Topic: Results of 4/8 PET Scan
I got some not so good news on Friday and am still trying to take it all in. It seems it's always one step ahead and two steps back with this disease. It's very discouraging and though I'm trying to stay positive I'm finding it very difficult to do so. Overall, I'm do ok - just have some bowel/gas issues which seems to be from the surgery on 3/25 (details below).
My PET scan on 4/8 is showing that the tumor in my bile duct in my liver has grown considerably and the tumor that was dormant (more details below) is showing some activity again. They are still going ahead with the SBRT. They will hit the older tumor with a lower dose of SBRT and the new tumor with the higher dose as planned. They are still saying surgery is not an option for me because the tumor is on both sides of the bile duct in the liver and they would have to take too much of the liver and I would need a transplant and I'm not a candidate for a transplant. In March I was told this is intrahepatic cholangiocarcinoma - Stage III (lymph nodes were involved). Now the radiation oncologist is also saying possible klatksin tumor (along with intrahepatic) because my tumor is at the junction of the bile ducts outside the liver and then goes into the liver. I'm still trying to understand this all!!!
I'm sorry this is going to be a long post as I want to re-tell my story to see if anyone can provide any insight for me to help deal with this.
As I mentioned in my first post, when I joined this website, I was diagnosed with adenocarcinoma - unknown primary in August 2011. The tumor they found was wrapped around my celiac and hepatic arteries. After two biopsies (at two different hospitals), it was determined that the cells that were found in the tumor are usually cells found in the pancreas or bile ducts. However, both areas were coming up clean with every CT and PET scan. That was until February of this year when I had a PET scan and MRI. That's when they saw the primary site - in my bile duct in the liver and re-diagnosed me as Intrahepatic Cholangiocarcinoma - Stage III (because lymph nodes were involved).
Treatment in Oct-Dec 2011 was 5-FU, oxaliplatin and leucovorin together for 4 cycles (went home hooked up to 5-FU for 3 days each cycle). Then in Jan-Feb 2012 I had 28 radiation treatments. That's when it seemed like the tumor was dead but what they called, at the time, a regional spread showed up running along the portal vein. So in May-Oct 2012 I started chemo again - same as above but 8 cycles. That didn't help at all so in November 2012 they started me on gemcitabine. Was suppose to be one day a week for three weeks then off a week and back on again. I wasn't able to get full dose because my counts kept going down drastically. I continued on gemcitabine until January of this year. Then on 2/14/13 I had the PET scan and MRI and that's when they saw the tumor in the bile duct in the liver and decided on stereotactic body radiation therapy (SBRT). After several doctor appts and surgery (3/25/13) to have mesh spacers put in to push my stomach and small intestine back so the radiation only hits my liver - also had fiducial markers (gold seeds) inserted in the tumor to help, more accurately, guide the SBRT, I am scheduled to start SBRT on 5/8/13. It will be 5 treatments - Wed, Fri then Mon, Wed, Fri the next week.
I'm being treat at Memorial Sloan Kettering in NYC.
Any advice anyone can give me would be much appreciated.