gavin

Hi Kathy,

Sorry to hear that you are having such a rough time right now. Glad to hear that you were able to have the surgery and also that it went well. I know that this is hard for you to write about, so please, no apologies are needed for rambling as you put it. You go ahead and ramble as much as you want to, and if it helps, shout and scream as well! We are here for you.

You say that you feel bloated right now. I have a question, do you have any swelling of the legs, abdomen etc? I too also agree with what the others say about seeking further opinions about everything. We are big fans of that around here. Here is a link that may be of use to you in that –

http://cholangiocarcinoma.org/for-patients/major-cancer-centers/

Hugs,

Gavin

Lorraine,

Has the bili level been at 200 or so constantly since the metal stent was placed before Christmas? I just got in touch with Helen and will get back to you when I hear more. How do you think your brother would feel about travelling to Manchester for a second opinion?

And Lainy is right about her gut feelings instinct.

My best to you and your brother,

Gavin

Hi Lorraine,

Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear about your brother. But you are so in the best place for support and help and will get loads for all of us so I am glad that you have joined in with us here. I too am from Scotland, in Dundee and my dad was diagnosed and treated here at Ninewells.

Can I ask where your brother was diagnosed and treated please? The more info you can give us the better. What you desrcibe re surgery starting and having to be aborted due to the spreading is unfortunately quite common. My dad wasn’t able to have surgery due to late diagnosis and he also wasn’t able to undergo chemo at a later date due to the ducts being blocked, he would not have been able to handle chemo at that point.

I assume that the stents that they have tried to place have been plastic ones and not metal ones? Plastic ones are temporary and metal ones are permanent, my dad had the metal one and that worked very well for him. How do you think that your brother would feel about seeking a further opinion?

Here is a link to AMMF and you will find a ton of UK specific info on it –

http://www.ammf.org.uk/

As I understand it, patients are entitled to a second opinion under the NHS in Scotland so he should be able to get one. If you give me more info then I can contact Helen who runs AMMF on your behalf if you like?

Also, do you know how experienced the doctors who are treating your brother are with dealing with patients with CC?

I know it can be hard to stay positive, but please know that here you are around people who care and will do what they can to help. We are here for you.

My best wishes to you and your brother,

Gavin

Hi Paula,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad, but glad that you have joined us all here as you are in the best place for support and help and I know that you will get loads of each from everyone here. Thanks for sharing what your dad has been through and he has been through much hasn’t he.

My dad also had PDT with a metal stent placed after diagnosis and that helped him enourmously with the jaundice. It sounds like your dad is doing much better with the metal stents than the plastic ones. Yes the metal ones are permanent but they can be cleaned out if clogging becomes and issue. Great that he has gained weight as well and getting his strength back too!

Lainy is right about seeking further opinions and I second that view. Were the med team that your dad had experienced in dealing with patients with CC? Having a med team around your dad that is experienced with CC is crucial in my opinion throughout everything. Here is a list of major treatment centers in the USA –

http://cholangiocarcinoma.org/for-patients/major-cancer-centers/

I’m not sure how close you are to any of these hospitals or if your dad is up to travelling but if it was me then i would be looking to get my dad seen by someone in one of the paces in the link above. Your dad does sound like a fighter and from what you say I would guess that he is not ready for hospice care at this point, good on him!

I know that you will get recommendations from people on here about facilities. We also have this thread here which will be of use to you and is created by our members –

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

Link to all Cleveland Clinic posts here on the site –

http://www.cholangiocarcinoma.org/punbb/search.php?search_id=747446894

Hope some of these are of use to you Paula and please keep us updated on how everything goes. We are here for you and we care.

My best wishes to you and your dad,

Gavin

Hi Porter,

6 hours of surgery does indeed sound much better than 15! Glad to hear that your med team have a plan here and hoping that it goes as they are planning! Loads of positive thoughts coming your way and fingers are crossed here for you as well!

Hugs,

Gavin

Hi Cleverson,

Welcome to the site. Sorry that you had to find us all here and I’m sorry too to hear about your sister.She has been through so much already with CC and at far too young an age I might add. I am glad that you have joined us here as you will get a load of support from all of us so please keep coming back and we’ll do our best to help.

I too do not know of any trials etc that are being run in Brazil so can’t help too much with that I am afraid. I had a quick look around google. Have you looked at the cancer institute of Sao Paulo? I came across their website and that can be found here –

http://www.icesp.org.br/

There seems to be something at the foot of the page about trials in Brazil.

Found these as well –

http://www.accamargo.org.br/english/

Searching Brazil and Cholangiocarcinoma came up with this and I hope that this and some of these other links will be of use to you.

https://www.google.co.uk/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=brazil+cholangiocarcinoma

Please let us know how everything goes, we are here for you.

My best wishes to you and your sister,

Gavin

Many thanks for the link Mike.

Best wishes,

Gavin