Newly diagnosed Colangiocarcinoma of the bile duct

Hi again JWing,

I'm sorry you didn't find the charity helpful.  There is lots of information on their actual website including new treatments such as molecular profiling.  They also have a very active Facebook Page where people support each other with information but there are also lots of sad posts which you may wish not to read.   

I tried to download an article in the Sunday Mail which included Katie Nicholls and Zandra Rhodes amongst others but I my computer skills are limited and was unsuccessful.  

My husband had his resection last September and is in the middle of his 6th cycle of capecetabine.  Like you his has tolerated it well and at 77 looks as fit as ever.   He's also on a trial for an immunotherapy drug alongside it, but it's blind so we don't know if he's receiving the placebo.  We took part because of the regular monitoring & scans for 7 years.  But they do cause anxiety.

With a scan next week, hopefully you will not have to wait long for the results and it will be good news.  Keep us posted.

Hi Cillajane

Thank you for your reply. The AMMF charity person did tell me there was a Facebook group but sadly I don't have Facebook and don't intend to get it, so that strikes me out of that one.

However I will visit website and look further.

I don't really like to hear of sad posts as I would rather focus on the positives as it's too grim otherwise.

Any type of investigation causes stress and there is always the fear it's going to return.

Glad to hear your husband is doing well and the capecetabine is suiting him. He's good for his age as I was 53 when mine struck & I'm going to be 58 soon, so still young in comparison.

Keep in touch xx

Hi there … I too am on the trial, luckily no side effects from the chemo and minimal from the infusion.

I do have a slight itchy rash and each time I have the infusion my bp drops by a significant amount which my Dr niece says is likely to be the immunotherapy as a placebo would likely increase not decrease it.

Thought I would share this uplifting story with you .  We’re going to be around for a while !! 

livercanceruk.org/.../

Hi Peej1,

It's so interesting to read about your experience on the trial and thank you for that inspiring link.  We need more stories like that!

It's my husband that is on the trial and there is a discussion group I started that is titled 'Artemide Trial by AstraZeneca' if you would like to join it.  It should be under the discussions in the bile duct cancer forums, or just search 'Artemide'.

My husband also experiences a rash, it's quite red & raised like hives and his BP sometimes drops.  He seems to get them randomly during his cycle and recently they have increased in frequency but are milder.  He takes an anti-histamine tablet as soon as the itching begins and that seems to relieve the symptoms.  They also give him an anti-histamine infusion before his trial infusion.

He also has tolerated the chemo (finished now) well.

It would be great if you could also post in the other thread, it might encourage others as it would bring it to the top.

Great to hear from you.

Interesting, i would class the rash on my chest as similar to hives and I also have break out spots particularly on the top of my shoulders, I don’t take antihistamines but use ice when it become too problematic.

the last time my bp dropped too low I said to the nurse, but that’s a good sign isn’t it?  To which she replied … it’s a bit of a hint and winked. Who knows though … they certainly don’t. 

I’m at Christie’s in Manchester, if you don’t mind me asking where is your husband being treated?

I’ll definitely look up that thread. 

He’s at Addenbrooke’s, Cambridge.  He doesn’t have a BP problem while he’s at the hospital having the infusion. We’ve met two other ladies who are participating in the trial at the clinic day. It’s so nice to share experiences.  If you click on my profile it’ll tell you more about my husband & his diagnosis. 
They have recently discovered an incisional hernia and we are hoping that will be treated fairly promptly.

It would be great if you could find the other forum and occasionally share how you are getting on. 

Hi there, how lucky you are to be at Addenbrookes, they have just received a histotripsy donation and will be the first NHS hospital able to offer this groundbreaking treatment for bile duct and liver cancer. Hopefully none of us will need it, but it’s always nice to have a Plan B

So sorry to hear your husband has developed a hernia.  Finger’s crossed for him. 

I had my surgery at the beginning of January.  Unfortunately, I developed sepsis which set me back so didn’t start the trial until literally the day before cut off day  

I have scanxiety at the moment, hopefully all will be good.  

Sepsis, that must have been a tough & gruelling recovery.  My husband’s main reason for going on the trial was the regular monitoring & scans, but they do come with anxiety.  Then it’s so reassuring when you get a clear report. 
Yes, it’s good to know of other treatments just in case. 
How are you managing on the Chemo?  He found the 6 months went surprisingly quickly. 

Hi there, sepsis was hard; the antibiotics were horrendous, but in the end they did there job by curing the abscess that had developed on my liver

Currently doing chemo cycle 5 of 8.  No obvious side effects.  My blood platelets did fall to below 100 when I attended on the 4th cycle and they wanted to defer me for a week, but we were flying to our apartment in Spain two days later so they reduced it by 25% and the last time I went the platelets had returned to an acceptable level. 
I contacted Prof Bridge just to make sure he was happy with the reduction and he came back with two words ‘very standard!’   it’s unbelievably comforting to have him on speed dial

Hi again,

One of my husband’s blood count dropped just below the trial limit after his first cycle.  It took an extra two break before he could continue.  They also reduced his dose of Capecitabine and said it wouldn’t have any impact so it’s comforting to know Professor Bridgewater confirms this.  
We didn’t reach out to the Professor until after my husband’s operation.  What a dedicated man, he replied to us on a Sunday morning!  We decided we’d make an appointment with him only if further treatment is required. I didn’t read about him & molecular profiling until after the operation, it’s reassuring there is the potential of targeted treatment if needed.
Can I ask more about your itchy symptoms?  
My husband had an episode as soon as we arrived home after the first infusion. His temperature was raised & his blood pressure dropped. & the rash was very raised.  It starts on his hands and spreads to his neck, armpits and sometimes his torso. He doesn’t feel unwell. (confusingly, he had similar before his op but he used to feel unwell for maybe for 45 minutes, need the toilet, and have to go to bed & sleep an hour or two.  This is what lead us to a diagnosis as it was his only symptoms).  He can now have these episodes any time during the cycle but doesn’t feel unwell or need to go to bed. They are very sporadic, sometimes none for weeks & recently became weekly but milder in nature. We aren’t sure it’s an indication he is on the immunotherapy because he does carry an epi-pen (for wasp stings) and might just be how his body responds to any other stress. 

I’m sorry it’s such a rambling long message , I’m very curious if yours are similar in any way? 

When are your scan results due?