xxx

[pam01]

Katherine, bowel disturbance and vomiting are a very common side effect of capecitabine....so common that most people are offerred medication to help with this during the first cycle and to continue if its an issue. Discuss with your BCN... maybe if the constipation could be eased that would ease vomiting....or vice versa. If it started as the new drug was started its most likely the cause!!

[Katherine2701]

Hi everyone, I wonder if anyone else has had sickness with their Cape? I'm on my first cycle, day 11 and although I haven't had diarrhoea I have had constipation and vomiting every day. I'm on Ondansetron for sickness but it isn't doing anything. I'm frightened it means my liver is giving up! I'm so hoping someone out there can give me a bit of hope!

[Barton]

Hello, Helen,

Many thanks for your good wishes. 

I don't know if the "side effects on the week off" thing is definite - it's just what my Onc.implied.  As I say, so far I have been lucky and only had the tiredness & occasional diarrhoea, but both seem to apply at any time (ie.not just my week off). 

Regarding doses - my Onc.said I was on a low dose, but I don't know if he intends to increase my dose if I tolerate this one well (which I seem to be at the moment, but I know all effects are cumulative) or if he meant to keep me on this current dose for the whole 6 cycles.  I don't know if he will alter the dose at all when he sees the results of the CT Scan.  Keeping all fingers crossed that the Cap is kicking C's butt (I like the way you think!).  Hope it's ckicking everyone elses C's butts, too!

Best wishes,

Fran.

xxx

[2catlady]

Hi,fran. Oh I didn't know SE come on week off! That was not mentioned. So glad you are coping on cap I'm on 4600mg a day split into two doses. Two weeks on one week off.
Good luck on the 9th and good luck with results. The cap will have kicked the C in the butt for you.
Huge hugs,Helen xxx

[Barton]

Ok, Killerk, I'm so sorry to hear of your nasty side-effects!  I do hope the lower dose is working for you.  It's good to know your tumour markers are down (have not asked about mine - something to remember next appointment) and that the lump under your arm has shrunk.  Long may it continue!

I'm almost ashamed to say that I have had virtually none - some tiredness, a couple of episodes of diarrhoea, but that is about it.  I am on the rest week of my second cycle, and am still ok so far.  My Onc.did seem to think the side effects are more likely to kick in when on the rest week.  I am on the same dose as originally (2000mg twice daily, two weeks on then 1 week off), but I am beginning to worry that my dose isn't high enough!  When I last saw the Onc.he said I was on a fairly low dose (for my height and weight, I think he meant) and to see how that went.  I have had an appointment through for another CT Scan on 9th September, and have an appointment with the Onc.on 18th - presumably to find out if the Cape.is working.  I'm not worried at the moment, but by the time the 18th comes round I will be a nervouse wreck!  What if it hasn't had any effect? 

Best wishes to you, and all on Capecitabine.

Fran.xxx

[2catlady]

Hi,Katherine I've just started cap on Friday 1st cycle,so have only had it for 2 1/2 days. Touch wood nothing so far regarding side effects. Very tired but that's the rads which are knocking me for six.
I'm glad your second cycle seems to be going okay.your first sounded awful.
Huge hugs and good luck,Helen xxxxxx

[Bevlaar]

Hi Katherine.  Not good about the se's. It brings you down doesn't it? Luckily ive had nothing to report with my Cape, (so far!) apart from 2 episodes diarrhoea where it came on really suddenly!

Started on 1 july so just finishing my 3rd cycle tomorrow then scan on Wednesday,  results following Wednesday. 

Everyone seems to be getting really good results so lets hope we'll be the same eh?

The day after scan I'm off to tenby and back day before results so hopefully will be a nice distraction.....not sure about the weather though!!

Good luck with your treatment love xx

And a good morning to all our lovely ladies xxxx

Bev xxxx

[killerk]

Hello Barton, I hope your first cycle went ok. Mine was a bit rough. Had horrendous diarhoea and stomach cramps. I was quite ill at the end of my first cycle. I'm now on a lower dose 1650mg twice daily. It did bring my tumour markers down and lump under my arm has shrunk so it was worth it! Anyway I hope the SE's aren't too bad for you! Katherine xxx

[killerk]

Hi Helen. Apologies for delay, I've only just logged back in! Cycle 1 was a bit of a nightmare......diarhoea, stomach cramps and didn't eat for 4 days. Just started cycle 2, now on lower dose so fingers crossed the SE's aren't so bad. Look forward to getting to know you all. Katherine xxx

[DaniGirl]

Hi

I'm not TNBC but when primary came back in other breast and secondary in lung I was taken off Tamoxifen. Diagnosis was the same as first primary IDC grade 2 er+ 6/8 although new primary showed some pr+. Only taking Capecitabine, no weight gain, no major side effects, possibly dry hands but nothing significant. On my 5th cycle and taking 4000mg per day.

