Very High Bilirubin

Hello all,

This last 4-6 weeks or so my husband had 2 stents and an external drain placed in order to try and decompress his liver.  His common bile duct is clogged with tumor, so the stent they tried did not drain.  They placed a metal stent to drain the left hepatic duct, which is working, but the left side remains dilated.  Recently he had an external drain placed on the right, and even tho we are emptying his bile bag everyday, his bilirubin was 14 on Tuesday.  His DF Oncologist explained his tumor may be very diffuse, therefore the drains will not help too much.

So he began his chemo yesterday, Gem/Cis.  He is up against a wall and needs to begin some sort of treatment (inoperable and radiation is not a good choice due to SBRT in fall of 18′ and history of high-dose radiation in that area in 91′ for diff cancer).  We are aware of possible toxicity due to the Gem, they are giving him a 25% lower dose.

My question/curiosity, has anyone experienced neurotoxicity from high bilirubin?  His has been creeping up for awhile, he has tolerated it pretty well so far.  I am concerned of neurotoxicity, which would bring on confusion, memory loss, ect…  Never-mind liver toxicity, which he is being watched for closely.  The last few nights I have noticed he has restless leg syndrome, that’s new.

We decided I would begin FMLA in order to drop some days at work.  I fear he will become confused and I won’t have my Michael anymore.  I want to spend as much time with him as I can.  He may be weak, not eating much, but he still has his beautiful mind.

Any experiences would be appreciated.  I know everyone is different, I’m just trying to navigate thru this.

Thank you, Christine