Intrahepatic cholangiocarcinoma & Capecitabine

To Dianthus and CillaJane,

I am so happy to have found fellow patients in the clinical trial and chemo I will be starting on 1/2/25.  I will report my experience and share any tips that help with the process. I too am retired and will be able to rest when needed. I am hoping for mild symptoms

 I was told that AstraZeneca will cover the cost of car service up to $200 US dollars if it s over 40miles each way

Hi there

We can all support each other through this challenging time.

My third cycle has only 3 more days to go and I've been much more tired than the previous 2 cycles. 

The most important things I've learned so far: keep well hydrated (at least 2 litres a day), moisturise hands and feet at least twice a day, listen to your body and rest when you're tired. I take the pills with my meals (breakfast and supper) and then have yoghurt and a banana afterwards. I find this reduces the nausea.

It's hard to take pills that you know are going to make you feel ill, but we've got this and we'll all keep each other going. 

I'm in the UK and we get our travel expenses paid: I assume that must be the same wherever you are in the world if you're in the trial. 

Best of luck when you start!

Thank you for the tips and encouragement.  Sounds like you have managed this process very well.

i have found food grade peppermint oil helps with nausea.  I put some on the tip of my finger and rub it under my nose and take deep breaths.  Whenever possible I try to avoid another prescription pill.

i will report my experience after the first cycle starts on 1/2/25.

when my mood swings, I use music and games to distract from negative feelings.  My husband is my rock and very supportive

stay well and one foot forward a day at a time ….

To Packing Expert & Dianthus,

Thank you to both of you so for your advice & tips, I will pass them onto my husband.

Packing expert, I'm wishing you well in the remainder of your tests..

Dianthus, it's a great comfort to hear how someone further down the line is managing the side effects of the treatment.  I hope you start to feel better when you have the weeks break.  As you say rest when you need to.

The latest on my husband is that just after one cycle, his blood results (Neutrophil) has been slightly below the trial's range.  He became very tired in the second week. So the treatment was cancelled for the next day.  We returned the next week (yesterday) optimistic as he had more energy but it is still to low.  So we return next week on Christmas Eve and if all's ok he will commence the 2nd cycle on the 27th December.  They are assuring us it's the Chemo that's effected the bone marrow, probably because of his age, so going forward they will reduce his dose.  And they are going to give him meds (anti-histamine) before the infusion as he had some sort of allergic reaction last time.

Wishing you both a wonderful Christmas... and many more New Years to look forward to

Hi Packaging expert,

Wishing you a Happy & Healthy New Year! 

Have you started your chemo & trial?  I know Americans change the order of their days & months to us in the UK so I'm not sure it it's 2nd January or 1st February?

If you have, I hope it all went well.  My husband finally resumed his 2nd cycle on the 27 December after a 3 week break.  He was absolutely fine and is feeling good & eating well.

I hope you are keeping well 

Hi Dianthus,

Wishing you a Happy New Year, and just wondering how you are doing?

I'm thinking you may have started your 4th cycle?  My husband is back on track but only on his 2nd.

Sending you well wishes...

Hi Dianthus,

I hope you are keeping well we haven't heard from you for a while.  I just thought I would let you know that I have started a new thread under the heading 'Artemide Trial'.  It would be great to hear how you are getting on as you are a few further cycles on .....my husband has taken on your tip of drinking more water!

Sending well wishes

xx

Hi CillaJane

Sorry I hadn't replied to your previous message. I'm doing well thanks, and am on my 5th cycle now. I'll also message you on the new thread with more detail.

All the best to you and your husband x

Hi Wayzgoose,

I was just wondering how you are getting on, you must be near the end of your course of capecitabine?  I hope you are finding the side effects manageable.  I'm hoping you can see the light at the end of the tunnel??

After the first course which made my husband extremely tired he had to have a 3 week break and they lowered his dose slightly.  They said it could be because of this age (nearly 77).  So he is just a few days from finishing the 3rd cycle but has tolerated it well so far.  He usually has an afternoon nap.  

Sending you well wishes

Hi Cilla Jane.

Thank you for asking. During my 6th course of chemo I developed palmar planter, which is a rash and swelling on hands and feet. I was instructed to stop the chemo immediately.6 weeks on and it's under control again but I still havent resumed chemo. My MDT are concerned I might have a recurrence, I had a MRCP Scan, like an MRI scan, but more detailed on Thursday and await the results.obviously I'm concerned, but worrying doesn't change anything, so I remain positive.

I found, with the chemo, each course more difficult than the previous, I don't know if that a common reaction or not?

The strange thing is, I'm happy, Even on the painful days, I wake up happy! Strange?

It's frustrating,  but all of us with this disease know that life can change in a heartbeat.

I wish you, your husband and fellow sufferers all the very best. Be happy