Been told initially would be on Cape for 6 months then at my last meeting Onc said I would be on it for as long as it works...

Hope all you ladies are feeling well. Have a great weekend.

Love and light all around you.

Dani XX

[Stillhere]

Hallo, I'm such a wimp that I ask very little at my appointments but your knowledge of your conditions makes me think that I really should! I know that I'm ER + but not a score. I've been on Cape for a year and what I wanted to say was that I've always been on 3600mg per day but I've gone from 2 weeks on, 1 off to 1 week on and 1 week off. I'm a Marsden px so I feel confident that this is ok! My side effects are minimal, dry skin, weight gain, some nausea controlled with metacloprimide, tiredness but all doable.
I've been on 2 aramotase inhibitors, but neither was effective for me for very long. Hope that this is some help to Cape ladies!

[Bevlaar]

I'm definitely going to ask about that score, if it's 3  then surely theres some positivity albeit weakly, so I would have thought a hormone would be of some benefit. 

What he said was that 5 years ago I was a 4 and put on tamoxifen but as I now have secondary bc the tamoxifen stopped working at some point.

So confusing xxxx

[Desi-2]

Thanks for your reply Bev. I don't know yet when or what il be having I see my onc on 12th August. Just trying to gather info before I see him so I can ask why I can't have this if he says no. My er score was 3/8 to but if their saying it's now negative I'm assuming it's dropped from this last biopsy. Xx

[Bevlaar]

Hi desi.

Dont think its only for TNBC, although my onc said he didnt think I would benefit from hormone therapy as my ER positivity score was only 3/8. My last primary in 2009 was er weakly positive and 4/8.
Nit confused over that because I read that 0-2 was negative. 3-8 was positive
Must admit I'd feel better if I could go on something else in between chemo.
But Cape is really doable. I'm back in work as I only do 2 days a week and no s/e's to speak of except 2 episodes of diarrhoea in last 4 wks.
When are you starting and how many cycles?
Big hugs...bev xxxx

[Desi-2]

Could I ask ladies are you on this form of chemo because hormone therapy is not used ie are you TN just found out I am and wondering if this could keep me going for a while you seem to still have quality of life so maybe it's not as bad as I fear!
Best wishes to all xx

[donns58]

Hi Bev
Not sure what's going to happen yet. Once they have scan results they will decide. I must admit IV chemo is a bit concerning!! I'm trying to stay open minded but as you know it's s worry!!
Hope all goes well for you but keep creaming your feet ...
Keep in touch
Donna

[Bevlaar]

Thats great news donns and thanks for replying. Im also taking 1650mg twice a day. I seem to be ok after the morning dose, full of energy...I work just 2 days a week at the mo instead of my normal 3. But after the evening dose I seem to get a bit achey and tired and usually find myself going to bed to stretch out and read around 8pm!
No other side effects yet.
Will they give you another oral one now? I would hate to go back to the iv of 9 years ago!
Bev xxxx

[donns58]

Hi Bev

I just saw your note and felt that I had to drop you a note. I have been taking cap for the last 3 and a half years. I take it 2 weeks on and one off and a dose of 1650mg twice a day. Apart from the dry skin on my feet it has been quite bearable and has worked well for me. I do sometimes feel tired but when I feel like that I make sure I rest. However I do still work full time as well and have done through the whole treatment.

If I remember rightly when I first started taking it I made sure I took more rest but as time has gone on and I have got used to the drug it has been a bit easier. I've just got back from the hospital and my markers just started to move up so will need to change treatment.

Is there anyone out there who has taken Afinitur/Aromasin or known as Everolimus/Exemestone or something like that?

Good luck Bev and I hope it works for you.

xx

[Bevlaar]

Hi Sher...good luck with the weight loss. Sounds like a good diet to be on. My weight fluctuates. Im 3lb less this week! I think its because some days I eat very little as I have no appetite then other days I can feel ravenous. But j stick to a food plan rich in veg and fruit, salad, fish and eggs. Lots of fibre too and avoiding processed foods where I can.
With the Cape, have you been on it constantly for 7 mths or have you had breaks?
Are they keeping you on it because they havent achieved the desired results yet? I was wondering what they have planned for me after my 3rd cycle and scan on 27 Aug.
Love bev xxx

[sher]

Hi

I have secondary bones and lung mets.  I have been on cap for 7 months now.  No drastic side effects  except what is expected such as heel and hand skin being dry.

