gavin

Hi Karen,

Thanks for that, very interesting. And my thanks to you and Heidi as well for attending the conference and representing the Foundation as well. I am sure that the booth is looking great!

I so agree with the 2 points that you raise re pain and getting to grips with it as soon as possible if that becomes an issue. I know from my dads experience that they started him early with this and did an excellent job throughout of keeping on top of it.

My thanks once again to you and Heidi for doing this, great work!

Hugs,

Gavin

Hi Sammie,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. But I am very glad that you have joined in with us all as you are in the right place for support and help and you will get loads of each from everyone here. Having been where you are with your dad right now 5 years ago myself with my dad I so know how you are feeling and what you are going through at the moment. I know it was a big step for you to register and join us all and I am glad that you did.

I too am from the UK, in Dundee up here in Scotland and my dad was diagnosed and treated up here with PDT. Can I ask where your dad was diagnosed and where is being given his chemo and by whom? Sorry for the questions but the more info we have the better we can help.

Has your dad sought a second opinion for his CC and how would he feel about that? If not, I highly recommend he seek and opinion from Juan Valle at the Christie in Manchester. He is so very very experienced in treating patients with CC and your dad would be in very good hands with him. He has helped a few of our members and they only have such good things to say about him.

Here is a few links for you about Prof Valle and he can be found through this link –

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

Juan also is vice chair of our medical advisory board – http://cholangiocarcinoma.org/juan-valle/

Another great link that is totally UK specific is AMMF and you will also find lots of info re hospitals and treatment centres in the UK – http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/

I know that you are anxious about getting the latest ct results for your dad, that is so very common and we all go through that. Please do not give up hope though! I know it can be tough sometimes but please stay strong as your dad and your kids as well will need you to be strong.

You have reached out for help and we are here for you, you are not alone in this anymore. If you have questions just ask and we will do what we can to help. Helen who runs AMMF is a gem and should you wish me to I will contact her on your behalf if you like. I know that under the NHS system your dad is entitled to a second opinion from someone of his choice and I am sure that your dads current onc or gp would be able to refer your dad to Prof Valle and I am sure that he would be happy also to see your dad.

Please keep coming back Sammie and keep us updated on everything. We care.

My best to you and your dad,

Gavin

LOL! Seems like your Packers are in CTRL and my Bears are on the – lol!

I know what you mean Moontje. Trying to stay calm during all of this is not easy I know, but I think you will be able to make better decisons and deal with everything if you can stay calm. Again hard I know sometimes considering everything that you are dealing with right now.

Hugs back to you,

Gavin

Good call on the ctrl and + Marion! The zoom of 10% makes a huge difference to the text on the boards!

Thanks!

Gavin

Thanks for the reminder Marion. 45 minutes until it starts and you can still register for it here –

http://cholangiocarcinoma.org/new-upcoming-webinar-using-patients-own-immune-system-to-knock-out-cancer-adoptive-cell-therapy/

Just emailed you but I’ll join you once again in doing your yippee dance here as well!!!! Brilliant news!!!!

Time for you to go out and do some real dancing then!!

Love ya,

Gavin