treatment centre for inoperable cholangiocarcinoma
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Dear Jayne
I hope you don’t mind me writing to you but I would love to hear how you got on with your sister with her appointment in Bradford regarding the chemo. My sister was diagnosed with advanced Intrahepatic CC and had the resection but because the tumour was too close to a main artery they were not confident they could reach negative margins. Sadly results from an MRI taken show secondary cancer cells so she has been told no longer curative, looking at palliative care. She is currently on GEM/CIS (is this what your sister has been advised to go on?). I would love to hear how your sister is doing and what steps you have taken . We are also based in UK and like your sister, my sister is on her own and has a 15 year old so we are hoping and praying for anything out there that will delay this disease or indeed cure it. My thoughts are with you and your sister.Hi Jayne,
Thanks for that and for your post in the introductions section too. I am sure that you will get lots of repsonses over there. Very glad to hear that your sister will be seeking a second opinion at the Christie in Manchester and Juan Valle is very experienced as I said. Prof Lodge in Leeds is also very experienced with CC and I forgot to mention him so thanks Marion for that.
There are many options in the USA as I said and I know that you will get more opinions etc from our USA members on that option. Mayo Clinic is very good but there are a lot of good options in the US. The link I gave you from AMMF also has many good hospitals on it as well that are in the UK and I hope you will check some of them out.
Please let us know what they say at the meeting on Tuesday at Bradford and also what they say at the Christie also. Thanks as well for asking about my dad. My dad passed away back in 2009 but please do not feel bad at all for asking. I should have mentioned that in my earlier post to you when I mentioned him.
How is your sister doing today?
My best to you both,
Gavin
Hi Gavin,
Thank you for your support and your replies. Yes she mentioned it was because the cancer its wrapped around the arteries.
All the tests and biopsy was done at Bradford Royal Infirmary. Im not sure of the name of the specialist as she has seen a lot of doctors.
We have asked for a second opinion at Christies on Manchester.
I have been looking at the new drug merck (keytruda) and we are looking at that. I have heard this has great results and is approved in USA.
Yes we would definitely consider USA, I have been told the Mayo clinic is excellent. I have also heard a hospital in Germany is very good called Heidelberg, is this correct?
We will do absolutely anything at this stage.
Next appointment is Tuesday to discuss chemo at Bradford Royal Infirmary.
How is your father?
Jane….have you consulted with Prof. Lodge, Leeds?
http://www.spirehealthcare.com/leeds/prof-peter-lodge/liver-surgery/
Hugs,
MarionJayne, another thing. Your post may get more views and responses if you could repost under the Introductions part of the site at the top of the page. Could you repost there as well please?
Thanks.
Gavin
Hi Jayne,
Welcome to the site. Sorry that you had to find us all here and I am sorry also to hear about your sister, but glad that you’ve joined us here as you are in the best place for support and help and you will get loads of each from everyone here. I too am from the UK, in Dundee up in Scotland.
You say you are in Leeds, where was your sister diagnosed and do you know the name of the specialist that is treating her? Also, what did they recommend as treatment for her and did they say why the cC was inoperable? Sorry for all of the questions but the more info we have the better we can help. My dad’s CC was also deemed inoperable at diagnosis, too close to the portal artery and that is unfortunately quite common with this cancer. Many symptoms sometimes do not show until the cancer is very advanced with CC.
Here are some UK specific links for you that will be of help. Have you heard of AMMF in the UK? It is the UK’s only CC charity and you will find loads of UK specific info there.
http://www.ammf.org.uk/cholangiocarcinoma/specialists/
http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/
If your sister is prepared to travel and can afford it there are many centres in the USA that would be able to help and I know that some of our American friends will be along soon to offer their thoughts on that. Have you sought out a second opinion in the K for your sister? As I understand it in England, you are entitled to be referred for a second opinion to a treatment centre of your choice but you have to be referred I think.
Prof Juan Valle at the Christie is also very experienced with treating CC patients and here is a link to him –
http://www.christie.nhs.uk/about-the-christie/whos-who/our-consultants/juan-valle.aspx
He would certainly be one of the people that if it were me that I would want to be seeing.
I know that right now your head will be spinning with taking everything in that is happening to your sister, that is very normal. But please know that here you are around people who have been or are where you are right now and know exactly what you are going through. Do keep coming back and if you have questions please ask and we’ll do our best to help. Please keep us updated on everything, we are here for you and we care.
My best wishes to you and your sister,
Gavin
My sister was diagnosed yesterday with advanced cc and was told it was inoperable. She is 32 with very young children, 10 months and a 2 year old, she doesn’t drink smoke and is very health conscious.
I am desperate to find somewhere that would operate on her. Can anyone suggest where to try. We live in Leeds but will travel anywhere world wide, pay anything and do anything to save her.
Can anyone give me advice or any treatments. We have basically been told by the NHS that there is nothing they can do and haven’t given any advice as yet.
Please help.
Thank you
Jayne
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