You mentioned your weight.  I was finding my weight pretty static.  I was trying to eat a low cal healthy diet but it wouldn't move.  As I am in the 14 st bracket I thought it was a strain on my spine so wanted to lose weight.  This week I have switched my way of eating to a low GL diet and got a book off Amazon called 'The GL Diet Made Easy' by Nigel Denby.  I have lost 2lb in the last 5 days.  I don't suppose this will be a constant loss but if I could lose 1lb a week I would be happy.  Good luck. 

[Bevlaar]

Thanks pam thats really helpful advice. It may well have been the UTI because yesterday I was very down and tearful and I know that can happen with water infections.
Yes I went to my first meeting in bcc offices on fri 18th. Only 4 of us turned up and it benefitted me a lot. The other ladies had bone mets so I was the only one with lung. Although Nicola said they usually have ladies with lung attending too. Looking forward to the next one!
Love bev xxxx

[pam01]

Hi Bev....My experience of fatigue with capecitabine is that fatigue  creeps up gradually as the number of cycles i have had increases and, to begin with at least, improves in the week off, and during treatment breaks. certainly mention it to your onc but this cycle it would be difficult to be certain its the capecitabine  as it could so easily be the UTI.

I dont think anyone knows the answer to the question.... is it better to reduce dose or keep dose constant and have occassional breaks..... It may partly depend on what side effects you get and how severe they are. There are certainly ladies on here who have had dose reductions and capecitabine has still been effective. I have chosen (in conjunction with my onc) to keep dose the same but to have occassional breaks.

To answer your question posted on the meet ups thread. I think the ladies who regularly met in Cardiff for coffee have more or less transferred to the BCC monthly secondary meeting.....last time I was on holiday but am planning on going more regularly. BCC have just changed the day to friday and some of the ladies who used to go are unable to attend at the moment because it clashes with their chemo day.(but friday suits me better!)

Hope you are feeling better today. Best wishes. Pamx

[Bevlaar]

Hi ladies. Ive noticed that on a couple of occasions on my 1st cycle of Cape and again tonight on my 2nd cycle, I've experienced a feeling of being weak, achey joints, tiredness and a general feeling of being unwell. This usually only lasts a day but I have had to go to bed by 8pm.

Has anyone experienced this....wondered if I should tell Onc when I next see him on 13th aug. He's only planned 3 cycles for me at the moment...do you think he'll reduce the dose? If so what are the implications?

To top it off I've had a water infection since Saturday and saw the out of hours gp on Sunday who dipped my sample and said it was off the scale! H

ad 3 days trimethoprin so feeling really down at the moment...especially when this "unwell" feeling returned again today. Would be glad of some advice .

love bev xxxx

[Bevlaar]

Yes I was on GSF injections from my 3rd fec 9 years ago. They were awful. Nothing like that with Cape. Hopefully the side effects will be minimal as they are now xxx

[nicky08]

Hi Katherine/killerk
I also had to have the GSF (?) stimulation injections when I was on FEC 6 years ago, from about cycle 3 to the end as I was always so low with my wbc/neuts, although I was never neutropenic. I have been on Capecitabine since Feb last year and have no problems at all with these counts so I hope you will also. Because the dosage is sort of trickling through for 2 weeks rather than one big hit on day one it is a bit kinder on the blood values and also your body.
Nicky x

[nicky08]

Hi ladies
I've not been posting for a while but have been reading all the latest posts and thought it about time I did add something.
I found on Capecitabine, certainly at the beginning, that every cycle seems to be different and throw up some extra side effect I hadn't had the previous cycle. However after a while my body seemed to cope better with it and other than very dry and cracked heels and some peeling of my fingertips I haven't suffered too much. I hope everyone who has started on it recently will find that they also settle down but it can be unnerving to suddenly have to dash to the loo when you had no problems whatsoever last time! As to my appetite I don't think its got more and I don't think I eat more but I did put back on the weight I lost last year when I found out I had got further spread. Again, maybe over time you will find the same?
Hope everyone on this great drug is doing well and coping with any side effects it does throw at you and you get good results from it.
Nicky. X

[madge1]

