Daughter of Newly Diagnosed 58yo Mom

Hi all ~

Two weeks ago, my healthy and beautiful 58-year old mother of 5 children (ages 22-33) was diagnosed with Stage IV cholangiocarcinoma with mets to her liver, bone, lung, and lymph. We’ve been told that neither resection nor liver surgery are possible due to tumors on both lobes, though I wonder if this is really true given the liver’s ability to regenerate, and given her strong underlying fitness and health baseline (discussed below). Also clearly not a transplant candidate given the Stage IV. When a scan early this week revealed more bone disease than originally thought, she was rushed into an emergency night-time MRI, and the next day scheduled for neurosurgery to remove her completely diseased (and fractured) C4 vertebrae and surrounding discs, replacing them with a titanium cage to which the C3 and C5 will ultimately fuse. This procedure was successful yesterday, though during it her esophagus incurred a tiny puncture which received 2 stitches so she can’t eat or drink for 5 days (currently 115 lbs., 5’4″). Once she recovers from this (2+ weeks?) she’ll start a traditional front-line chemo course for CC. (Likely the 2-drug combination of Gemcitabine + Cisplatin (Gem/CIS) though discussions are also being had over FOLFOX, and 5-FU). One oncologist suggested only palliative care for containment and pain-management, and the other suggests an aggressive “all out” approach to try and kill all the cancer, though all have been careful not to use the word ‘cure’. One of her several UCLA oncologists (this one specializing in hepatology and biliary issues) is consulting with Dr. Javle at HDAnderson in Houston, and they’re discussing treatment options. She may simultaneously have radiation to treat some additional bone spots in her thoracic and lumbar regions. Pathology reports, MRI’s, PET, CT, upper endoscopies, barium imaging, x-rays, etc. have ruled out the usual primaries (breast, brain, lung, liver, colon). Belief at this time is that the primary is either CC, or it may fall into the range of “3-4% with undiagnosed primaries”.

We’ve recently learned that she was accepted into an anti-PD1 trial, which is not chemo but leads the immune system to fight the cancer. Tissue samples from 2 separate liver biopsies and the C4 vertebral tumor are also being sent to GenenTech and the Caris Foundation for evaluation.

Interesting family history background — Her father was diagnosed with Stage IV colon cancer at the age of 58 (same age of her current diagnosis), with mets to his liver and lung. He died from these complications at age 59 1/2. His cancer was treated with 5-FU, one of the same chemo’s they’re considering for my mom’s treatment today, 23 years later. (Is this really the best course? Had medicine not advanced beyond this in 23 years?). It has been suggested to us children that we be genetically screened for Lynch Syndrome, and/or request routine PET scans in our mid-thirties onward for early identification, should anything exist. So far, the apparent trend with my mom and her father suggests a genetic predisposition, though his parents lived into their 80’s on both sides (both dying of heart issues), her mother is still alive, and her 2 brothers (53 and 55) have no known issues of this nature though are pursuing testing at this time. Any known links with Lynch Syndrome and CC diagnosis? So far, doctors are mixed on this.

She has maintained a gluten and dairy free diet, takes many herbal and other supplements (including recancostat currently), avidly exercises, has utilized acupuncture and chiropractic throughout her life, and has always been proactive about her health and wellness (colonoscopies beginning at age 35 – always clear, etc.). No routine preventative exams revealed any of this; there were no liver enzyme spikes, or other abnormalities. She discovered a lump in her stomach during a Pilates class 3 weeks ago, and her PCP referred her to a specialist which revealed the lump to be liver tumors. Here we are today.

I guess what I’m looking for from this board are tips, suggestions, advice, help, support, cutting-edge treatments, research, or any other things people who have loved ones with this rare cancer typically seek. I’ve never done this before and it’s heart-breaking, scary, and sad. I’ll continue to post updates and her treatments, procedures, etc. in case it’s of interest or help to others out there. Thanks and best wishes for health to all.