Intrahepatic cholangiocarcinoma & Capecitabine

Hi CillaJane,

I'm taking the same chemo tabs. 4 tablets twice a day, 2 weeks on, 1 week off. I'm on my 5th course. 

My side effects have been minimal, the worst being loss of appetite. But I have a lot of small side effects,  including fatigue, acid reflux, stomach pain, lack of energy. Sometimes I only suffer from a couple, sometimes all. The cumulative effect is very wearing, just taking the tablets twice a day becomes a chore, but I focus on a hopefully successful outcome. My side effects started after about a week. 

My cancer nurse has prescribed medication for the pain and acid reflux, which helps a lot. But also means more tables to take on a daily basis. I've written down a timetable and put an alarm on my phone when they're due!

Lack of appetite is the worst, but the dietician is helping with that, suggesting eating little and often. 

My life is being dictated by when to take tablets and when to eat. I spend a lot of time daily planning my chemo tab/ eating routine.

It's tough, but I focus on where I hope to get to.

I long for the chemo to end and have been told I will have 8 courses, but obviously that depends on how things develop. 

I hope this info helps and I hope your husband's side effects are minimal. 

All the best 

Wayzgoose

PS. I had bile duct cancer. 40% of my liver was removed and my bile duct and my gall bladder. That was in May this year. Progress hasn't been a straight line but it has happened albeit slowly. I've never regretted having surgery and enjoy everyday as best I can. It's tough, but I feel it's tougher for my wife.

Hi Wayzgoose,

Thank you so much for all that info, it's very useful.  My husband is on exactly the regime, he started this morning.  I don't think we realised how disciplined and organised we'd have to be. (They also removed his gall bladder and I believe he only has one bile duct left).

You do sound as if you have been brilliant at managing your routine, we will adopt your method if things get a bit complicated.  I had to use a chart for meds when my husband came home after the op.  You think you'll remember but it isn't that easy as the days roll on.

He had his first infusion of the trial drug yesterday (he had a slight reaction which makes us think it is likely he wasn't given the placebo) and started the chemo tablets this morning.  

I do hope your side effects remain at a manageable level & you can now begin to see the light at the end of the tunnel.

Do you mind if I ask if you've had any scans to check your progress or if any are planned in the future?

Once again, thank you so much.