Hi everyone,
I too have put on weight since being on Cape!!!!! My appetite has increased and I don't like it!!!! Lost weight when first diagnosed just like Bev, but now putting it on every week and I hate getting on the scales when I have my 3wkly review with oncologist!!!!! They say don't worry, you will lose it sometime!!! I want to lose it now but I have to be in the right frame of mind to diet and I'm not there yet!!!!! Also have a cold and cough this week so feeling sorry for myself!!!!! Just hope I'm feeling better next week as we are off to Belgium for 6 days!!! With me, each cycle is different, but the 4th and 7th were the worse!!!
Hope you all have a lovely weekend.
Love
Julie x

[Bevlaar]

Ahaa...was wondering why the weight was creeping on! The first 4 weeks after dx I dropped 12lb and weighed 10st 2!  Wasnt eating at all or sleeping. Had no appetite. Then a week after thar went to greece for 2 weeks and gradually started eating again...lovely greek food too yummy to resist!  But even then when I got home had only put on 4 or 5lb and weighed 10st 6. This morning when i weighed, despite only eating 1 light meal a day like salad or pasta,  I'm now 10st 10!

Looks like i'll be staying on the salads!

stillhere...youve really been through it over the years...but you seem to have done well...long may it continue now you're in our elite group!

Love bev xxxx

[Barton]

Hello, Stillhere and Bev,

  I am also experiencing an increase in appetite!  It's driving me nuts.  I thought it was just my imagination that it was linked to the Cap., but if you are experiencing it too it looks like there must be a link.  I  have been trying to resist but I have a feeling I have already put on more weight.  I was hoping being on Cap. would mean I would lose weight!  Barton

[2catlady]

Hi,still here,welcome but sorry you ate joining us. You will get lots of support,advice and hugs on here. The lovely ladies are wonderful on here. We all tend to hang out on bone mets & lung mets as they are the longest going and easiest to keep track of.
Huge hugs coming your way,Helen xxxxxx

[June_BCC]

Hello Stillhere

Welcome to the forums. 

As well as the support you will receive on the forums we also have a free helpline where you can talk things through with a member of staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

With best wishes

June, moderator

[Stillhere]

Hallo ladies! Another newbie here! Not a newbie to breast cancer though, it's been an unwelcome pest for 20 years. I've had loads of treatment- mastectomy, reconstruction, chemo x2, radiox2 further surgery for recurrences x4 and for the last year, inoperable regional recurrence in hilar lymph node so think I'm now in the secondaries camp.
I'm almost 1 year in to cape chemo which for me has been fantastic and so much more doable than the IV chemo that I had to stop in 2010 after 2 treatments because I felt so ill.
I'm replying to Bev's thread because I feel really hungry on my tablet week and have put on some unwelcome weight. Anyone else? I take metaclop

[Bevlaar]

Hi ladies...i was dx early May with lung mets and have just started my 2nd cycle of Cape this week. No side effects to speak of except diarrhoea (sorry if youre eating! ) this morning and once on my first cycle. But took 2 of the loperamide they gave me and it passed. Im on 1650mg twice a day.
Hope you find it manageable. Yes,drinking plenty oc water is good especially in this heat! I also drink coffee (decaf only) and tea. Also occasional fruit teas.
Not to mention the odd glass of pear cider now and then in the garden 😀
Love and hugs. ..bev xxxx

[2catlady]

Hi,Katherine,welcome but sorry you have had to join us.
We are a very friendly bunch who are only too glad to help.
The ladies who are on cape. will be along soon to offer you any advice.
Huge hugs,Helen xxxxx

[Barton]

Hello, Killerk, 

I have just joined the Secondary ladies, and I have just started Capecitabine (just completed my first week) and I am on 2000mg twice daily.  So far (I am keeping my fingers crossed!) I have had no side effects.  I was told to drink plenty of water, and I have been but have also been varying it with coffee.  I believe several other ladies are also on 2000mg twice daily. Good luck with your regime.  Barton

[June_BCC]

Hello Killerk

Whilst waiting for support and shared experiences from your fellow users maybe you would like to call our free helpline on 0808 800 6000 and talk to one of our staff who are there to offer support and practical information.  Lines are open weekdays 9-5 and Sat 10-2..

