Ibrutinib Shown to Cross the Blood-Brain Barri... - CLL Support

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Ibrutinib Shown to Cross the Blood-Brain Barrier in CNS Lymphoma

Jm954 profile image
Jm954Administrator
5 Replies

CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary to get a good concentration in the CSF.

More information here: cancertherapyadvisor.com/ho...

Jackie

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Jm954
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AussieNeil profile image
AussieNeilPartnerAdministrator

Good to know that Ibrutinib can help should this occur. Getting drugs through the blood brain barrier is notoriously difficult.

Neil

Eagle5327 profile image
Eagle5327

I’m one of the rare ones. In 2017 my relapsing CLL spread to my CNS, causing blindness (from spread to my ocular nerves and retinas) and frequent seizures (from lesions on my brain lining). All was confirmed clinically through MRIs and lumbar punctures, etc.

Dr Bruce Cheson at Georgetown Lombardi Cancer Center treated me with high-dose ibrutinib and with two rounds of cytarabine administered intrathecally.

Worked like a charm. The seizures stopped after a month or so and after remedial retina surgery this year, I have most of my vision back.

I’m now in full remission, although I had to switch to acalabrutinib after a year due to adverse side effects from ibrutinib. I’m tolerating acala very well.

Very scary times. I hope no one else ever has to go through that.

Glad to see that possible treatments are now being examined for secondary CNS lymphoma. Thanks for sharing the link!

Geoff

noeagaman profile image
noeagaman in reply toEagle5327

Geoff,

That does sound scary and I'm so glad that they were able to get it under control for you. Here's to continued good health for you!

Chris

Smakwater profile image
Smakwater in reply toEagle5327

Good Going Eagle!

Smakwater profile image
Smakwater

Amazing! Hope the dynamic continues with these breakthrough discoveries.

We also need some advancement in the area of Richter's Transformation.

Imagine what that could mean for those patients with the high complexity of richter's diagnosis with CNS involvement. That would be huge game changer.

JM

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