CNS involvement with CLL

[jjaye]

I have been diagnosed with CNS involvement with CLL. This is a condition diagnosed in only 5% of patients with CLL.

Are there others reading this with this diagnosis? Would love to hear from you.

[AussieNeil Administrator]

Sorry to hear your news. This is the only related post that showed up after your post, but it has been noted in other posts that Ibrutinib can work, as the molecule is small enough to traverse the blood brain barrier:

healthunlocked.com/cllsuppo...

I hope you get some more replies, because this rare complication has been discussed previously.

Neil

[Jm954 Administrator]

Hi jjaye,

I see this is your first post so welcome to the group. We hope you'll find information, support and friendship here.

Regarding your CNS CLL Ibruitnib has good efficacy and we have had several members with this rare complication of CLL who have had excellent results. Eagle5327 is one of them and he may respond to your post.

I posted about it some time ago and here's the post with a reference to a case study

healthunlocked.com/cllsuppo...

Very best wishes

Jackie

[SofiaDeo]

Hello! Welcome to the group. I don't have CNS involvement, but I enjoy researching stuff. In addition to ibrutinib, venetoclax is being investigated for CLL patients with CNS involvement. IDK if you like reading stuff about CLL treatments to ask your doctor about, but here are some links:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

This one below isn't about CLL per se, but about how venetoclax crosses into the brain in AML:

tandfonline.com/doi/abs/10....

[DRM18]

Hi jjaye,

May I ask, what were the symptoms, and how was it diagnosed? (I'm being tested for it now due to persistent double vision.)

Edit: oh, & I’ve read that the current thinking is, CNS involvement may be as high as 20%—it’s just not always diagnosed ...

--Dave

[jjaye in reply to DRM18]

Dave , thanks for your response.

I was diagnosed with CLL in 2016 and was on w/w. In December of this year I began experiencing numbness on the left side of my face, down to my chin, my tongue was also numb. These symptoms landed me in the emergency room , which sent me home (thinking it was stroke related but was not).

After speaking with my PCP the next day and my Hemotologist ( was admitted to the hospital where I was immediately started treatment. High dose methotrexate . Rituxamate ( both intravenous). I had a cat scan pet scan. Bone marrow biopsy and numerous blood test, findings were that CNS was involved in CLL.

I remained in the hospital for 7-days. Side effects were minimal and I was released with the prescription ibrutnib which I take daily.

This is my third month of treatment and I am doin well, wanted to hear of others experiences as I wrestle to understand the effects of CNS going forward.

[DRM18 in reply to jjaye]

Hi jjaye,

No lumbar puncture?

Has the Ibrutinib helped with the numbness?

As mentioned elsewhere, definitely message Eagle5327 (linked in an earlier post). He too was on Ibrutinib for a while; now he’s on no CLL meds, I believe. He’s a very friendly and patient and encouraging messager, one who’s helped me quite a bit.

And do read those links I replied with earlier: Eagle’s story is one of them!

—Dave!

[jjaye in reply to DRM18]

yes, i did have a lumbar puncture, it revealed cll cells.

[DRM18 in reply to jjaye]

Hi jjaye,

Has the Ibrutinib helped? Numbness gone?

[jjaye in reply to DRM18]

ibrutnib helped, numbness continues in my feet/toes

[DRM18 in reply to jjaye]

Hi jjaye,

Did you get an intrathecal infusion of Cytarabine? Most case studies I’ve read of CLL in CNS involve 1-3 infusions, & apparently it’s massively helpful.

Something to look into, if your answer is no?

[lankisterguy Volunteer]

Hi Jjaye,

-

Here is a link to the 18 times that "CNS Nervous" was mentioned previously : healthunlocked.com/cllsuppo...

-

Unfortunately in the UK they use CNS for Clinical Nurse Specialist, so CNS appears more often when referring to that useage.

-

Len

[DRM18]

Hi again jjaye,

Attached are some articles, from medical journals, discussing treatment for CNS CLL; most are hopeful, some quite hopeful, which is why I’m posting them:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

onlinelibrary.wiley.com/doi...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...