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!!
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!
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.
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
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
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
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
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.
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.
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
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
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
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
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
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
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..
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
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
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