Capecitabine

Hi,

I just finished 8 cycles of  Capecitabine, taking it twice a day for 14 days, then a 7-day break.  It wasn't as bad as the infused chemo I had (Carboplatin, Paxlitaxel and Pembrolizumab).  I had quite a bit of trouble initially with diarrhoea, but they lowered the dose (and gave me codine to bind in an emergency), and that was resolved. I had less brain fog and less tiredness than the first round of chemo, but there were days that I just sat on the sofa regrouping.  

My biggest side effect was the Hand-Foot Syndrome.  That was pretty bad.  Hands and feet burning, cracked, peeling and painful, toenails lifting. They don't have much for offer for that and suggest regular use of urea cream. and wearing gloves.  It helps but not much.  Be prepared to go through tons of it (like applying 4-5 times a day minimum),  

I found that Diclofenac gel helped a lot with the pain, as did getting ice pack slippers.  Also, pure cotton gloves and socks can help to moisturise but may make the burning worse as your hands and feet get so hot. 

I did lose my fingerprints, which is a pain for using the phone and associated apps, but I am hopeful they will come back (although it has been 5 weeks since my last chemo pills, and they say they usually come back within 2-4 weeks). I am still on antibiotic cream where the toenails got infected.  Bathing toes in diluted white vinegar can help with this too. 

Still -  don't panic - I got through it, and it really wasn't as bad as I had feared. You can do it.xx

Hi CovGirl, 

I was exactly the same. Same staging, same amount of chemo.  The biggest side affects for me were a feeling of being queasy every evening between 5-7 (but it was manageable as I had anti-sickness tablets if needed) and the worst was the fatigue that I’m still getting over now 4 months after finishing it.  I only managed 5.5 months in the end as I was getting progressively rougher, but I’d say it’s very manageable and the team will check in regularly. 

It’s not as bad as it is in your imagination. By biggest upset was that I couldn’t go swimming when I went to centre parcs! 

best wishes

cerysm 

Thank you, that's really helpful x 

Thank you, its good to hear its manageable. I think my brain is just in overdrive! 

And, of course, remember you might get lucky and not even get Hand-Foot syndrome at all! (I never had any problem with feeling sick or queasy, at least!) Good luck! 

Hi CovGirl,

I had an infusion of Oxaliplatin on day one then two weeks of capecitabine twice daily.  
Much like everyone else is saying brain fog, a nausea.  I was bunged up most of the time which played on my mind as I was concerned about the join where they had stitched my colon back together.   I was a relief on the week off when I could go to the toilet easier again .

You’ll manage and when you finish, it will be late summer and the world will look fantastic!  You won’t be incapacitated though.  I had a weekly goal of walking to and from a book shop across fields near me.  In fact, you’re in Cov, have a look.  I’m not suggesting you walk there but it’s a nice distraction. It’s a second hand one.  Astley Book Farm, Google it.  There’s a nice cafe, its not the cheapest but you deserve it!

paul

Yes it's lovely there, great recommendation. Thank you it's good to know your experience x 

I had 4 cycles of Oxaliplatin on day one then two weeks of capecitabine twice a day. I had very few side effects from the capecitabine. The first round gave me slight diarrhoea for a day. Other than that, I sometimes felt a little nauseous but it was easy to control with the prescribed antisickness.

it was no way near as bad as the side effects read! 

Hi so reassuring.  I start March 13th and have read way too much re side effects so am now utterly paranoid! Xx

Hi CovGirl.

Started my Capecitabine 10 days ago. Same as you, mine is 2 weeks on, 1 off for 6 months. So far so good with just a bit of afternoon fatigue which is manageable. 
Easy said but don’t worry - you will be ok with plenty of support around.

I do a lot of walking and always have done, so that is a help if you do. Keeping active helps the chemo to work properly I’m led to believe so may reduce side effects.

Take care and good luck.