Newly diagnosed Colangiocarcinoma of the bile duct

Hi Valerie,

Thank you so much for sharing your experience and the information. 

I'm sorry to hear you are experiencing so many side effects and hopefully it means you are not on the placebo.  My husband suffered with fatigue after his first round & bloods confirmed his Neutrophil count was slightly below the trial limits so he had to have a 3 week break.  They slightly reduced his Capecitabine dose and he has subsequently felt much better.  I hope too your doctors can give you something to ease the nausea so that you can regain your appetite, it can't be easy with such a restricted diet too.

I tried to research Signatera and found a report by NICE (who advise our NHS) and do not advise it's routine use at the moment.   I do believe there are trials but sadly it always comes down to being cost effective within the NHS.  I will ask about it though.  It's wonderful for you to have the reassurance.   My husband is having his first CT scan this week since starting the trial, the extra monitoring was the main reason he took part.  Results may take up to 4 weeks.  I guess you will be having regular scans too?

He was given his 4th infusion last Friday and apart from some slight itching the next morning has been fine this time.  

I find navigating these forums very complicated, but if you can find the one I started under Artemide your information might be useful to others on the trial.  Otherwise I'm very happy to hear from you on this one.

Wishing you well this week with your 2nd treatment & look forward to hearing how you are getting on. 

Jane x

Hello Cillajane 

I’m wondering if your husband had fewer or more side effects on the week without meds. It is my fourth day and I’m so sick can’t eat. Taking Zofran for nausea a now loose BM’s with intense fatigue.  Thursday I will get blood results before the infusion.  I will be getting CT scans every quarter as per clinical trial schedule.  I get results same day since they have radiologist on staff  same with mammograms (within 30 minutes). Not every medical center is the same.  New York University Perlmutter Cancer Center is a very large medical center, a  teaching hospital rated #1in New York City and #3 in the country with an umbrella of specialty hospitals

Wishing your husband good results with the CT scan and sending hugs

Hi Valerie,

I think I have replied to this in detail under the ARTEMIDE thread.  As his side effects  are so minimal there really isn’t much difference in the weeks he takes the capecitabine & when he doesn’t.  The fatigue has been reduced with the slightly lesser dose.  To be experiencing these side effects so soon may indicate you are actually receiving the trial drug? I hope these soon settle down for you, constant nausea is horrible. 
Sending a big hug & well wishes xx

Sorry to here that. I have advanced cancer of the pancreas resulting in a high bilirubin.   Because or this I'm now having an MRI  of my abdomen next Monday  followed bh a stent to drain the bile and lower bilirubin levels. After that I will  hopefully get chemo.

Anyone whose has any knowledge I'd be pleased to here from. Hadn't realised the drain can get blocked 

Alan

Hi Alan,

I’ve noticed your post and I’m concerned you may not connect to anyone that can help you on this particular thread.  It might be better to start your own where you can ask for specific advice relating to your symptoms & diagnosis.  There are so many kind people on here that can offer advice & support.
Wishing you well with your treatment & sending well wishes, take care 

Jane

Hey I've had bile duct cancer had the tumour resected back in April 2021 and so far so good, I had a lot of bumps in the road leading up to my surgery. But I'm still here and thriving and I had 8 cycles of capecetabine, it was tolerated well by me.

I have a CT scan next week as I've had an elevated tumour marker reading so they are just playing it safe to ensure it's returned - fingers crossed for me, it's so isolating and I darent Google it, as it scares me to death! 

Thank goodness I've found this forum.

Happy to speak to anyone out there who may be anxious.

Should read to ensure it hasn't returned 

Hi JWing,

I really feel for you, waiting for results is such a stressful time.  

Have you looked at the AMMF website?  There is so much information on there which might help, knowing there are targeted treatments out there & knowing the right questions to ask if you need them might help you feel more confident & positive.  You can also contact them.

Also it might help to start your own thread to connect with people who have experience of your exact situation?  Still under Bile duct cancer, there is an option ‘Diagnosis & treatment’ or ‘General discussion’ 

I have no idea how accurate the tumour reading is, other’s might.  I’m praying it is a false alarm & you have good news, do keep us posted.  

Hi 

Thanks it's the waiting it is truly tormenting times. Especially when you know it could easily return as it's an aggressive cancer & can be deadly.

I really hope the tumour markers are up during to something else and not because of the return of the cancer.

I will find out what it is that I'm dealing with & face it like I did before, with bravery & fight.

Hopefully fingers crossed it will be a false alarm.

It was good to see the broadcaster And journalist Katie Nichol had opened up about her experience with this type of cancer & she went back to work after 10 weeks like I did!

It's more popular than we think.

I've been in touch with the AMMF charity and they weren't much help to me sadly.

I think due to the rareness of the cancer they don't have any support groups. So I will stay on here with Macmillan.

Thanks again for your support.

Take care

Xx

Hi there

I had surgery to remove bile duct cancer 4 years ago. The Whipple procedure was mentioned by my surgeon after the operation & I declined as I weighed up what my options and went for 8 cycles of capecetabine which was very well tolerated by me thankfully, no hair loss.

I underwent 10 hour surgery & am grateful to still be alive.

Good luck with the op and let me know how you get on.

My operation took place in Sheffield UK April 2021.