High bilirubin

[Averagegilbert]

My husband has been on Abiraterone/prednisone for 10 months and Lupron for 12 months and recently has had an increase in his bilirubin 2.5. His MO has stopped the abiraterone temporarily and has ordered a sonogram of his liver/gallbladder and weekly monitoring of bloodwork. He is also slightly anemic. Has anyone else experienced this and is it common? Thank you.

[JohnInTheMiddle]

Hi Average Gilbert! I think this is your first post? Welcome! (Sort of ...😃).

May I ask if the reference to dementia on your profile is related to another relative possibly? I also note the young age of your husband at diagnosis. And he is on modern doublet therapy - but no chemo (usually Docetaxel)? (Which if added would make it triplet therapy ... )

Another question: does your husband have a medical oncologist or is he being treated by a urologist or radiologist etc?

Your bilirubin measurement, please, is in mg/dL? In many locations it's in umol/L. Handy to just know the original units. I myself am on Abiraterone and being slightly anemic is normalish and complicated.

As for high bilirubin someone else may have some insights. Just from my lay-person's perspective, and probably echoing your own thoughts, it would seem that you would want to have this clarified as soon as possible.

Strength and success for your husband and you figuring all this out, and the very best of results from therapy!

John

[Averagegilbert in reply to JohnInTheMiddle]

Hi, thank you for the reply. The units for the bilirubin are mg/dL. Sorry for the error. It seems to be dropping as today it was down to 1.5 mg/dL after being off of the Abiraterone for just one week. From what I have read, when it gets down to normal range the dr will start him again at a lower dose. We will see MO in 3 weeks.

He does have a team of doctors…urologist, radiation oncologist, and medical oncologist. Yes, he is young for PC. He has been healthy all his life and this came out of nowhere. We see genetic counselor next week. God has been so faithful to go before us and lead us to a great team of providers.

As for the Alzheimer’s interest…you are correct, his brother age 58 has sadly just been diagnosed with early onset Alzheimers. I have found this community to be extremely helpful to us for PC so I was hoping to find a similar experience to be able to support him and his wife.

Thank you for your encouragement!

[Mgtd in reply to Averagegilbert]

Just something to consider in regards bilirubin. I do not know if it applies to you. I have had an elevated bilirubin all my life. Most of my doctors over the years have related that increase to genetics.

[pakb in reply to Mgtd]

My husband as well- high bilirubin has been decided to be genetic. It has been high since prior to diagnosis.