gavin

Jayne, 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

Hi Pat,

Congrats on the 9 years and yes, you go shout out as much as you want to!!!! We love hearing stories like yours and I so know that it will inspire so may people out there. So go ahead Pat and shout out lots and lots!!! And here’s to the next 9 years too!!!

Go Pat!

Gavin

Thanks for that Kirsty. Fingers are crossed or the 13th and remember to let us know all the details and how your husband gets on with that. That’s good as well that chemo was able to be done yesterday even at a reduced dose and let’s hope that the antibiotics do their do, fingers crossed as well for that!

Cracking on with life again sounds like a real good plan to me!

Hugs,

Gavin

Jess,

Sorry to hear your news about the latest ct result of yours. I agree that a fresh set of eyes on everything can’t do any harm here and I wish you good luck on getting something arranged for this, Hopefully the new eyes will come up with a new plan to get you back on the road to stomping all over these little buggers! We are here for you too so please let us know how you get on with this.

My best wishes to you,

Gavin

Hi Rod,

Great attitude there! Kicking the crap out of this we like, lots!! My dad took a lot of knock along the way with his fight and after every bit of bad news he used to get down for a few days then come back out swinging again. Keep on kicking it Rod!

My best to you,

Gavin

Hi Vicki,

Glad to hear that today is a better day than the previous few and quite a few people seem to go through that as well with chemo. Can’t share any personal experiences with chemo as my dad never had it but I know that others will share with you here. Hoping that you dfo get that big surge of energy so that you can get out and enjoy that week of fun you have planned!

My best to you and enjoy your week!

Gavin

Hi Vicki,

Welcome to the site. Sorry that you had to find us all here and sorry to hear of your diagnosis. But glad that you’ve joined us all here as you are so in the best place for support and help and you will get loads of each from all of us. I know it’s not the same as a face to face group, but get a coffee none the less and join in with us all and we’ll do our best for you!

Glad to hear that you are with Dr Javle and I know you are in good hands. He has much experience with CC and has treated many from this site too. Glad to hear that your first chemo session went so well and hoping that the rest of them go equally smoothly too. And also, loving your positive attitude too! That is great to hear and will carry you far in this.

Please keep coming back Vicki and if you have questions then feel free to ask and we’ll do oyr best to answer them if we can. You are not alone in this. We are here for you and we care.

My best wishes to you,

Gavin