ANGRY,CONFUSED AND VERY SAD!!!

Welcome to our site.  (The one no one wants to belong to.)  You are in the right place.  The diagnoses of this disease bring out all human emotions including those you are voicing.   Therefore, dear graynosa,  know that we hear you, relate to you, and understand the feelings of dismay you are experiencing.  Please know thought that your girlfriend has much to be hopeful for, as within the last few years treatment options for this cancer have increased significantly.  In fact, it is my personal believe that in some instances it could be considered a chronic disease.   
I suppose that a liver transplantation and resection have been ruled out. 
Your quest for a second, professional, opinion is a good choice.  I would however; like to mention USC, as their biliary team treats a relatively high volume of Cholangiocarcinoma patients.
Please know that you are surrounded by loving, caring, people who offer freely to you (and anyone) the knowledge of their very own experience with this disease. 
Hugs,
Marion

Dear greynosa, Welcome and sorry you had to find us. I am a CC survivor, 3 years cancer free!! I have an amazing story to share and you can read it at www.catherinedunnagan.com under the telegraph link. There is HOPE, I was 52 when diagnosed. Like every one with this cancer I was STUNNED, other cancers you are always looking for, not that the words "you have cancer" would be any less painful, but who knew we had a bile duct and it could be cancerous! 
The most important advice is make sure you have  a great CC doctor, our cancer is so rare that you need a doctor and cancer center who is aware of all the treatments and trials. I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hopsital, St. Louis MO. I would not be here if Dr. Chapman didn't believe in transplants and help develop there protocol!!
I look forward to hearing more of your story, and please ask any question, you will get so much info and life expierences here.
Lots of prayers and HOPE-Cathy

Dear greynosa, thank you for telling us a little more. I liked the story about the parent who came forward to pay the Cobra. Just when you start to loose a little faith in some people someone steps up to the plate and really delivers! Good story.
Can you tell us where the CC is located and what the doctors said about her prognosis, like is it contained? If you can we would like to know a little more about what the Doctors found.

Hi,
I am a patient of this disease for 39 months, so I think my suggestion may be of interest to you.

1. Go to the social security office near you and apply disability benefit for your girlfriend. You will get disability financial help since your girl friend had worked 22 years . But the most important benefit of all is that, your girl friend will get the Medicare benefit in 18 month from the date of CC diagnosis rather than at the age of 65.
2. If I were you, I will go to USC now , get the second opinions on surgery, radiation and oncology there and start the treatment there rather than The City of Hope ,especially your financial means is limited. see a liver specialist ( surgeon) first , then follow his suggestion to see the next specialist, radiation or oncology.
Surgery provides the ONLY possible cure for this disease. Don't waste money on other healthcare institutions if money is of concern. Remember, not all the healthcare institutions are equal of quality esp. for this cancer. And Please forgive me if My wordings above is too strong because I am only a simple man and not good at fine expression. But I care about your situation.
God bless.

Hello everyone,

First of all,sorry that I haven't been keeping you all up to date on my wife's (Gingers)health.Thanks to the generousity of some of the faculty and staff from work.They gave us a airfare round trip,hotel accommodations and limousine service to Las Vegas.And we got married on October 8th.I must say it was a very emotional ceremony.She has started her Chemotherapy and she seems to be doing well with it.The only thing that I've notice is that she gets very weak for a few days.She is getting her abdominal fluids drained about every two weeks,an average of 4 to 6 liters of fluid.We are still getting lots of help and support from the school community.The director of the community service and I bought about 3 hundred of the bracelets and passed them out through out the faculty and staff and students.It is great to see people wearing this bracelets in support for Ginger. She is being well taken care of through the day by her daughter,that moved in with us.Ginger is going on my health insurance policy starting in December.This difficult times are really taking a toll on me also.I am now on stress medication and medication for my migraine headaches.It has been very difficult for me to be at work.Because I have to talk about it 10 to 15 times a day.People just have so much love and care for her,it's amazing! God Bless You All. And thanks for the support and prayers.

Dear Greynosa, I would like to add my CONGRATULATIONS on your marriage and what a beautiful thing your faculty did for the two of you. It really shows the love they all feel for you both. I love the idea of  passing out 300 bracelets and I doubt we ever had so many given out at one place. It is a great way to get CC out there as people will always ask what the bracelet is for. Thank you for doing that. I am so glad that Ginger's daughter has moved in, you sound like such a loving family. You mentioned talking about everything so much, I have a suggestion to reduce your stress. I made a list of friends and family who were constantly calling or asking and I was so mentally exhausted of repeating. Every night I emailed an update about Teddy to all with one email. I explained that I just couldn't keep talking about it and while we appreciated the concern I also asked that only close family make calls. It was great, except for the kids calls came only when visitors wanted to come as everyone was getting their nightly updates.Really eased up the stress. Sending love and good wishes for the best and please do keep us updated! Be Strong.