My CLL relapsed last year in a very rare form: presentation in the central nervous system, brain lining, and eyes. Partial blindness and localized seizures were some of the problems. Since this presentation is so rare, there is no standard of care.
My CLL specialist teamed with other specialists to create a customized treatment regime -- cytarabine (a brain cancer chemo) infused into my spinal column plus good old fashioned ibrutinib. Ibrutinib penetrates the blood-brain barrier and works in the central nervous system as well as peripheral blood.
Nine months later, there is no observable active disease in my eyes. Spinal taps and MRIs are negative. My blood numbers are now completely normal. I'm tolerating ibrutinib easily.
Last week, my specialist, Dr Bruce Cheson, told me I'm now back in remission. I'll stay on ibrutinib for as long as it's effective. The docs will monitor my CLL through bloodwork and observation of my retinas.
I'm ecstatic. That was a very scary time. No one knew at first what the problem was nor what to do about it. Now I'm allowed to drive again, back at the gym, and feel great. Quality of life is excellent. Wahoo!
Many thanks to all of you on this list who supported me at the onset of my rare presentation, especially Chris of CLL Canada. You're all wonderful. Thank you for being there for me and for each other.
Geoff
Washington, DC
Now Hodgkin Lymphoma 
Ibrutinib = remission, you just need to be patient.
Ohio State
