Clinical trial experience with Estybon at NIH

[Guest guest]

Hi, Just got back from NIH in Bethesda .My wife received FCR

for CLL 8 years ago. Relapsed and retreated FCR again 6

years later.. This time only 1-1/2 year remission. She also

was diagnosed with MDS last year (probably from the FCR). We

tried Azerra, but BM and CBC not improved.

Enrolled in clinical trial at NIH using Estybon 72 hour

infusions. This is a phase 1 study to determine dosage. They

raised the dosage given to previously treated patients this

time around. None of the other participants at the lower

dose had enough of a decrease of lymphocytes and increase in

neutrophils to be considered as having a good response from

the treatment. After 2 infusions her lymphocytes decreased

over 50% and her neutrophils are now in a normal range. We

returned home tonight after 3rd session. Because of her

positive response, she is eligible to return for 4 more

sessions. We are also hoping that this will also help her

MDS. They are using the same dosage in phase 3 trial to

treat MDS.

We were running out of options and are cautiously optimistic

that continuation of this treatment will help keep the CLL

under control. I tried to get her into a CAL 101 trial but

she wasn't admitted because of the MDS. Maybe, just maybe,

this drug will help both her CLL and MDS. Thought I'd report

our experience to the group.