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.
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!
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