Capecitabine

Thank you, really reassuring x 

Thank you replying, that's good to hear and I walk everyday so it's good to know that will help. I'm feeling  a lot more positive after reading these messages x 

Hi Covgirl. 

I’m assuming you are from Coventry? If so, I worked in the Windmill pub for the beautiful summer of 1995 and I hope it’s still there!

My experience of capecitabine wasn’t very nice. I didn’t want to jump in and be the first comment you read, because my side effects were very rare. I have the DPD enzyme deficiency so I only had half a dose anyway. They did warn me that I would be twice as likely to have the weirder side-effects.

As it was, it caused me to have heart spasms. I didn’t know what it was at first and it took a while to be diagnosed, but it was painful and terrifying. I literally only took one dose of the drug ( also supposed to have 2 doses a day for 14 days) before it happened and then they tried it again on cycle 2 and it happened again, quicker and more painful than the first time. 

After this, my oncologist insisted that I stop the chemo completely, as the heart spasms mimic a heart attack and can cause one. She initially offered raltitrexed as an alternative but then changed her mind.

 I’m telling you this just to make you aware. As far as I can see, most people have quite bad sickness or hand-foot if they have any side effects, but there are a few of us who definitely have more severe reactions. I was in the position that this side-effect had been brushed under the carpet a bit because it was so rare, so I had no idea what was happening and I would hate for anyone else to be in that position.

Take Care and don’t worry about this too much.

Nic x

It is! Great pub. Thank you it's really useful to hear your experience and I'm sorry you had such a tough time.