My Husband and Cholangiocarcinoma

My husband Tom was diagnosed with Cholangiocarcinoma in March 2008. On June 16, 2008 (after walking our youngest daughter down the aisle at her wedding on May 17) he underwent a left lobe liver resection. The doctors removed about 3/4 of his liver. He developed a bile leak and had an external drain tube for 7 1/2 months. He also had a 2nd drain tube for about 3 months because he developed a pocket of bile behind the liver.

In Feb of 2009, after the bile leak stopped, the doctors kept telling him he was cancer free. No chemo, no radiation. We had a wonderful spring and summer and fall in 2009. We did our annual fishing trip to Canada in September and things were looking much brighter. Tom went deer hunting on the October handicapped deer hunt in Wisconsin and got an 8 point buck, a doe and bambie (need I say more on that?)

On Thanksgiving day, 2009 I thought he looked slightly ‘yellow’, but poo-pooed it telling myself that I was looking for a worse case scenario…Two days later when we went for breakfast with friends, I asked my girlfriend if he looked yellow to her. She agreed. Later that day, I took him to the ER, blood work was done, and a CTSCAN revealed a 2.5cm tumor in the remaining right biliary tree.

A visit to the VA Hospital in Iron Mountain Michigan on the following Monday where he was told to ‘go home and get things in order’ and ‘6 months’. That visit was followed up on Tuesday to a visit to the ER at Marshfield Clinic in Marshfield Wisconsin (That was the fastest way I could think of to get into see a oncologist at the Marshfield Clinic). Two days later we were back at Marshfield to see the oncologist. She agreed that the tumor was inoperable and that we could try chemo and radiation… Tom’s bilibrubin level at this time was about 7.

We did a follow up appointment with the doctor that performed his original left liver lobe resection, at the VA Hospital in Milwaukee, Wisconsin. She did agreed that because of were the tumor was (right smack in the middle of the Biliary tree, involving the main interhepatic blood vessel and the bile ducts that it was inoperable. She disagreed with the oncologist at the Iron Mountain VA hospital however. She said that with Tom’s ‘fight’ and with my ‘fight’ if anyone was a candidate for radiation and chemo that Tom was it.

Because of the external drains that Tom had after his original surgery, he was very against having another drain tube. However his bilirubin level was climbing higher, and she strongly suggested that a drain or a stent was necessary.

Back to Green Bay to the Vince Lombardi Cancer Center at BayCare Aurora Hopsital. Dr. Ravi Kondavitti attempted an ERCP to stent the liver bile duct but he did not have a long enough stent to do the stenting. During and ERCP the longest stent that they can use is a 13cm stent (Because of all the twist and turns a longer stent will kink). The tumore is 14cm and in order to stent it they need about a 16cm stent.

Two days later Dr. Dempsey attempted to place a stent by entering the liver from the outside chest wall. The bile ducts were so ‘balloned’ with bile that he could not see a clear path. An external drain was placed. Two days later another attempt to place a stent was made. It was a no go. Three days later, a dual procedure was attempted, Dr. Kondavitti went in via the ERCP method with his wire, and Dr. Dempsey went in through the chest wall. Their wires were about 1/2 inch apart. Again a no go. Dr. Kondavitti’s wire went past the tumor but into a very small bile duct to the back of the liver where a stent would do no good. Bilibrubin level was now up to 13.

Radiation treatment started. Bilirubin still climbing. After three weeks of radiation, the decision to replace the drain with a larger drain tube was made. Dr. Dempsey again tries to stent the liver, but can’t get past the tumor. The larger drain is put into place. Bilirubin is 24.7 (three days ago)…

I think we need a miracle. Lucky thing is that Tom has no itching, no brain confusion. His only side effect is that he is loosing weight and he has swelling of his feet. He is still eating fairly well, still has a sense of humor and still loves me!

I’m not certain how much longer he can go on, but we’re trying to KICK THIS CANCER!

Tom is 62 years young. We were sweethearts way back when I was 17 and he was 21. We both went our seperate ways, married other people and found each other again and were married on Feb 11, 2001. We have six children between the two of us and 13 grandchildren in total. My youngest daughter (the one he walked down the aisle at her wedding) had a permature baby boy who weighed in at 2 lbs 9.2 ounces is my husbands little namesake and buddy. His name is Thomas after his Papa!

I’m hoping to get some inspiration from others who are fighting this terrible evil type of cancer.

God go with all of you!
Keep KICKIN that Cancer.

Margaret, Tom’s cargiver and loving wife.