Here's a weird one: my CLL has found its way to my cerebospinal fluid. It appears to be associated with lesions observed in the brain lining and behind both my retinas. Confirmed by a spinal tap, eye biopsy, MRI, about 17 million examinations and tests, etc. I've got a world-class CLL expert, Dr Bruce Cheson, as well as outstanding ocular experts and others on the team.
Apparently this is an extremely rare presentation of CLL. There's no standard treatment protocol. Things are going to be a bit improvised.
The CLL in my central nervous system is causing some serious problems for me and definitely needs treatment. I start tomorrow with Imbruvica at 4 capsules/day. Apparently it's good at crossing the blood/brain barrier and should provide help where I need it. In three weeks, I'll have another spinal tap to measure what, if any response I'm getting from the Imbruvica to the CLL in my cerebrospinal fluid.
During the same spinal tap, I'll get an infusion of cytarabine directly into the spinal fluid. Then everyone will take stock and we'll take it from there.
My question: Does anyone have experience with cytarabine (trade name Cytosar)? It's used for a variety of lymphomas and leukemias in the lining of the brain. I have no idea what to expect from the drug and would love to hear about personal experiences.
On balance I feel extremely lucky to have quick access to amazingly high-quality cancer care and most of all, for an extremely caring and knowledgeable circle of supporters and friends like all of you. Thank you!