Best wishes

June, moderator

[killerk]

Hi ladies, I'm new to this forum. I've just started Cap today and would be good if I can pick your brains! I was on Taxol/Gem but only had two treatments as I was neutropenic both times. For some reason my onc is really reluctant to put me on G-CSF - he said it can impact long term immunity and he said it's better if we save it?! Had G-CSF previously on FEC two years ago. Also I'm a bit worried about the dose  - he's put me on 2000 mg x twice daily.....does this sound right? I'm also worried about becoming neutropenic again and wondered if this has happened to any of you? Thanks Katherine 

[2catlady]

Hi,bev,yes,your daughter could be right. The heat is draining at the moment and disturbed sleep doesn't help.
I hope you feel much better today.
Huge hugs,Helen xxxxxx

[Bevlaar]

Yes helen...always take it around 10-15 mins after food. Felt fine after yesterdays dose. The hosp said they dont think it was the cape but to keep an eye on it.
My daughter thinks it was because I fell asleep after coming home from work with the cool fan blowing on me. That combined with the heat and a long day at work...over fatigued I expect!
Enjoy your weekend. Weather glorious again! But am keeping in the shade
Love bev xxxx

[2catlady]

Hi,bev,do you take it after food. I read that if you take your doses within half an hour of eating it helps!?
Glad you are feeling a little better,huge hugs,Helen xxxxxx

[Bevlaar]

Thanks for replying julie and helen. ive just woken up and feel more myself but have to take the morning dose yet! Hope I'm not going to feel like this after every dose! The first cycle was fine.

If it happens again today should I ring the hospital ? I dont want them to stop it though.

love & hugs..bev xxx

[2catlady]

Hi,bev & Julie ,so sorry you are both having a rough time on Cape. Fingers crossed you can get a dose you can both tolerate. It's supposed to be a kind chemo so hopefully you can both stay on it for years.
Stay strong and hang in there,huge hugs,Helen xxxxxxxx

[madge1]

Hi Bev,
Sorry to hear you are not feeling too good, I have found that each cycle is different!!! Started 8th cycle on Monday and now feel like I'm getting a cold and sore throat!!!! Had extreme fatigue on cycle 7, which I did just rest and sleep!!!!!!! But that made me feel bad as I felt I was wasting my days !!!! I'm off sick and being medically retired from the NHS, last day of 32yrs service is 22/8/14 !!!!. When I was first diagnosed I was put on Letrozole but after 8 wks my symptoms were worse and tumour had grown, so was advised 2nd line of treatment was Capecitabine. I had a 2nd opinion at The Marsden and they said the same! also said I could have IV but the outcome would be the same and to save that for later. I have the denosumab injection (bone strengthening) and tablets for the side effects!!!!! I tend to feel worse at the end of the first week until the middle of my week off!!! Last week it was Wednesday that I felt better and each day I felt better until the Sunday and I felt my normal self, then back on the Cape Monday after oncologist review!!!!! I did say I don't want to keep feeling like this as it was getting me down!! He said he wanted me to keep on same dose and will review in 3 wks, and see how I go!!! Fingers crossed !!!! I hope you feel better tomorrow!!
Love Julie
X

[Bevlaar]

Hi julie...thats a great result! Do you take anything else like hormones? Im worried that there wont be many options available to me if I'm not given something like that.

Ive just taken my 2nd day's dose of Cape on my 2nd cycle and I've had to come to bed! First time I've felt poorly. Flu like symptoms.., joints are aching, legs and arms feel like lead and I just feel weak.  Was ok after this mornings dose, actually went to work for 6 hrs!  Will this be the norm after every evening dose fo you think?

Love bev xxx

[Bevlaar]

Thanks julie....didnt have my marker results but all other bloods were very good he said. Also said he was keeping optimistic that things are working due to the fact my cough has almost gone! I suppose I wont get the full picture until my ct scan on 27 Aug.
My er status was weakly positive 3/8 which he said was nearer negative so hormone therapy prob out of the question.
Love and hugs...bev xxx

[madge1]

Hi everyone,
I've just started my 8th cycle of Cape, didn't feel well on my last cycle, extreme fatigue, nausea, cramps, painful joints even my rib mets, feet and hands have got worse feeling burnt!!! My bloods were ok, so all due to the chemo!!! Onc. Is keeping me on the same dose 2000mg BD and will review in 3 weeks.
Bev, after 3 cycles my tumour and lymph nodes had shrunk by 50-60%!!!!! ( double whammy of primary and secondaries last nov/dec ). Each cycle is different, most cycles have been doable except the 4th and 7th, after the 4th one my dose was reduced from 2500 to 2000mg BD.
I don't post very often, but do read the posts every day!!!!! Good luck to everyone, keep well.
Julie
X