Hello to all

My name is Karen and I am a 50 yo woman just diagnosed with IH CCA. I went to the ER with severe pain in my right side after experiencing what felt like heartburn for a couple of weeks. An abdominal CT revealed numerous lesions on my liver – the largest of which is 7 cm. The pain was bad enough they hospitalized me to find a proper method to manage the pain and while admitted, I had a liver biopsy and additional bloodwork and other tests. The biopsy confirmed adenocarcinoma. My CA 19-9 was 19600 on first test and 4 days later had increased further to over 28000. My pain was finally controlled and I’m taking 20 mg of Oxycontin twice a day along with 3 doses of Gabapentin. I am functioning mostly normally now but odd things like hiccups or laying flat or leaning too far in any one direction tend to send stabbing pains into my side (they tell me that’s due to the masses in the liver).

My doctor stated that I had CCA but I have yet to read anything in the clinical notes (I’m at Mayo Jacksonville and have access to all my records/scans via the patient online portal) about staging etc. He mentioned getting me to participate in a clinical trial when I first saw him while in the hospital and gave me a packet of forms, but 3 days later when I got out of the hospital and went to see him for my first outpatient meeting/followup, he informed me the last spot had been filled. I was told that it was an intrahepatic type and further told that I had no options for surgery, radiation, or basically anything other than Gem/Cis chemo. He further stated that “when” that stopped working, there were “a couple” of different options to try to see “if” they might work and basically, if/when I found something that would work, the definition of working was simply a regimen that stabilized disease progression. “If” I was lucky, I’d find luck with each chemo that was tried until – one-by-one – each thing stopped working until all options were exhausted. The broad time frame he gave me was “approximately 1 year” and maybe 2 if I was lucky. I was told that the liver mets were the big problem and they would prohibit any course of treatment other than the standard protocol of Gem/Cis.

So many of you have provided info on staging, specific physical location of your source tumor location, etc. I don’t have any of that and it seems like I’m just being given a “standard” song and dance. I’ve heard very favorable things about Mayo (mostly in Rochester though) and I know my Jacksonville doctor has sent tissue samples to Rochester for molecular profiling/genotyping and for FISH break apart probe for FGFR2 fusion protein (although I don’t know exact what this is…I have a basic idea but not the breadth of details).

I’m feeling like since the spot in the trial (which my doc is participating in) closed, that I’m being swept into the “nothing special” bucket and offered nothing more than, as I mentioned above, the standard spiel. I’ve read a lot (primarily from this site) and still fill ill-informed although I understand things in a general way. My diagnosis feels so very ominous and grave and it’s as if a loaded and cocked gun is being held to my head by a 2 year old.

I was told that I need to start Gem/Cis next week (i.e. ASAP) but I have decided to wait at least one more week and go get a 2nd opinion from CTCA in Atlanta. I have read much about their holistic, interdisciplinary approach and, since it’s relatively close to me, thought I’d try there for another opinion. I realize they may confirm what I’ve already been told, but even if they do, I need to hear it again and feel as if I’m more than just another hamster on the wheel.

It’s as if I am floating about 3 feet outside my body watching everything happen. I’ve had a few tears, but have found that I mostly have been consoling my partner, my mother and other family members more than truly feeling what I feel. I feel numb mostly so it’s just easier to focus on everyone else other than me it seems.

My diagnosis comes 8 days after my father passed away from Parkinson’s Disease and 4 months after my younger sister (age 43) died after a 4 year battle with neuroendocrine carcinoma that had metastasized to her liver (among other sites). My diagnosis is just too much on top of what I and my family have already been through and I’m so tired of death that I can’t express it adequately enough.

I’ve been saying “I ain’t dead yet!” (in my best east TN hillbilly voice….I’m from east Tennessee originally) and I plan to do everything I can to kick this crap right between the eyes. But I know I’m going to need help. That’s why I’m glad to have found this group and look forward to getting to know you and to ultimately be able to give and help others who have found or will find themselves here.

Any info, stories, encouragement, etc are kindly appreciated and I will give my thanks in advance for your support and kind welcome to the group.

Kind regards,
Karen