My CLL spread to my central nervous system three years ago. It caused lesions behind my retinas and on my brain lining, which in turn caused blindness and seizures.
CLL was definitely the culprit, confirmed by MRIs and analysis of the cerebrospinal fluid.
This presentation is extremely rare for CLL, although it happens occasionally with other blood cancers. There is no standard of care for CLL since it's so very rare.
I was treated with two rounds of high-dose cytarabine infused into my cerebrospinal fluid via a spinal tap (sounds horrible but it was by far the easiest chemo I've ever had). The seizures soon stopped and my vision began to improve. I was also started on high-dose ibrutinib.
End of the story is a very happy one. My vision is now near normal and I'm in a stable remission. I feel great.
A medical journal article was published on my case recently. Its purpose is to help make oncologists and ophthalmologists aware that this presentation of CLL exists and to explain successful treatment.
If you ever hear of anyone with spread of their CLL to their central nervous system, eyes, or brain lining, please remember this article. Maybe it will help them.
Thanks for all you do to support each other!
Geoff, Washington DC
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Eagle5327
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I think someone posted recently about this very issue if I'm right? And the doctors pretty much seemd to have given up? I need to find the post or someone else help please?
I'm so happy to hear how much it has helped you! Fantastic news!!!! Very happy for you ❤
Yeah, I missed that post at the time but someone sent it to me. She had pretty much given up hope. I responded to her post belatedly and have received no reply. That's one reason I posted what I did. Maybe someone will help get it to her. There's always hope with this disease!
You are right! Thanks. We are all different and so are our circumstances...but it's lovely of you to share and care. Hope your remission is a very very very very long one 🙂
Eagle5327 's post indeed provides hope and I've included a reference to his post on the use of Ibrutinib to treat CNS infiltration by CLL in the detailed information on Ibrutinib post: healthunlocked.com/cllsuppo...
Very happy to hear of your positive results! I, too, am one of the outliers whose CLL infiltrated my central nervous system. If you're so inclined, you can have a look at my previous posts in this regard.
The areas of my CNS involvement and my presentation were different from yours--long story short, I underwent open spinal cord biopsy on 7/15 and began Ibrutinib 420 mg daily monotherapy on 7/23. From here on, it's a waiting game to see if my neuro symptoms will improve. In the meantime, forward ho!
Hi, Beth -- Thanks for getting in touch and pointing me to your recent posts! You've probably figured out that there are very few of us with CNS involvement of the underlying CLL. It gets pretty lonely sometimes, doesn't it?
Yep, yours sounds very similar to mine. Once the CLL gets into the cerebrospinal fluid it goes places you don't want it to and can muck up all kinds of things. Did you every have seizures? Those were the absolute worst for me, worse than being blind for several months.
Ibrutinib worked great for me -- I give it major credit for my recovery. At the time my oncologist was a nationally-known CLL expert (he has since retired). He told me that a large fraction of CLL patients with CNS involvement used to die but that BTK inhibitors, ibrutinib first among them, are a total game changer for this condition. It's great that there are now two of us that add to the list of successes!
I don't know whether you checked out the medical journal article I cited in my original post, but I suggest that you do. It was written about my case specifically in the hopes that more oncologists and other specialists would be aware of the extremely positive qualities of ibrutinib for this condition, and maybe save more lives. Fingers crossed for all!
Even though ibrutinib was working for me I had to stop after about a year due to moderate urinary bleeding and severe diarrhea. I switched to acalabrutinib which also worked well against my CLL but once again, after about a year I developed urinary bleeding again and had to stop.
Surprisingly, after eight months without treatment my CLL is remaining in remission and my retina scans every three months are showing no new CLL activity. Yay! Next up for me will probably be zanubrutinib, the third-generation BTK inhibitor now in clinical trials.
I'm so happy that your CNS spread was properly identified and you've got such an effective drug for it. It took nearly a year for all my neurological symptoms to go away but they all ultimately did -- may your recovery be equally complete but even faster!
Hope this finds you still doing well! And, yes, we CLL/CNS folks are a pretty exclusive club.
No, I never experienced seizures. My symptoms seem driven from lower in the CNS, mid-thoracic region (T5)--at least that's the lesion that was biopsied. My symptoms are actually worse since the biopsy, but I knew that was a risk going into it. Putting my trust in Ibrutinib and my CLL docs (I'm followed by both my specialist and his colleague, a neuro-oncologist). Took my first dose of Ibrutinib on 7/23, and so far no problems.
The hardest thing for me is the uncertainty of what may come, but, thankfully, my years of yoga and meditation help me stay mostly in the present moment. I've been cleared to begin aquatherapy in a couple more weeks and am really looking forward to getting in the water!
I'm enjoying our correspondence. Please stay in touch!
Thank you for sharing - I had a seizure at the end of May that led to all sorts of tests & drama - including a lumbar puncture - it was decided that the few CLL cells in the first sample were an adulteration from blood as the needle passed through the skin into the spinal fluid - I knew it was bad news if they found it there en masse - thank you for sharing I think ( as I’m been complaining all week at how shit my eyesight has been suddenly) I am set to have neurological tests at Walton Centre to hopefully finally get to the bottom of this little drama - although I have had a few.
Wishing you good health.
Ps - wasn’t the post from someone with an Irish connection @Gallowaysam???? Or something
Spinal taps are not fun but there are worse things in the world. Unfortunately that's how the spread of CLL to my cerebrospinal fluid was clinically confirmed, leading to all kinds of other not fun stuff, including chemo via yet another lumbar puncture.
So, glad yours was essentially negative but hope your search is successful for a treatable cause for your vision issues. Those are no fun either.
Not sure who @Gallowaysam might be or what post you're referring to -- not ringing a bell. Sorry.
Are you still doing well? I have it on my optic nerve. Had six IT chemo. Will now add Venetoclax to Zanubrutinib for concurrent use for one year, with goal of remission. Thanks.
Hi -- Very happy to report that I'm doing great and have had no recurrence of the optical and other CNS problems I had in 2017. I've relapsed a bunch of times since then and have always insisted on early treatment to pre-empt any possibility of recurrence. So you might think about that in the future. I did that by requesting treatment when my ALC was approaching the level it was at in 2017 when the CNS spread happened -- and so far, so good!
Which IT chemo did you have? I had only two rounds of IT cytarabine which definitely helped with the blindness and seizures. Took a couple of months but those problems finally cleared away. And since that time I've had both ven and zanu -- great drugs and both very effective for the CLL.
Sounds like you've got some excellent and knowledgeable care to get you as far along as you are and to be administering the kinds of treatment you've been getting!
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CLL with CNS involvement 
Helpful article for the cll 
CSR - CLL
Alterations of the immune system caused by CLL B‐cells 
