Hi there

Hi Everyone…I’m super thankful to have found this online community and share with others who are experiencing similar things. I had never heard of Cholangiocarcinoma until my mom was diagnosed in January 2014, since it is so rare not a lot of people quite understand this, I am so grateful to have found this group. Thank you for letting me share!
I am an only child and it has just been my mom and I through my whole life (I’m 30 now). We have a wonderful family and my husband and her brother and sisters are right by our side too. My mom who is 62 was diagnosed with CC over a year ago. Her doctor found two large masses in her liver one on the right side about 10cm and the other more centrally located between the two lobes which is about 8cm. She started chemotherapy, Gemzar and Cisplatin. About two months into it, she had a saddle embolus, was hospitalized and started her on blood thinners. It was truly a miracle she survived! About a month after that, her body was just having a really difficult time with the cisplatin and she wound up in the hospital again, so her oncologist stopped that chemotherapy regime. He then started her on oral Xeloda. In the mean time we went down to USC to meet with Dr. Selby, a liver surgeon, who could possibly remove the tumors. He said the one tumor on her liver that was pressing on her diaphragm would be easy to remove however he wanted to see if the centrally located tumor could shrink because the centrally located tumor is surrounded by lots of blood vessels and would be extremely tricky to remove.
I was married in June so her oncologist wanted her feeling as wonderful as she could, so she stopped the Xeloda right before the wedding and gave her lots of steroids. She says it was the best day of her life! It was mine too, because my mom was able to be there and walk me down the aisle!
In August, her oncologist told us down to go to UCLA to see Dr. Busitil and hopefully he could remove the tumors, or at least the large one which seemed to be causing most of the pain and discomfort. After waiting about 3 1/2 hours, he came in looked at her and said he didn’t believe she had CC, but that she had nueroendocrin tumors. He wanted to see the original tissue biopsy and then he’d see us again. In the meantime, my mom’s oncologist stopped her on Xeloda because it wasn’t working like he wanted it to, so she had a break from chemo. In September, heard from UCLA, saying the original diagnosis of CC was correct and they wanted her to have an MRI as well as get cleared from surgery with the UCLA heart doctor. We were so happy! Even if they were only able to remove one tumor as least one would be out and we could try to control the central one for as long as we could. The larger tumor causes her to hiccup, have severe should pain, and general discomfort. When we were waiting for the Dr. to come in and talk to us, a fellow of Dr. Busitils came in and told us the doctor would not be in to see us (even though we just saw him in the hallway) and he would not be operating. My mom’s tumors had grown too much and we would have to go back home and figure out what to do. There was no kindness, respect, or compassion. It was an extremely difficult ride home to Santa Barbara, however the next day when we saw my mom’s oncologist he said do not worry! Sometimes when one surgeon will not operate, the second one will with great success! We love our oncologist, who is so hopeful.
A few weeks later we saw a local surgeon, who was so kind and gentle with my mom and my family. He told us my mom’s tumors were inoperable. Even if he just removed the easier one it wasn’t worth it. It would be too much pain and recovery. He said the centrally located tumor had grown into more blood vessels and just couldn’t be removed. It was a very sad and tearful appointment, but we weren’t giving up hope!
A couple days later we noticed my mom was a little bit yellow… her oncologist got us in right away and she was jaundiced. She was hospitalized and they put in a stent and he also started her on a new chemotherapy, Folfox.
In early December we received a phone call from Dr. Edward Lee at UCLA who does a treatment called Y90, where they inject radioactive glass beads into the tumors to shrink them. My mom began this treatment down at UCLA in late December and just finished her last Y90 treatment in February. We received her MRI back and while it takes a few months to really see progress, one tumor showed about 1cm of shrinkage, whereas the centrally located tumor looked as though it grew a tiny bit. My mom’s oncologist decided to start her back on chemo, Gemzar and Paclitaxel. Both Dr. Lee and my mom’s oncologist think this will help the tumors continue to cook and shrink. We want them to shrink so my mom has a quality of life that is good and where she can live life and not be in constant pain. We are praying for a miracle and that they shrink enough to where they will both be operable and then cured.
My mom has lost a lot of weight, is in lots of pain, and no appetite. She is amazing, hardly ever complains, and it is an honor to be able to love and her care for her during this. It is horrible seeing someone you love suffer.