gavin

Hi Donnie,

That is brilliant news, you just made my night! Pure dead brilliant in fact as you say on your side of Scotland!! Hopefully that is the stent working now as it should and that these numbers will continue to fall. The yellowing will take time to clear up and hopefully it will as the numbers continue to fall. Is the referral to Edinburgh still on the cards?

Yep for sure stay positive and enjoy this news! Tin of Irn Bru to celebrate tonight!

My best to you,

Gavin

Hi Melinda,

You got it, loads and loads of positive thoughts coming your way from over here! And of course I am keeping my fingers crossed for the best possible news from the scan as well. Please stay strong and you know that we are all here for you.

Hugs,

Gavin

Thanks for that Marion. Unfortunately I can’t view it, says I am in the wrong region and mentions viewing rights. Grrrr!

Dear Theresa,

I am so very sorry indeed to hear of the passing of your dear mum. Please accept my sincere condolences. I know how much you will be hurting right now and I so wish that I could help. Please know that we are all here for you and my thoughts are with you and your family right now.

Hugs,

Gavin

Hi Donnie,

Great to hear from you and welcome to the site. Why don’t you create your own username so that both you and your sister can both post here? I know that both of you are so welcome here and we will all help the 2 of you. I hear how frustrated you are with how everything is going for you right now, I would be too if I was in your shoes. Yes the fact that your tumour hasn’t grown and seems stable is good news and that is a good thing. But, as you say, the stent does not seem to be working as it should and this should be looked into as a matter of great importance in my opinion.

I hear as well what you say re farce and the Glasgow Royal Infirmary, so lets change tact here and go back to Edinburgh. Prof Wigmore has advised that you get that referral back to his team so let’s do that.He obviously feels that he can help as that is what I got from what he said to Helen. Contact your gp tomorrow Donnie, get the referral done and go from there. If they can get that stent working again and get the bili down then we can move on to other treatment options once that is done.

Keep coming back here Donnie.

My best wishes to you,

Gavin

Hi Lorraine,

I just heard back from Helen tonight and this is what she had to say.

“I’ve been in touch with Prof Wigmore at Edinburgh Royal Infirmary on behalf of your patient.
He suggests that this very much sounds like the stent isn’t working and the first thing the patient should do is ask their GP for a referral back to Edinburgh.
Prof Wigmore is away next week so he suggests the GP refers the patient to Mr Ewen Harrison who will be on duty for HPB during his absence.

Mr Harrison is Clinical Senior Lecturer and Honorary Consultant Surgeon, these are his various contact details.
Work: +44 (0)131 242 3616 (Susan Keggie, Academic Secretary)
Work: +44 (0)131 242 3661 (Valerie Georgiou, Clinical Secretary)
Fax: +44 (0)131 242 3617 (Academic Office)
Email: ewen.harrison@ed.ac.uk
Stent problems usual need prompt attention, so this patient should get on to this asap, and once that has been sorted then they can pursue the chemo or no chemo situation.”

Prof Wigmore confirms what I was thinking and I would urge your brother to speak with his GP tomorrow to get the ball rolling with the referral to Ewen Harrison. The quicker all of this can be done the better I would argue. I have met Prof Wigmore before and he is very experienced in dealing with CC patients. I met him at the SHBPN conference that was run in Dundee last year and he gave 2 presentations there. I would say that your brother will be in very good hands if he is being treated by Prof Wigmore.

Let me know how this goes etc then we can look at further options later.

Hope all of that is of use to you and your brother.

Gavin

Hi Lorraine,

You’re most welcome. Reason I ask about your brother travelling to Manchester as consulting with Prof Juan Valle at the Christie in Manchester may be an option. Here is a link –

http://www.christie.nhs.uk/about-the-christie/whos-who/our-consultants/juan-valle.aspx

Juan is very experienced in dealing with patients with CC and I know that he has treated quite a few members here that are from the UK. He is also the vice chair of the Medical Advisory Board here at the Cholangiocarcinoma Foundation and has also published much research about CC.

http://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/medical-advisory-board/

Will let you know when I hear more.

Best wishes,

Gavin