Topic: Things going from great to horrible seemingly overnight
My father was diagnosed with intrahepatic cholangiocarcinoma in January of 2006 (16 months ago). Resection was attemped (determined to be non-resectable) and during that time, 2 metallic biliary stents (right and left) and an external biliary drainage catheter were installed.
Intensive 7 week radiation and chemotherapy were conducted beginning approximately May 2006. The radiation consisted of 5 day per week treatments and chemo was 5FU (I believe) administered by a carry-around pack that was regularly infused via PICC line.
Around Aug/Sept 2006, the external biliary drainage was deemed unnecessary and was removed. I believe another biliary stent was placed in the right posterior hepatic duct.
Regular CT/MRI were taken every 8-12 weeks through beginning of 2007 with the feedback being "little change" or "the scans don't show much". Additionally, blood tests showed bilirubin levels at 1 to 1.5 and feedback that liver tests "were good."
CT/MRI in April 2007 again brought comments of things look good, and the oncologist seemed pleasantly surprised by the lack of disease progression. Bilirubin at this time did increase moderately to 2.2. Also, in hindsight, my father had very mild fevers (101 or below) on an irregular basis (maybe once a month) during the first part of this year.
In middle of May (week after Mother's day), my father had fever off and on for 3 days and noticeable jaundice. He was admitted to hospital and bilirubin was determined to be in the 10 range. This was a surprise to all of us since things had been going so well (as recently as April, doctors were saying things good for now, no need to do anything). The word we received from liver specialist was that probably just some "sludge" in the biliary stents and that either: a) could be removed; b) additional stent placed to improve flow or c) if neither a or b, then might have to go to the external drain again. As such, we were not worried.
ERCP performed on Friday 5/18 and we were told "things went very well." My father stayed in hospital for 3 more days. Bilirubin level was pretty much flat, but went up a little after the ERCP (about 12). Also, he started having some swelling of hands/fee and bloating of abdominal region. Discharged with: a) anti-infection medication and eventually b) anti-water retention meds. Also, we were told that it was natural for bilirubin levels to stay up for awhile but should come down "in a couple weeks."
We have been back for 2 blood tests since discharge. First test (5/24) showed bilirubin coming down slightly to 11.6. We visited the liver specialist on 5/24. He took some fluid from my father's abdomen and we were told that it did not show signs of tumor (I think that's what he said). Again, he reiterated that bilirubin should continue to come down.
However, second test today (5/29) showed bilirubin elevation to 13.4. Also, Alkaline Phosphotase at 169, AST at 171, and ALT at 75. I grew concerned and emailed liver specialist this evening ahead of our scheduled appointment with him on Friday 6/1. To my huge surprise and fear, the response I received seemed very bleak:
"I am glad that the water retention is resolving, that is why your father is losing weight. He should complete the course of antibiotics and stop. In regards the bilirubin, I would leave it alone. The reason why it is not coming down is because he does not have to many patent bile ducts due to tumor invasion and underlying cirrhosis. I do not recommend another ERCP or a percutaneous drain, like he had before. These procedures will not improve the bilirubin and could cause complications and discomfort, and, most importantly, will not improve his clinical condition. For now, I would continue with the diuretics until the swelling goes away."
I have no idea how things went so bad over the last few days or weeks. Are we being lied to or just constantly being given a rosy picture? Are our doctors giving up? I am considering a second opinion and emailed Dr. Simon Lo at Cedars.