PSC and Cholangiocarcinoma

July 8, 2007

Thank you all for sharing your experiences and challenges. It helps to

know that there is support for those fighting PSC.

I posted shortly after I was diagnosed with cholanciocarsinoma (bile

duct cancer). I had no idea what that would mean for me and my family.

Our world has been shaken up and I have discovered the immense

goodness of friends, relatives and neighbors. There are angels among

us and they don't even know it.

I am being treated at the University of Utah/Huntsman Cancer Institute

in Salt Lake City. The care has been amazing. I have 5 different

doctors and each of them have patiently answered my questions. The

treatment that I have chosen is part of a clinical study based on a

similar study at the Mayo Clinic. The Mayo results increased the 5

year survival rate from 2o percent to 82 percent.

The treatment involves treating the cancer with Chemo and Radiation.

Followed up with liver transplant.

I have had a barrage of tests and preparation getting ready to start

the cancer treatment. I have been approved and listed for a liver

transplant.

I have had PSC for over 13 years. The current treatment of Urso has

helped maintain my liver function. What this means is that my meld

score is very low because my liver function is near normal.

As I understand it the longer one lives with PSC the higher the risk

for cholanciocarsioma. The cancer is rare and treated mostly by

removing the bile ducts with cancer. It is a viable option for someone

without PSC. With PSC reoccurrence is likely because of the damage to

the bile ducts.

Here is the catch. I have a low Meld score, but If I wait for the

cancer to progress enough to impair my liver function then it will be

too far along to qualify for for a liver transplant.

The clinical study allows for an elevated Meld score for patients with

colangiocarcinoma.

The prospects are good.

My family an I are taking it a day at a time.

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