New to the boards after reading a lot recently

Hi,
I’m in a frustrating position at the moment. I’m sure most, if not all of us here, are in similar straits. I just wanted to introduce myself and see if I could get some insight and support.

Last January I had an ERCP upon returning to Madison (WI) after a business trip. About a week later my GI called me in and told me my FISH tests were positive for CCA so he referred me to UW Hospital in the hopes that I could get into their Mayo Protocol for liver transplantation. I got accepted and spent most of last year jumping through the hoops of the protocol. I went through chemo, radiation (no brachiotherapy as my tumor wasn’t seen, it hid mimicking the look of progression of PSC), throat ultrasound, exploratory lap, everything and then sat on the transplant list for 6 months.

In October (11th) of last year I got the much needed transplant and everything seemed to be fantastic. I was sitting up less than 12 hours post tx and up walking 24 hours after tx. Life was good. They had found the tumor in my old liver but had a 2.5 cm break from there to where they cut out my old one and put in the new one so everyone felt very confident and I felt as though I had dodged a bullet.

I spent 3 months blissfully getting back to work full time and feeling more energy than I had felt in a very long time. As I’m sure you all know PSC can wear you out pretty badly.

Then, I went in for my 3 month checkup at transplant and the wheels started falling off. My CA19-9 had doubled (or more) and it continued to go up over the next few months. I started feeling a bit more pain and more fatigue and all the while my CA19-9 kept going up and up with no explanation.

I went through an MRI, chest CT with and without contrast and finally a PET scan. Then, the following week I had yet another CT done. I hoped that the lack of evidence meant that my score was going up just because of dehydration or bile flow issues as I know both of them can cause one’s CA19-9 to increase.

They found a hot spot on my PET scan and CT but it looked small. I wasn’t too worried but I wanted them to be agressive so I went in for a needle biopsy (knowing the risks and having talked over them with my transplant team here at UW). While in for my biopsy the ultrasound showed that it was likely in or near my bowels so they clearly couldn’t get access to that with a needle. Just too dangerous.

By using fusion imaging on my CT and PET the doc pointed out another slight hot spot (7mm or so) on my omentum. She biopsied that. Wow that hurt. But I still felt confident. I played it off thinking it would be fatty tissue. When I called to get results yesterday I found out it’s malignant.

My whole world is now upside down. I am starting IV and oral chemo Monday morning. Is there any hope for me? 3 months ago my wife and I finally felt like we could plan things 5 to 10 years into the future. Our entire 10+ years together we had never had that chance before because I transitioned from UC (for 10+ years only controlled by prednisone) to PSC to suspected CCA to the transplant.

Is all hope lost?

Thanks for listening.

-leo