Hi all, a bit of a cancer-adjacent issue, but thought I’d share my experience and also see if the group mind has any advice for me.
Throughout my 4+ years of treatment (including a lot of liver-directed therapy), my bilirubin levels have never really been an issue. However over the past 6 months or so my total bilirubin has shot up rapidly; sitting around 30-40 mg/dL (1.7 - 2.2 mmol/L in US units), and in the last month has doubled to 60 mg/dL (3.3 mmol/L). Normal upper limit is 20 mg/DL (around 1.2 mmol/L). The thing is - all other liver markers are perfect (no enzyme elevation), there is no concern around obstructive/drainage disorders on liver imaging, and I have no symptoms of hyperbilirubinemia. I don’t have a gallbladder, so presume no risk of gallstones. Because of this, 3 oncologists have separately now concluded that I probably have Gilbert’s Syndrome (and my GP/PCP agrees).
Although it’s a bit strange that it only started to show recently, apparently Gilbert’s symptoms can be brought on by periods of physical stress or injury - eg cancer treatment. It seems to be a fairly common genetic condition (5-10% of males), and generally mild and asymptomatic. The only relevancy raised so far for my cancer treatment is, (1) dosage of irinotecan would need to be adjusted down for my diminished clearance rate, and (2) I would likely need to get an exemption from upper t-bili limits on clinical trials due to Gilbert’s Syndrome (apparently that’s usually recognised by investigators). Otherwise provided my other liver enzymes are fine and I’m asymptomatic, my oncologist(s) are not concerned. It may well be that Gilbert’s is the least of my problems.
However… like everything I’m conscious there’s a lot I don’t know, so interested if folk have any other experiences with this, or recommendations on how to manage.