Topic: My dad has intrahepatic cholangiocarcinoma

Hi everybody,
I've just found this website and I'm happy I can talk with you and give and take some advices.
I am Laura, I'm Italian and my dad was diagnosed with intrahepatic cholangiocarcinoma 2 weeks ago. We are all under shock, even because he had no pain, so suffer, and just with common blood test we saw there was something strange.
Now he's having chemio, but I do not if it is the right cure.
Some people say the only way to defeat intrahepatic cholangiocarcinoma is nanotech or stem cells...
I don't know what to think or what to do... It's the first period, only 2 weeks are passed from the diagnose and now it's just shock...
The first thing I have done is given him a psycological support, and now he is cured with the EMDR tecnique.
I hope I can talk with you sometimes.
And sorry for my english....I am italian!

Re: My dad has intrahepatic cholangiocarcinoma

Dont worry about your english. We can understand what you are saying. I can offer no advice on treatment. I had surgery and now am just sitting with my fingers crossed and hoping for the best, so I have no experience with other treatments. But you are right to come in and post and ask questions. Someone usually will come along and answer your question and point you in the right direction.

The shock does go away somewhat. Though not completely. Who ever thinks about their bile ducts? Much less cancer in them. I was diagnosed in December and I still havent quite come to terms with it. The shock is normal. You are doing the best you can for your father.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My dad has intrahepatic cholangiocarcinoma

Hi Laura,  Sorry to hear about your Dad.   Cholangiocarcinoma to put it mildly is a very terrible type of cancer and is considered not curable but is treatable with surgery, radiation, chemotherapy and other methods to include herbal treatments.  Unfortunately there is no case that is the same with the same results.  A lot of factors come in to play i.e. location of cancer, is it resectable, how advance when it was found, how you respond to different treatments, is it in more than one location.  The list goes on.  Not knowing any specifics I can't really give much advice right now except I believe and have hope that a cure will be found soon.  There is a lot of research going on.  Laura, cholangiocarcinoma can be of a low grade or high grade type.  Those people with high grade usually don't do very well and succumb to this horrible disease in a relatively short time.  What is a short time?  Is again an individual thing taking in all the factors involved.  People from time of diagnosis have lived a few weeks , months, even years, it is so individualized.  I will say and have learned not to take the standard statement that some doctors say 6 -12 months.  A positive attitude and a willingness to fight and be open to trying new treatments is one way to look at it.  Some people are so advanced with the disease and choose no treatments and just recieve pallative care.  Myself, I've had surgeries, radiation, and several types of chemotherapy.  I have fought this monster for over 8 years and still pushing.  It comes down to an individual choice of quality versus quanity of life.  Some can deal with side effects better than others.  I believe in getting second opinions when it comes to surgery as if resection /removal of the cancer can be provided considerable more time is the outcome.  The thing is cholangiocarcinoma is considered a systemic cancer and can float around and pop up almost anywhere at any time.  Laura, Fell free to look through this site as there are many people who have and are trying different treatments and there has been some successes.  Fell free to ask what ever question you may have.
Love, Support, and just being there is what your Dad needs now.
God Bless you and your Dad and hope you have positive times ahead as it can be a roller coaster at times.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My dad has intrahepatic cholangiocarcinoma

Thanks everybody for the support, I really appreciate it and need it!
Yesterday doctor gave us some chance...the first good news. Cancer marker are going down and even liver blood test is getting better. I really hope the chemio is doing its job, so maybe he could be operate, as it is not possible right now.
A big thanks and hugs to everybody.
Laura

Re: My dad has intrahepatic cholangiocarcinoma

Dear Jeff,

Were you diagnosed with intrahepatic CC?  I didn't think anyone with intrahepatic CC lived more than three years.  That is very encouraging news.  My husband has intrahepatic and a separate esophageal cancer that has spread to his liver.  They think the esophageal may be gone at this point.  He has had 10 rounds of chemo.  He will have his second scan in August.
Always looking for new answers...
Laura

Re: My dad has intrahepatic cholangiocarcinoma

Dear Jeff,
I have a question about your statement that there is low grade and high grade CC.  I have never heard that.  How do they determine if you have low or high grade?

Laura

Re: My dad has intrahepatic cholangiocarcinoma

Hi Laura,  According to my reseach 5% of people with Ihcc surive past the 5 year mark.  As far as low grade vs high grade it is very scientific and would be a blunder for me to explain.  Just Search Low vs High grade Cholangiocarcinoma and you should get enough sites to weed through for an explanation.  It has to do with different cell receptors present or not and how high or low certain serum levels are in individuals. Although I don't think most pathologist go that in depth and usually disease progression determines grade and as it further advances the grade can certainly change to higher.  As far as intra and extra from what I understand can become one of the same as disease progresses.  Primary reason is that Cholangiocarcinoma is systemic and could mets to any locations of the body.
I am not a doctor and don't want to tell you something wrong.  This is the picture I have painted in my mind.  I will be starting my 5th different chemo regimen 30 July.  Will be trying Taxtoere once every three weeks.  Not normally used for CC but some recent trials have shown  some complete responses and partial responses, low percentages but will give it a whirl.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My dad has intrahepatic cholangiocarcinoma

Hey Jeff:

Is your comment "according to my reseach 5% of people with Ihcc surive past the 5 year mark based on people that had resection or just treatment.  That is so scary and hope and pray the odds are higher.  Thanks for all your information on this website.

Nancy