Newly diagnosed Colangiocarcinoma of the bile duct

Hi there, I can honestly say Prof Bridge has, mentally, been such a saviour.  I was in a very bleak place before I met him.  Such a lovely gentleman, who got things moving for me after : months of being passed from pillar to post. 

My rash is a bit odd … it started on my chest then moved to itchy spots on my shoulders. I didn’t know it was a potential side effect of the immunotherapy until I mentioned it to the nurses who looked at it and said to her colleague it could be.  It doesn’t seem to be a side effect of the chemo. 

My overall rash has improved somewhat from the early days and apart from raised bumps on my chest I only have have breakout spots in various places such as arms and legs, somewhat similar in irritation to mosquito bites but a little crusty.  A friend of mine who practises holistic medicine recommended using aloe Vera and it does seem  to help. 

Scan results back on 15th.  I haven’t told my husband or childrenn I  had a scan at the last vidit as I don’t want them to worry, but I did tell a good friend who is going to accompany me on my next visit. I usually try and play down visits and work whilst waiting for them to prepare my infusion since I honestly want to forget this ever happened, but it’s hard. 

I suspect you and your husband were as shocked as we were to receive such a diagnosis.  I am 66, fit healthy and simply went for a blood test regarding something else.  God works in mysterious ways   Thankfully, like your husband, I was eligible for curative surgery (I particularly like the word curative) and see this trial and chemotherapy as a necessary investment into my future, similar to a pension

Hope this helps.

Best to you both

Hi,

It was a shock and took 9 months for his diagnosis.   It sounds as if you had a vigilant doctor who did the correct bloods.  We feel exactly the same as you about the op & the trial.  He was 76 last September when he had his op, 77 now.  Very active, gym member & referees walking football.

When my husband experiences these raised rashes they only last around 45 minutes.  We don't know if it would be longer if he didn't take an anti-histamine (which he is now taking a lower dose daily).  Do yours disappear reasonably quickly?  I'm guessing the bite-like break-outs take a while to heal?

I have every thing crossed for the 15th and pleased you have someone to go with you.

Gosh that’s a long time waiting to get confirmation particularly since this is supposed to be an aggressive tumour

Maybe if the NHS decided to fund Signatera, as funded by Medicare in the US, who also fund histotripsy we would all have an easier journey

The histotripsy machine at Addenbrookes has been provided by a private donor - if not we wouldn’t have this available at all!! 

sorry for kvetching, but I do wonder whether this is a case of negativity creeping in due to scanxiety

Hi, It is an anxious time & they roll round very quickly on this trial.  My husband has one booked again at the end of the month.  
If you can, try to find the discussion group under ‘ARTEMIDE’ where anyone else on the trial will find your symptoms interesting.  
Do keep us posted. xx

All clear :) 

Have you seen the presentations on YouTube from the AMFF conference in May?

Mr Hassan, my surgeon from Liverpool Royal, gave a presentation on the criteria used to decide if curative surgery is an option and confirming it has good outcomes 

Professor Bridgewater, who I consult privately to sense check the oncology advice I receive including this trial, gave two presentations - one in relation to what trials are on- going (ours was mentioned) and an update on new treatments.  

Both consultants are clearly extremely knowledgeable in their respective fields and this gives me great comfort.

I found the presentations overall very interesting and uplifting - clearly there is much going on in this field with good outcomes being achieved

Everything cross for your husband

• I’m so pleased for you.  I was thinking of you Monday.  My husband’s next one is on the 28th.  
  We went to Addenbrooks yesterday about his hernia.  Apparently it’s very small & of no concern. They said we wouldn’t have known but for the scan but it could get bigger so he is on the waitlist.  He can go back to the gym  & resume his normal program. 
  Then back to clinic Tuesday & infusion Friday.  They roll round so quickly! 
  Take care, relax & enjoy the summer x

I have only watched a couple of them, I must find time to watch the others.  It is reassuring that there are new trials & targeted treatments that appear to be making progress. 

I just feel there should be more awareness how important it is to be treated at specialist hospitals immediately you are diagnosed.  It appears there is an increase in younger people with this disease which is incredibly sad.