Hi, All -- I've written before, at first when I lost eyesight in May and again in June after seizures began, both of which stemmed from my relapsing CLL. It infiltrated my spinal fluid, brain lining, and eyes and caused extensive lesions. It's an extremely rare condition -- one specialist told me cases like mine are reported only once or twice per decade. Lucky me!
Thought I'd provide a progress report. I was treated with high-dose ibrutinib, which apparently is very good at traversing the blood-brain barrier. I was also treated with high-dose cytarabine, a more traditional chemo infused directly into the spinal fluid for direct delivery to the brain etc. My seizures are treated with Keppra, an anti-epiliptic drug. I will have the second and last infusion of high-dose cytarabine into my spinal column later today.
Progress has been slow but steady. I'm very optimistic. I can now see very well from one eye and the other eye has gone from complete blindness to about 50% vision. The seizures are totally under control although vertigo is still a problem. I still can't drive but I can walk unassisted and no longer fall over from loss of muscle control.
Everything is improving and it's huge progress overall. It'll take another month or two to get back to normal but every single specialist (and I have a lot of them now) is very encouraged and tells me not to worry. So I don't.
There are two takeaways from this harrowing experience, I think.
The first is that CLL is not at all a straightforward disease -- weird stuff can and does happen. They really mean it when CLL is described as "a very heterogenous disease." I don't think anyone should worry unduly but at the same time, don't be surprised if something weird happens.
The second is the supreme importance of knowing how and where to get to a CLL specialist if you need one. I would never in a million years have guessed that CLL could be the cause of my sudden blindness but my retina specialist and my CLL specialist ordered the right tests and figured it out fast. They got me the treatment I needed. Access to high-quality and knowledgeable care when you need it turns out to be super-important!
Thank you to all in this group that have sent me notes of encouragement and relevant technical materials and suggestions. Your support has meant the world.
Geoff
Washington, DC
CLL + Bladder cancer + prostate cancer 
