debnorcal

Cameron,

welcome to our special group, although i’m So sorry your father has been diagnosed with Cholangiocarcinoma.  I am so impressed with how well researched and clear headed you are in one short month since diagnosis.  This disease generally throws a gut punch that can knock us off our feet for a bit. I can tell you will be a great advocate and source of information for your dad.

My best advice is to have your dad evaluated by a multidisciplinary medical center that is expert in Cholangiocarcinoma.  I can’t emphasize strongly enough how much that matters. Community hospitals simply do not have the experience to know what treatment options are available or the expertise to successfully treat.  If your dad is in Ontario, CA, there are a number of excellent centers in that general area.  If you go to the main Cholangiocarcinoma Foundation website and follow the newly diagnosed tab, there is a link to expert centers by geographical location.  My husband also had a Klatskin tumor and was initially told he was unresectable.  I called several expert centers and asked their protocols for obtaining second opinions.  We obtained a remote opinion from John’s Hopkins Medical Center ( concurred with original opinion but suggested gem/cis to try to shrink tumor so that he may become eligible for surgery) and an in person visit with UCSF oncologist who brought case to their tumor board, where surgeon offered surgery).

i wish your dad all the best in this fight.  Please keep us posted on his progress.

debbie

Mary,

that’s take away from the article as well.  Although it’s highly unlikely that we’ll get any of these very rare CC mets, it’s important to be vigilant and have things checked out.

I am also grateful to Gavin for all the research provided to us !!

Debbie

Dear Aroha,

welcome to our wonderful group, although, of course, we all wish you had no need to find us.  In my experience, the general medical centers have very little experience with Cholangiocarcinoma, and will give patients the statistics you mentioned. Essentially, palliative care.  However, the medical centers that specialize in biliary cancers try to find ways to get the patient to surgery, or to newer treatments. I’m no familiar with which centers in New Zealand specialize in Cholangiocarcinoma.  I’m hoping some of our members from NZ will chime in to point you towards them.  Hang in there!

debbie

Wow, Kathy, your attitude is awe-inspiring.  I have to think that kind of positivity will carry you a long way.  I hope that you and your family have a wonderful holiday.

debbie

Hi and welcome to our discussion group.  We have many caring and knowledgeable members that are happy to provide information, share their experiences, etc. also, the search function can be very useful in finding threads on topics of interest.

debbie

I was so very sorry to read that Julie has passed.  Iowa girl was a big contributor to this board, offering encouragement and good advice to many of us.  Despite her medical issues, she remained positive and hopeful.  I will miss her contributions to our ongoing dialog.

debbie

I am so very sorry for your loss.  May memories of happier times with your mom comfort you during this difficult time.

Bridgette,

I’m sorry to hear that you’re feeling under the weather. Hope to read soon that the TACE did it’s job!

Debbie