CLL in the Central Nervous System: Any Experience with Cytarabine (Cytosar)?

[Eagle5327]

Here's a weird one: my CLL has found its way to my cerebospinal fluid. It appears to be associated with lesions observed in the brain lining and behind both my retinas. Confirmed by a spinal tap, eye biopsy, MRI, about 17 million examinations and tests, etc. I've got a world-class CLL expert, Dr Bruce Cheson, as well as outstanding ocular experts and others on the team.

Apparently this is an extremely rare presentation of CLL. There's no standard treatment protocol. Things are going to be a bit improvised.

The CLL in my central nervous system is causing some serious problems for me and definitely needs treatment. I start tomorrow with Imbruvica at 4 capsules/day. Apparently it's good at crossing the blood/brain barrier and should provide help where I need it. In three weeks, I'll have another spinal tap to measure what, if any response I'm getting from the Imbruvica to the CLL in my cerebrospinal fluid.

During the same spinal tap, I'll get an infusion of cytarabine directly into the spinal fluid. Then everyone will take stock and we'll take it from there.

My question: Does anyone have experience with cytarabine (trade name Cytosar)? It's used for a variety of lymphomas and leukemias in the lining of the brain. I have no idea what to expect from the drug and would love to hear about personal experiences.

On balance I feel extremely lucky to have quick access to amazingly high-quality cancer care and most of all, for an extremely caring and knowledgeable circle of supporters and friends like all of you. Thank you!

Geoff

[cllady01 Former Volunteer]

Geoff, i have no experience with any treatment so far, but in looking at your postings, I see you have been "through the mill" and even have a video of some of your experience.

I can only say, you are a trooper and that your healthcare team seems to be one we could all wish for in such circumstances.

I applaud you for posting your situation here where all can have the opportunity to wish you well and to gain from your experience.

Thank you for your strength and caring as you go, pioneering, into another phase of treatment. Hoping all goes well!

[Hidden]

Dear Geoff-

So sorry to hear your your situation. Sending best wishes for a speedy resolution. Happy to hear you are in good hands with your medical team.

be well-

bill

[Bubnojay]

Oh Geoff

I wish I had a magic wand to wave over folk like you in our community, I've not had anything like you are going through so not able to help with insights.

So grateful you have an excellent team to get you through this, I can however send best wishes, and hope you are soon over this hurdle.

Good luck

Bubnjay1

[Eagle5327]

Thanks, one and all! Good wishes are always welcome and greatly appreciated.

I'll mention that one person wrote to me off-line to suggest that I also post on the AML, CLL, and a couple of other HU boards because the drug I was asking about, cytarabine (Cytosar) is used for those diseases even though it almost never is for ours.

Great thinking -- CLL often affects us in odd ways. The answers to questions might not be found in HU boards for CLL but might be in boards for our sister leukemias and lymphomas.

Good health to all, and thanks again!

Geoff