(2 replies, posted in General Discussion)

I wish I was coming on here today to write something powerfully optimistic, unfortunately I am writing with an update that my father passed from CC on Dec. 30th, 2011. Still doesn't feel real.

The hopeful thing that I can write though, if anything, is that we were told he had 3-6 months max when we first found out. He was diagnosed exactly a year before my wedding day. But he stayed with us another 20 months, and he danced with me on my wedding day. And although he kept asking with a smile "are we done yet" throughout the entire dance (gotta love him smile ) he was 100% strong as if nothing was wrong.

I guess I just felt the need to put that update out there and say that if anyone out there has any questions about what we went through, please don't hesitate to post. I know that when we were going through this, we just wanted to know that from other people.


(11 replies, posted in Good News / What's Working)

I just wanted to come on here and share my good news because I remember how much I was desperate to hear it a year ago.

My father was diagnosed a year ago with cholangiocarcinoma. We were told it was inoperable, wrapped around a main artery, and they gave us 6 months and no hope. My father was SO sick and lost so much weight and our whole world changed. As his only daughter I was terrified at the idea that now my father would not be at my wedding.

He has been on chemo (I believe gem/cys) ever since.

The first good news came a few months ago when the doctors told us that very very slowly, the tumor was getting smaller and that he could stay alive as long as he was on chemo. To us this was good news but my father fell into a deep depression at the thought of always having to be on chemo. He has barely left our house in months.

But today I am excited to say that they are now telling him that he may be able to stop chemo. And in 2 months he will be there to watch his only daughter get married and I will even get a dance out of him.

I don't know the details of how things will work, or if he will ever have to have chemo again ( I am sure he will) but the fact is that a year ago he was dying. There was no hope. And now, that's just not the case any more.

Just wanted to share.


(2 replies, posted in General Discussion)

This is perhaps a horribly morbid question, but it's the main one weighing on my family's mind right now.

My father was diagnosed with CC in April. It is wrapped around an artery in his liver and therefore inoperable. He had jaundice and was in pain which was what made him go to the hospital. He has been on chemo and the tumor has not grown or spread. For a long time he was very nauseous and had diarhea and lost a lot of weight. The doctors have tried a new med and the nausea and diarhea are gone and he has put some weight on. The only new development is swelling in his ankles which we wonder if that's just from laying down so much these past few months.

So here is my question. We know he is sick and he's thinner. But he seems fine. He works on his car and goes fishing on his boat. It is so easy to forget that we may soon lose him and that he may not be able to dance with me at my wedding in 6 months. My question is, will we have some warning? I hate to make people recount their experiences of loss, but what are signs? If he is up and running around and the tumor has not grown, does this mean we have more time with him than we thought???

We are just wondering how this disease works....

I am so thankful for anyone willing to answer such a horrible question.

I am SO thankful to have found this web site...I know that the answers to all of my questions can be found on here, but I just wanted to throw my story out there and see what I got back.

My father was diagnosed with CC in April 2010. I don't know what else to say about that except that we are being optimistic and are thankful to have this time with him. As his only daughter my last wish is to dance with him on my wedding day which is in 8 months.

My mother and I are just hoping to get some answers to our basic questions. And maybe if he sees this post and sees people respond to his specific story, it will help motivate him.

Here is what I know. In April when he was diagnosed, we found it because he was in pain and went to the ER. He had a blood clot in his lungs and had the jaundice. The tumor is wrapped around the hepatic artery and therefore inoperable. He is now starting what I believe is his fourth round of chemo. He started in June going once a week for  two weeks and then one week off. His MRI after the first rounds showed that the cancer had not spread beyond the liver and had not gotten bigger but did not shrink..Good news????? I am not sure of the technical terms but the doctor mentioned something about his blood markers in his liver going down a lot, which was supposed to be good news... His chemo is the gemzar/cisplatin. He is always nauseous and losing a lot of weight, though he's still got a nice full head of hair! He has diarhea as well. Also, he has developed another blood clot in his groin.

So my questions are just, does any of this sound remotely optimistic or familiar to anyone? Is this the best chemo? And last, what kind of foods can we get in him...We just want to hear from people who have been through this before...

Thank you for reading this...I am slowly coming to terms with all of this, but I would give anything just to dance with him on my wedding day..