Finally ready to talk about my CC

Hi All –

I was diagnosed with cholangiocarcinoma on January 15, 2015. I was really quite fine in the fall, then Christmas Eve I started feeling bad and had nausea and vomiting. The nausea and vomiting continued through New Year’s. I finally saw my internist on January 5, and he ordered my first CT which I had on January 9. I credit him with saving my life. I’m 43 years old and healthy and had no other symptoms besides nausea and vomiting. The CT revealed a huge liver mass taking over the entire left lobe of my liver and compressing my stomach (causing the nausea and vomiting). He got me in with the hepatologist on Monday, January 12. By then I was so weak that I could hardly walk, so I was admitted for the rest of my evaluation – MRI, PET scan, biopsy. After the biopsy came back with cholangiocarcinoma, I got my port and started chemo with cisplatin and gemcitibine on January 16.

I did three cycles of chemo and got better clinically. I was able to eat more and got stronger and was more mobile, although I still couldn’t be up for more than about an hour at a time because the tumor pressed on my diaphragm and aorta making it hard to breathe and my heart race. My oncologist thought the tumor felt smaller on exam. My liver enzymes and my bilirubin never changed and have always remained normal. We were all shocked when the tumor had not shrunk at all on the subsequent scan. My oncologist is STILL mystified by that because I was clinically better.

I had surgery on March 30, 2015, to remove my tumor. The initial thought was that it would be a palliative surgery because it was so large. However, I have an AMAZING surgeon, and she got it out with clean margins. I had three positive nodes with the rest being negative. My tumor weighed 20 pounds. Both my surgeon and oncologist are thrilled with the surgical resection, and for the first time, they both think I have a shot at beating this. I have an enormous cross-shaped scar over my abdomen because that’s what it took to get the tumor out. Post-operatively, I was not able to tolerate solid food again and lost another 15 pounds post-op before I was finally readmitted at the end of April to go on TPN. However, a CT scan and an upper endoscopy at that time showed no tumor recurrence a month after surgery and about 6 weeks after chemo. My CA 19-9 was 23 (down from a peak around 1000).

My feeding intolerance just gradually got better on its own. I have now been off TPN and eating well for three weeks. I finally feel the best I’ve felt since this started. So, since I’ve recovered from my surgery, my oncologist wants to start chemo again. Even though there’s no great data to support post-operative chemo, she wants to give it every shot because I did get a good resection and am relatively young and healthy. So, next week, I start oxaliplatin and xeloda. We’re going to do three cycles and then repeat a CT and my CA 19-9.

My emotions are all over the place because I desperately want to beat this. I always have even when it looked so grim in the beginning. My oncologist didn’t have me go straight to surgery initially because I was so sick, she thought it would kill me. Still, I’m dreading the chemo starting again because I don’t want to feel bad again. However, I need to take every opportunity to keep this beast down.

Also, I want to beat this because I have three little kids – a 6 year old and 4 year old twins. They need their mommy! That’s my story in a nutshell. I didn’t read a lot in the beginning because I was so sick, and everything I looked at was so bad. Now as I’m hopefully starting to move towards the time of waiting and hoping it doesn’t come back, I really needed to come and read about some others who have made it. SO, thanks for reading my story, and I’ll be around.

Kathy