I lurk on this site and gather information from time to time ... thought it was time to contribute!
I started Zanubrutinib/BGB3111 in Jul 2016. Good response with lymphocytes down from 103 to less than 4 after 13 months.
My primary CLL symptom prior to treatment with Zanubrutinib was low platelets. Platelets increased from teens to max at 178 after 2.5 years.
I stopped Zanubrutinb in March 2022 due to platelets less than 30 ... I no longer qualified for the trial under which my Zanubrutinb was supplied. CLL was measurable but very low at this time ... 0.4 % of lymphocytes with CLL.
Steroids and Mycophenolate ineffective at managing platelets. Platelets are now managed with Eltrombopag with a count in the 60's.
CLL is slowly returning. Lymphocytes now 11.
Current plan is to see how long Eltrombopag lasts and then look around for options ... not sure what?
I am hoping to qualify for Venetoclax once CLL becomes a problem.
I experienced no side effects from Zanubrutinib and would recommend.
I have maintained a relatively active life and manage the low platelets by going a little slower down hills on my mountain bike and keeping a bandage in my pocket !