After a false attempt at J Hopkins due to an inadvertently departing clinical team member, I was accepted for the same trial at MDAnderson. I think they may be transferring me back up to Hopkins on my request, since I live in NYC.
I have been on the trial for 18 days now. Side effects, as expected, have been sleepiness, an acne rash (not too attractive), and diarrhea. Caffeine, topical Clindamycin and Immodium have been my friends. I may have to start the oral antibiotic for the acne, as it probably won't let up as long as I'm on these meds.
Meanwhile, my blood work looks really good, including most liver enzymes (ALT, Alk Phos)(AST went up a bit), except platelets, which have surprisingly gone down to 68 (this is not quite expected). AND, CA19-9 has gone down to 83 from 109!! I'm not sure how that's possible in two weeks, so I'm not putting too much stock in its significance.
This seems to be a very promising regimen, according to results seen in the (small number) of cholangio patients treated.
If anyone wants to discuss, please contact me.