Intrahepatic Cholangio Carcinoma

My husband,age 64, has been diagnosed with a rare liver cancer that is unresectable....he is using the APJohn Cancer CAAT protocal which we do not know at this time is helping.....we have been to Mayo in Mn twice....the first visit we were told he has 6 to 9 mos to live....the second visit they put a stent in his liver to get his bilirubin down which we found out yesterday it worked.....they said he is now a candidate for Therasphere.....does anyone know if this has worked....we are very hopeful that this will be an answer to our prayers....thank you for any info...God bless all of you that are suffering with the thought of losing your loved one.....our faith will see us through this all

 

On 5/5/2007 Neetz wrote:

My husband,age 64, has been diagnosed with a rare liver cancer that is unresectable....he is using the APJohn Cancer CAAT protocal which we do not know at this time is helping.....we have been to Mayo in Mn twice....the first visit we were told he has 6 to 9 mos to live....the second visit they put a stent in his liver to get his bilirubin down which we found out yesterday it worked.....they said he is now a candidate for Therasphere.....does anyone know if this has worked....we are very hopeful that this will be an answer to our prayers....thank you for any info...God bless all of you that are suffering with the thought of losing your loved one.....our faith will see us through this all

 

I can't help with the treatment but wanted you to know I am touched by your words.... thank you for sharing this.  Since I found this site, I can feel the power of others praying for my husband and me, and it is such an unspeakable  privilege to pray for others.  aslan

My husband also has cholangiocarcinoma, they did the stent in the bile duct which worked well, eliminating (for the time being) the jaundice etc. He has a large tumor on his liver, 14 cm approx, involving both lobes and not resecable. He was on a chemo mix that is will not do again, as soon as he gets well he goes in for another iv and is sick for a week. So that is not do-able for him. What next?  Is the bile duct part going to get him first or the tumor growth? What can we focus on as the culprit.? We are looking into other treatments without as many side effects and getting nowhere fast.

Any ideas out there? The tumor is too large for most treatments, and even if they treated the tumor, what about the bile duct area itself...are we only ok as long as the stent doesnt plug up or get too much cancer surrounding it? There is so much info out here I cant seem to find one thing that seems to be workable for him.....its such a helpless road to ride on..

In Oct 2005 I had an mergency gallbladder removal at which time a cancer on the liver was observed.  It was non-resectable and was about 12cm in diamater.  After many tests no other tumours were detected apart from a few spots in the right lung.  In Jan 2006 I had SIRspheres inserted in the liver and since then the main tumour has shrunk to <25% of the volume.

About 2 months after the SIRspheres a PET scan showed a tumour on the left illium.  This was knocked of with radiation.

I then had 6 cycles of gemcitabine plus cistlatin.  This pulled the lung spots back and by August 2006 my CA19.9 level was just inside the "normal" range.  Things stayed that way 'till late dec06.  In Jan06 it was obvious that the cancer was active and growing.  A run of gemcitabine plus 5-FU was tried but with no positive results. The oncologist had said that we would be lucky to get 2 or 3 good runs from the gemcitabine.

A tumour developed on the breastbone.  This was knocked off with one dose ofexternal radiation.   

Three weeks ago I started Nexavar (sorafenib).  In the first 2 weeks the CA19.9 level halved.  I have never had such a dramatic fall previously. 

The side effects with Nexavar (for me) have been tiredness, consitaption and dry skin on fingers and toes.