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.

Hello CillaJane, 

Today I've just had an oncology meeting, to discuss the results of my 2nd scan since the start of my treatment, which as with the 1st it's clear without any sign of reoccurrence. This is the best news i could of had.The only downside is the oncologist wants me to complete my 8 courses of chemo, which will take me through to February next year. As I have done up until now, I will follow his advice. I know Im not out of the woods yet, but its all positive. 

That's brilliant news, if your husband is receiving the immunotherapy drug and hopefully it will have a positive effect. 

Everyone's journey is different and I hope yours is as good as possible. But whatever your faced with I sure you'll cope. You don't realise how strong you are until you have no choice but to battle through.

Wishing you all the best, 

Wayzgoose 

Hi Wayzgoose,

That's brilliant news!  What a huge relief that must have been. 

Good luck with the remaining cycles.  I hope we can keep in touch.

Take care

Certainly, I'd be interested to know what effect the immunotherapy drug has, as you proceed. 

Wishing you every success.,

Wayzgoose 

Hi,

I was wondering how you are getting on with your next cycle of chemo?

My husband became very tired after just a week on the chemo tablets.  He would have to nap by mid morning.  His bloods show his white blood cell count is very low (below the range the trial permits) so he is having a 2 week break & hopefully next week he can resume his second cycle.  

Sending you well wishes, take care 

Hi CillaJane

I'm on the same trial as your husband, and I'm on my third cycle of capecitabine. So far the side effects have been a bit unpredictable but I'm keeping a detailed diary of them so that I can see if there are any trends over the three weeks. 

I've had quite a lot of digestive problems: indigestion and diarrhoea, but nothing that can't be put right with the appropriate medication.

I hope your husband is feeling less tired: I find that the fatigue comes and goes. Luckily I'm retired, so I just go with the flow and rest when I need to. 

It's good to have people to connect with who are on the same regime!

Oh thank you so much for getting in touch, it’s great to have contact with someone on the same trial and compare notes.  And it’s so good to hear your side effects sound quite manageable.  We are retired too which helps.  

I was just surprised how soon & quite severe the fatigue started. He was having a snooze just a few hours after waking up in the morning and would soon feel exhausted if he did much.  He’s usually very active. 

He had some sort of reaction as soon as we got home after the first infusion and again a week later.  Itching, raised rash, low BP, high temperature & diarrhoea.  Only lasted about three quarters of an hour & then he slept & felt ok.  But he has had similar symptoms in the past & carries an epi pen. 
 
Can you remember if you had any side effects on your first cycle?  
Have your cycles gone to plan so far?  

I agree that it's really good to be able to compare notes. My first cycle was relatively easy: indigestion and nausea plus fatigue. I felt great on the week off, but the second cycle was more challenging and it took me almost the whole week off to feel anywhere near normal. 

I had bad diarrhoea but I started taking loperamide in the morning so that I could go out without having to worry about loo stops. I do take a 'poo preparation' bag with me just in case, with wipes, spare clothes, towels, gloves etc, as I did have some very urgent episodes!

I'm assuming you're in the UK: I'm being treated at Queen Elizabeth hospital in Birmingham.

I had a slight reaction after the first infusion but nothing as dramatic as your poor husband.

Let's keep in touch with hints and tips, and to support each other through this. 

Thank  you so much for all the info & tips.  My husband was given all the medication for any digestive issues so it's reassuring to hear they are effective.

We travel to Addenbrookes, Cambridge which is about an hour and a half away from our home if the roads are clear.

With your reaction too, let's believe you are both on the trial drug even a placebo  effect could be positive & beneficial???

Wishing you all the best in your 3rd cycle, I will definitely keep in touch.

Take care