My Mom’s Story – ICC

Hello,
I have been visiting your website for information since my mother, age 72, was diagnosed with Intrahepatic Cholangiocarcinoma in January 2013, as an incidental finding. I feel it time to share her story.
My parents are a very healthy, active couple and just after last Christmas 2013, my mom was feeling very run down. She had severe back pain at night and she began to lose feeling in her right foot and was soon not able to walk on her own. She went to the local hospital and they said she had a stomach bug. On New Years Day, she was continuing to get worse, so my dad took my mom to another hospital where they did a CAT scan and found multiple lesions on my mom’s liver. They assumed that there must be a tumor pressing on her spine causing her to not be able to walk.
They rushed her by ambulance to Mass General Hospital in Boston where they performed many tests over the next week, including a biopsy, 3 CT scans, 4 MRI’s, a colonoscopy, ECERP, spinal tap and they determined that there were no additional tumors but confirmed multiple lesions on her liver. My mother was continuing to get worse and she lost all feeling, including all her reflexes, all the way up to her mid abdomen. She was finally diagnosed after a week and a half with a syndrome called GBS – Guillian Barre Syndrome, which is when your body believes it is fighting a virus but instead of attacking a virus it begins to attack your nervous system. A day later, they had a second diagnoses, the incidental finding of Intrahepatic Cholangiocarcinoma, non-resectable. They determined neither diagnoses were connected to the other. They told us she had 2-3 months without any treatment and with chemotherapy treatment about 1 year. We were at a loss.
My mother was essentially paralyzed and we tackled that first. She had the treatment for the GBS and thankfully it began working. By mid January, my mother had been moved to a rehabilitation hospital and we finally met with her oncologist from MGH, Dr. Jill Allen She determined that her treatment would consist of Gemcitabine, (Gemzar), three weeks on and one week off to begin the end of January. Her oncologist chose that course of treatment because she wanted her nerves to begin to heal and repair themselves. We were nervous, but knew it was the best option we had. We also introduced many vitamins to my mothers routine including Milk Thistle, to aid her liver to remove toxins, vitamin D, Ginger for nausea (taken 3 days prior and 3 days after treatment), and Tumeric Curcumin. My mom continued her treatments and her tumor makers steadily decreased with just the Gemzar. She came home from the rehab hospital mid April and continued to work hard to be able to walk again. By the summer, she was continuing to respond to her treatment with decreased tumor densities and falling markers and was walking with no assistance by August. She finally began to feel like herself again. We also went for a second opinion with Dr. Thomas Abrams from Dana Farber and he agreed to the course of treatment for my mom.

In November, she had a port placement and had a complication where her lung was punctured. Since then she hasn’t truly had a full round of her chemo due to low platelets and neutrophil numbers over various weeks. Also in mid November, her tumor markers showed an increase. My mom was scheduled for a scan on December 19th and the results showed four of the tumors have shown small growth, so Gemzar has run its course. We were very lucky the GEMZAR had worked for that long.

Now our options consist of the next line of treatment which is FOLFOX or another option is my mom may be eligible for the clinical trial at Mass General with CABOZANTINIB. We are leaning towards the trial and feel we will still have the FOLFOX fall back on.
My mom is asymptomatic in regards to the ICC. Any ideas or information that may help us decide would be much appreciated.

Sorry for the enormous text body but felt all the info was needed ☺
Thank you