HI, Sara.

He was diagnosed in May 2003 and his first operation was in June 2003.  They just opened and closed him up.  These tumors are behind the liver and difficult to get at.
In addition to being intricately wound around veins and arteries. I thought organs could be lifted out of position but that is not the case.

He started chemo(Gemzar and Xeloda) in July of 2003 and had radiation in September of 2004.  A complication of the radiation was, because of the tumor location it damaged the lower part of his heart and lungs.  But they needed to shoot it from 4 directions and unfortunately organs get in the way.  It also caused scar tissue which affected the pyloric valve where his stomach empties and he needed a stomach bypass to create a new exit into his intestines.

Another down side to the surgery was that 70% of these tumors return in time.  They do not know much about this cancer and it is maddening for the families especially when we hear the strides thay are making in cancer research on more common types.

I wish your Mom good luck with her fight.  I'm always hoping and praying for a miracle.


My husband John( he is 52 years old)... He was diagnosed in May 2003 and was given 6 months to a year to live.   

His tumor was intricately wound around his bile duct.  It was constricting the duct and shutting off the portal vein blood supply to the left lobe.  As a result the left lobe shrunk back.  This was all on the underside of his liver and extremely difficult to get at, which is why they could not remove it without risking his life.  He also needed to have numerous stents put in the right bile duct to keep it open and flowing.

And if they did remove it there is a 70% chance it would return.  There were also about 20 cancer droplets that has fallen down onto his intestines.  They were too small to remove, so they felt chemo would take care of them.

The trial was one which used Gemzar infusion and Xeloda pills.  He had chemo infusion two wednesdays in a row. The first wednesday he would start the xeloda pills for 14 consecutive days.  Then for one week he would be off of everything which gave him time to recover from the side effects.  The trial started in summer 2003 and John and one other person are still alive, miraculously.

John has had numerous CT scans and MRI's.  It was very dificult for them to to get a handle on the tumors because of where they are, which has been a problem.

He always has a pain on his right side next to his hip bone.  This is where the droplets are.  They just did a colonoscopy and found nothing inside.  So, there is probably something developing on the outside.  There is something called a vitual colonoscopy where they can see the outside of the intestines.  But that is down the road.

Most recently he has been jaundiced again.  His bilirubin and other liver enzymes are elevated and he has been able to have chemo only once in the last 6 weeks.  Next Monday he needs to have a PTC line put into the left side of his liver.  I forgot to mention that after the stents failed and a PTC line and bag needed to be put in his liver on the right side to drain the liver.  This in itself creates some complications.

Overall he was been doing better than expected even with complications.  I could not go thru what he has and would have given up a long time ago. 

He saw the oncologist this week.  Because of how he has been feeling lately the doctor told him that at anytime he can tell them to stop any treatment and basically just go on pain meds.  But John is not ready to give up.  I keep reminding October will be our 25th anniversary and I want a party.

Incidently, we were told this cancer is more prevalent in Asia.  Probably brought on by a parasite.  But, we have never travelled there.  So how did he contract this?

He has dodged the bullet for over a year and hopefully he can, no will, beat this.