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
Written by
Eagle5327
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What an amazing story and good advice. We never know how strong we are until put to the test. One thing CLL teaches us, take nothing for granted. May you continue to climb back to good health. Please know your story is an inspiration to the rest of us. Kind regards, Sally (USA)
Wow, Geoff, so sorry you have had such a rough go of it. That your particular disease has gone a rare route, makes the medical care you have gotten, soooo important. I am glad you are in a place that has the expertise in what appears to be several medical spheres.
May all continue to go well as your journey with this wacky blood cancer continues.
I always marvel at human resilience and the courage that some of us have under fire. May you continue to see constant improvement and hopefully a swift remission.
Hi I am from Aus and I wish you all the very best.It is like I have said all along. Take any 2 people with CLL and you will find a variety of symptoms even between 2 people. So take a cohort of people and there are so many variations of symptoms that are caused by CLL . So a good sepcialist has to tailor the treatment to every individual patient. So my conclusion is the CLL is a rather insidious condtion. Anyway hope you continue to get better. Cheers
Geoff, that was an amazing read and just shows how unpredictable CLL can be. So pleased you got great medical attention and it's helped to improve things for you. Hope you continue to take steps forward and it sounds like you're in great hands. Wishing you all the very best.
Great news and thanks for the update. It's also good to be reminded that CLL is definitely it the same for everyone. Wishing you continued recovery and good health in general.
So glad that you are doing better. Such a bizarre story. You are truly special in every way. Your attitude and optimism no doubt will help you through this as well as your committment to seeking the best specialists and being an educated consumer. Hugs to you
So sorry for all you have been through. Your resilience and optimism are inspirational. I live in Maryland and would very much like to know who your Cll specialist is. Thank you.
Thanks for the nice words and encouragement. It's been a very difficult ride, for sure. I could never navigate it without help from my CLL expert.
I see Dr Bruce Cheson at Lombardi Cancer Center located at Georgetown University Hospital in DC. He's one of the top dogs in the country for lymphoma, including CLL. Here's a sense of the man and his depth of knowledge:
Dr Cheson takes new patients and could well be worth the journey for you, depending on where in Maryland you live and what your needs are. John Byrd at OSU might be another option if you live in the far western part of Maryland.
Please feel free to contact me via private message if you'd like to dig a little deeper, inquire about possible places to stay or eat, etc etc.
Thank you so much for your reply and offer of continued support. I am in Howard County so not too far. You are a generous soul. I wish you continued progress and health.
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