My Introduction

Well, needless to say, it has been an interesting 4 months for me… In early July I started to notice very dark colored urine and just thought it was dehydration, I needed to drink more, right? Then the itching started. Never linked that to liver function. Early August I started to get nauseous every time I ate something and it came to a head the weekend of my son’s Bar Mitzvah. Saw my general practitioner Thursday PM and he advised bloodwork on Friday AM. By noon on Friday, he called and said to get back in, my liver enzymes were way elevated and more bloodwork was done. Saturday after my son did a great job with services, we had a nice kiddush (luncheon after services) and I was supposed to go to the party’s venue to help the wife set up for the party. I went home to change, fell asleep for 3 hours and was extremely nauseous. I called the GP and asked if he had anything for the nausea. His response was to go to the party, don’t eat, but immediately after go to the hospital.

2am Sunday the 28th of August I hit Sarasota Memorial. CT was done, Ultrasound was done, no one could see anything. ERCP Monday afternoon and Dr. Doom and Gloom reported the results to my wife, father in law, cousin, and me. Mass on the bile duct, possible Klatskins tumor, very difficult spot, not much more we can do. The stent resolved the symptoms, and we had to wait for the biopsy results. Wed. PM results were back, atypical suspisious fibrous cells. Now the phone calls start. By Thursday PM, we had an appointment at Sloan Kettering Memorial in NY on Tuesday Sept. 6th. We made arrangements for friends to watch the kids and my wife and I flew up to NY on Labor day. Silver lining: my inlaws have a home on Long Island, we had a place to stay and people to help with driving back and forth.

Tuesday was upon us, we went to the appointment and met with Dr. Matthew Weiss who did my initial workup. Obviously the test results were inconclusive so they had to go in to see what was there. I had resolved myself to the fact that there was no way the mass that was there was going away without surgery, so this wasn’t a big surprise to me. He brought in Dr. William Jarnagin, head of Hepatobiliary Surgery at MSK who suggested surgery. We scheduled it for 9/21/11 and played the waiting game. A cancellation happened and I was moved up a week to 9/14/11.

My brother in law lives in the Hamptons and we went out on 9/10 (Friday) for a visit before the real journey began. I blew a fever on Saturday of 102 with serious chills/shakes and we were in the car making the 2 hour drive to MSK in 1.5 hours. I had an infection at the stent site, IV antibiotics. Long story short, I was in the hospital for 4 days prior to the surgery. Antibiotics worked and I went through with surgery on the 14th.

The official diagnosis was Cholangiocarcinoma. I’m 40, but I’ve read some of the posts on this site with people younger than me so age doesn’t really seem to matter with this thing. Why me? How did I get it? No one can answer…

They resected my liver and removed about 3/4 of it (all of right lobe, half of left), gall bladder gone, all of my bile duct was gone, and about 7 lymph nodes. All of the biopsy results were clean margins everywhere of at least 0.7 CM. The ONLY place the cancer was located was in the bile duct itself, right where it splits from one duct into two just inside the liver. The right lobe was already showing signs of atrophy and the left was already growing into the right to replace the damaged liver, amazing what the body can do sometimes!

My surgical outcome was ideal, they got it all. I was in NY for a total of 2 months. My original drain came out about 3 weeks post op, but I had severe pain on 10/2 and went to the ER via ambulance (LI Jewish was closest) and CT showed an abscess. I was transferred to MSK via ambulance the next day and interventional radiologists put in another drain. I was making about 130 mL a day and as of 10/21 it went to 0. Wednesday the 26th of October they removed the drain and I flew home Tuesday 11/1/11.

You would think that this was it, but no, my liver was still ‘leaking’. Wednesday at noon I had a 101.5 fever and my NY doctors said to get to the ER. By the time I arrived, 102.9 and the CT showed a 5″ abscess. Another drain!! Massive IV antibiotics 3x per day 3 different ones, my vein at the IV site did NOT like this. The germ ended up being Clostridium Perfringens, apparently a nasty bug that lives in the intestines but on exterior wounds causes gangrene. The stuff that drained out was definitely nasty. In the hospital for 5 days and yesterday (8 weeks later) they removed the drain, my leak officially stopped a week ago and Nuclear Study and CT confirmed no other abscess shown and no evidence of leaks. The liver is functioning 100% and the bile flows into the new bile duct (they took a length of my small intesting, cut it, attached one end to the remains of the liver, reattached the other end about 10″ below that and voila, new bile duct).

I’m about to undergo the second part of my journey with Chemo and as of now, Gemzar only but I’ve heard Cisplatin is also a standard of care for CC. I have an appointment with my Oncologist to discuss on 1/6 and 1/13 is the first dose of Chemo. I’ve been told I’m longwinded, but writing this is somewhat therapeutic. Given everything I’ve read so far on this site, I think I’m one of the lucky ones in that they ‘got it all’. There are no studies to show that chemo helps or hurts or if you don’t do it will it help or hurt so I figure better safe than sorry, I’m young and healthy so let’s do it. Thanks for your patience reading this long post. I’ll update as new info is found. Oh yeah, I also win the biggest scar contest from now on too!
Derin