I have great news. Beginning of July I had a Bone Marrow Biopsy and it came
back with NO CLL/SLL
I had failed FCR and went on to Venetoclax & Obinutuzumab. Obinutuzumab
finished in Feb 2018. I got Dermatomyositis (skin & Muscle) autoimmune
disorder shortly after I started Ibrutinib and when it showed up I was
taken off. My skin issues did not heal until I started on IVIG. As I weaned
myself off the steroids my mouth started getting sores. My dermatologist
are blaming the Obinutuzumab. These mouth sores are from another autoimmune
disorder called Oral Lichen Planus. It is obvious due to the striations on
the inside of the cheeks. So my question is: have any of you had Oral
Lichen Planus? OR could the Oral Lichen Planus be due to the way out of
balance B cells which are almost non-existent. Of course I read that with
thrombocytopenia people can get mouth sores also and due to me still taking
Venetoclax I have thrombocytopenia which seem normal for Venetoclax. I look
forward to hearing from you
Eliot Finkelstein
Dx with CLL May 2013
Failed FCR 2016
Stopped Ibrutinib Dec 2016 till 2/28/17 due to:
Amyopatic Dermatomyositis started Jan 2017 dx Aug 2017
Venetoclax & Obinutuzumab -Started Aug 2017