Hi all,
Have you any of you suffered for extreme tiredness whilst taking capecitabine?
Thanks xx
Hi Marie - I had extreme tiredness when I started Capecitabine, to the extent where I was stuck in bed, barely even to open my eyes - and that was just after a couple of days. After about 5 days I had to stop taking it and have some steroids. They got me out of bed but after starting the tablets a couple of days later I was back in bed for 22 hours a day. After a total of 9 days of the tablets I was so ill I had to stop taking them and it took me a couple of months to recover. I felt so ill all that time and could barely walk. I’ve since found out that I didn’t have enough of an enzyme which is necessary to metabolise it (it converts into 5-Fluourouracil in the body, Fluorouracil being the ‘F’ in FEC-T). Aside from the extreme fatigue it made me vomit terribly - I was still vomiting 3 weeks after taking the last tablet. When I had FEC-T I had trouble with vomiting on that as well, so it was maybe the 5-FU that did it.
I would suggest you talk to your oncologist/chemo unit. It may be that your onc would reduce the dose. I wish I’d let my oncology unit know how bad things were sooner as those weeks were the worst of my life.
On the other hand, many people get on very nicely with Capecitabine and find it effective for years.X
Hi downbutnotout
Thank you so much for your reply. I actually go on these forums on behalf on my mum. I try and get lots of information so I can understand what is going on 
my mums on the (6th?) cycle of capecitabine and I’ve noticed she is very tired late afternoon so I just wanted to check it out. Thank you.
Do you mind me asking what your situation is? Sorry I hope you don’t mind xxx
Hi Marie there is a cape thread where there are few of us on this Med which may help with any advice. I am on a reduced dosage one week on and one week off as my platelets and HB are unstable. Started a couple of weeks ago.
Hope your Mum feels better soon and not as tired. Agree with Downbutnotout that she needs to tell Onc.
Thank you. She has a little sit down in the afternoons and always feels much better afterwards so that’s good. She is having levels checked today (to see if her body is ready for next cycle on Thursday) for some reason I feel nervous about this! Mind you, I worry about everything and always feel nervous xx
Just take each day at a time. It always a whirlwind of appointments etc . Big hugs to you both xxx
Hello Marie, sorry your Mum is so tired. I am on Cape, and have been (on and off) for nearly 2 years now. My first cycles, I was tired, but not suffering extreme tiredness, but I did get severe breathlessness after the first few cycles (which was the main reason for my first rest from it after 7 cycles). A few cycles later I had a dose reduction (as racer has had), and was quite a lot better. However, since my last long break - late 2015- I have noticed that I have trouble walking around after lunch. It’s as if my body can’t do 2 things at once (digest food and walk!). I told my Onc this and was told that everyones body has to do this, but because my health is compromised and because of the medication, the effect can be much more pronounced. You said your Mum feels very tired in the afternoon - I wouldn’t be surprised to find she is suffering from the same effect.
As racer has suggested, please join us on the Capecitabine thread on this same board. There is much good advice and sympathy to be found there (not that you will be ignored anywhere else!).
Hugs, and hope your Mum feels better soon.
Barton.x
Hi Marie - it’s lovely that you’re here gaining information to help you mum. I have triple negative breast cancer with metastases to skin and lymph nodes - although my skin has been good since the summer. I’ve had many chemo regimens and they vary tremendously in terms of side effects - ones that I tolerated well other people have struggled with, and vice versa. I’m off treatment at the moment as my bone marrow couldn’t cope any more. I feel okay though, at the moment.
Sounds like you’re getting lots of useful help for you mum from the other ladies.
Wishing you and her all the best.
X
I did, we all react differently.
Xx
Moijan