Oregon family

Hello everyone,
Ok I’m finally posting on this board after months of lurking. Even as a lurker I have found an amazing amount of community here and am so grateful to everyone who shares their stories and posts new research as it becomes available. I’m adding my mom’s story to the mix because even though everyone’s story is its own, I think sharing information can be really helpful.
After experiencing vague symptoms of nausea and weight loss and finally discovering a palpable mass in her upper right abdomen, my mother (62yrs) was diagnosed in August of 2018 with intrahepatic CC and a main tumor of approx. 11x7cm. Her bloodwork has always been basically normal, with slight elevation initially in some of her liver enzymes, no CA-19 measurement at all. She had a failed resection in early September at Providence in Portland OR, where the surgeon found lymph node involvement as well as other areas of concern within the liver. This of course was devastating news. After some frantic hunting for an appropriate treatment plan, she was finally randomized into the control wing of a clinical trial for a TACE treatment (hence, received the ‘standard of care’ gem-cis combo, but we hoped the ‘control wing’ status meant a little bit of extra attention).
Through the chemo, my mom has been very careful about her diet, focusing on getting lots of nutrient-rich plants, grass-fed meat, and whole grains. She has also tried hard (despite chemo side effects sometimes knocking her a bit sideways) to stay active and healthy. Her daily exercise routine involves cycling, lots of walking, light resistance training with bands (her wife is a physical therapist), and because her neutrophils have been a problem, some stair-stepping with weights in an effort to glean whatever small marrow-building benefit might come from impact training. She’s also used some naturopathic and supplementary regimens in order to keep her liver and bloodwork as healthy as possible through the chemo – she’s been taking astragalus (capsules), cornsilk tea, fish oil caspules, vitamins D,E & C, and B12, and on days furthest away from the infusions milkthistle.
Apart from the neutrophils, her main side effects with the gem-cis have been nausea (controlled after some experimentation with zofran), and about 5 days after infusion, a two-day period of increased depression combined with other warning symptoms like numb tongue that let her (and us) know that these are her ‘down days.’
After 6 cycles, which included a handful of delayed doses and one dose reduction (to 80%) due to low neutrophils, she has had a great response to the chemotherapy and her main tumor has been knocked back to 6.7 x 2.9cm, other spots either disappeared or unchanged. Her liver enzymes are normal and bilirubin normal (but it always has been). We took her case to other specialists at OHSU and at UCSF, and thanks to these new sets of eyes on her case, she has been given another shot at the surgery(!!!). We’re going to OHSU for the resection this coming week. We are all acutely aware that we are lucky to have this second chance, although the doctors are all careful to note that the surgery will likely not be curative, given that lymph involvement is so strongly correlated with recurrence. Assuming that the surgery goes according to plan, we’re planning to push for post-surgical therapy on the BILCAP regimen (xeloda).
She has also had the genetic testing, and carries the IDH1 mutation along with a couple of other less-studied mutations. We hope that if we need it, this might be a useful avenue for treatment in the future.
Finally, as a daughter, this has been something of a journey in my own responses as well. In the first couple of months, I could not read or look at anything to do with this cancer. It made me almost physically ill. Sometime after the first surgery, though, I started wanting to read everything I could. I work at a major university, which means I am able to access all the journal articles coming out. My reading has bordered occasionally on the obsessive, but I am increasingly convinced that especially with a rare disease, it is important to be proactive in gathering your own information. I feel like I am getting a second PhD, this time not in a humanities subject but in cholangiocarcinoma.

Strength and positive vibes to everyone out there grappling with this beast-

Hannah