Rock_Robster wrote: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.
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.
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).
Rock_Robster wrote:Just so I’m clear on the inference - your suggestion is this might not be Gilbert’s but potentially something more sinister? It’s a relatively easy blood test to confirm Gilbert’s, so perhaps that’s worthwhile having done.
When you say this may have limited my options to conventional treatment in ‘several ways’, are you referring to beyond qualifying for clinical trials?
roadrunner wrote:My sense is that while you are realistic about the challenges you face, you are doing everything reasonably productive to gain time, and perhaps even eventual victory over your disease
beach sunrise wrote:Good you now have a clear dx. I haven't looked it up yet myself but do you know how to tackle it yet?
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