February 25, 2019 at 9:45 am #98217gavinModerator
Welcome to the site and thanks loads for “delurking” now! Thanks for sharing what is going on with everything for your mum. I am sorry that you had to find us all here but glad that you have joined in and posted now as I know that you will get a ton of help and support from everyone here, Glad as well to hear that when you were lurking that you still got a lot from the boards in terms of support and help too. That is good to know. So to all the other lurkers out there, please come and join us, say hi and know that we don’t bite!!
Thanks for sharing everything that is going on right now and from what you say your mum is going through a lot with everything. You are so doing the right thing in seeking to learn as much as you can about everything CC related as the better informed you are about it all the better you will be able to help your mum. And yes, you are well on the way to your 2nd PHD now! Keep coming back Hannah and let us know how everything goes. You’re not alone in this now.
My best to you and your mum,
GavinFebruary 23, 2019 at 3:39 pm #98203
Thanks for the reply and the understanding. I’ve been reading about you and your husband’s experience and I have my fingers crossed for you both. Dr. Kelley has been a great source of information for us as well!
HannahFebruary 23, 2019 at 12:03 pm #98198sfbaybreezeParticipant
Hannah- Thank you for sharing your family’s story, it really does help to build the collective knowledge base. I know exactly the journey you describe in terms of researching this cancer, my experience (on my husband’s behalf) was almost identical. I hope your mom’s surgery goes well and also her treatment going forward. TillyFebruary 23, 2019 at 9:38 am #98192
I forgot to note – she has had a significant amount of pain associated with the tumor throughout the chemo. This was understandably a major point of worry for my mom especially, but as we’ve learned this pain is likely a symptom of the shrinkage itself – apparently the shrinking tumor is ‘tugging’ at the capsule of the liver. So, lesson from this: reading the ‘tea leaves’ of pain is not a straightforward thing.February 23, 2019 at 9:31 am #98191
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-
- You must be logged in to reply to this topic.