Btk inhibitor PCI 32765

[Guest guest]

My husband, Tom, has been on the Phased I/II trial of Btk

for relapsed patients with CLL for 6 months. The lymph

nodes absolutely decreased in size during the first month.

CT Scans show decreasing nodes--not too many problems with

this oral treatment so far, but as time goes on I wonder how

cumulative it is.

Out of the blue, he awakes this past Friday with super

fatigue--the knock down kind --since starting Btk, his red

blood counts have trended downwards with the last one-(3

weeks ago)--showing all reds outside of range on the low

side. Platelets continue to trend downward from 130 to now

90. While everything still looks " good " on the counts, the

trend is obviously continuing downward. His IgG is now the

lowest it has been at 320 and his IgM and IgA are also

outside the normal on the very low side. After projectile

vomiting on Friday, he started a temp of 99.9 on Saturday

and by Sunday he was in the ER and his temp went from 100 to

101.8 during the 3 hour stay. Every bacterial test was run

and showed nothing.

Blood cultures during his fever spike showed nothing. A

viral infection was the decision. He was taken off Btk on

Saturday morning with a stand by notice from his Dr. to see

if he was well enough to restart on this past Friday. By

Wednesday, after only 5 days off Btk, he visually noticed

ALL his lymph glands enlarging at a rapid pace. He called

his Dr. and restarted Btk that day and the enlarging has

stopped.

I noticed that some patient's are seeing the same reaction

when stopping CAL 101. Can a patient stay on Btk for an

indefinite time even when the red blood counts are falling?

Lou