April 6, 2013 at 8:56 pm #70584aticonParticipant
As to pain, her pain level immediately after neurosurgery yesterday was a 10+ on the 10 scale. (She had all 5 of her children without anesthesia and has an incredibly high threshold…had been managing it for the bone mets during the prior 2 weeks with just 3 Advil a day, if that’s any indication). She was given hydromorphone (Dilaudid) yesterday after surgery, having received some morphine just prior. Then started to feel nauseous so was given something else for nausea. When I left the hospital last night after 2am her pain was down to a level 5, though she didn’t think she could sleep with it that high (and didn’t, largely due to the oxygen machine beeping continuously throughout the night). Spoke with her this morning and her pain is managed now with no nausea, so that’s clearly good. Expect to go back there to visit in a couple hours; she won’t be released until Tuesday or Wednesday (5 days inpatient at St. John’s…thank heavens for insurance).
Regarding pain prior to all of this, she’d been walking around the house with a heating pad on her abdomen, and had chronic neck/shoulder pain (which we can now attribute to the liver tumors, and her diseased C4 vertebrae which the neurosurgeon said was so soft, it was like the inside of a bagel (his actual quote, however unmedical – lol).
She wants to be aggressive with her treatment, and has the most amazing upbeat, positive, optimistic, no fear attitude. She has an incredibly strong faith, and I know this is all helping her carry through (…mind/body connection). Her optimism is humbling. I don’t have a fraction of her strength; I’ve cried myself to sleep every night with all this.
I ordered 25 CC bracelets from the Foundation and now everyone in my family is sporting them in solidarity for her.
Hoping, praying, caring, trying….we’ll do anything we can for her. Thanks, all.April 6, 2013 at 8:34 pm #70583lainyParticipant
Dear Aticon, Welcome to our extraordinary family, and know you have come to the right place! Wow, where to begin. First of all Mom’s ONCs are doing a good thing by consulting with Dr.Javle for another opinion, as you may have read we are big believers in 2nd, 3rd, 4th opinions. Your Mom sounds like quite the warrior and UCLA is good, so those important things are being done. I have never heard of Lynch Syndrome, sorry. I feel with your family history it would put a lot of your minds to rest by being genetically screened. Yes, what Mom is going through IS heartbreaking, scary and sad but I feel you are doing everything possible that you can. Is she in pain now? Wish I could tell you more but others will be along who can perhaps help more on the treatment part of it. Be as strong as you can and try to be upbeat around Mom as attitude can help a lot and please do keep us updated as we truly care.April 6, 2013 at 8:06 pm #8206aticonParticipant
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.
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