Has anyone had a brain MRI while on venetoclax... - CLL Support

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Has anyone had a brain MRI while on venetoclax or rituximib ?

Moggn profile image
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I began to relapse CLL early 2021, started treatment on venetoclax Aug 2021 and then 6 X monthly rituximib infusions.

In Mar 2022, a month after the last infusion ,( after a bit of nausea over the previous couple of months) I had BAD nausea in the night then two very brief faints/blackouts, then vomitting, so off again in the morning to get this checked out .

I have cardiologist (due to a "mild" heart attack and subsequent Afibs after FCR a few years ago), who thought it wasn't a heart related "faint' as i seemed to have just settled to the floor as distinct from a damaging "splat". He did tests and couldn't find any issue but was concerned to find an answer.

He called in a neurologist who ordered an MRI which showed 'nothing that would have caused it" BUT did show an "interesting feature, that I don't need to be concerned about". This was (from the report) a "subtle signal abnormality along area postrema". He repeated , that its unusual in older people, wouldn't have blacked me out, not to be concerned.

My haematologist called his contact about possibility of the brain thing or blackout being a side effect of ventoclax and was told he hadn't heard of anything like this.

So, undiagnosed and so with an untreatable problem, I was advised that, the road rules here are that, sorry, I mustn't drive for 6 months and I was discharged with an appointment for another MRI and review with neurologist in 3 months.

The followup MRI is all clear !! That is obviously a good thing and a great relief 'cos despite the "not to be concerned " from the neurologist earlier its really difficult not to get pretty stressed about abnormal features in ones brain ! He doesn't know why it happened so no real idea why its gone.

Googling was a bit alarming - problems in that "area postrema" are common in MS and ongoing Nausea illnesses and the language of neurology is more complex/difficult than of blood cancers.

My case apparently is/was like an inflammation in that area. He thought my theory that the inflammation might have been a response to one of my treatments was likely , and that triggered worse than usual nausea - but not caused the falling down !

I'm interested in whether anyone else has had a brain scan and seen anything like this . ?

PS Due to covid precautions we haven't been going anywhere much anyway , but wife is a fine and uncomplaining driver.

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Moggn
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JigFettler profile image
JigFettlerVolunteer

I had a brain MRI for new visual migraine after FCR in 2019.

iv contrast, 45 min rest, easy. Important to keep still though. No claustrophobia.

Driving... a pain. Its an insurance issue. Stick to the rules!

Good yr MRI was OK. Wonder if you had low blood pressure?

Jig

Moggn profile image
Moggn in reply to JigFettler

Thanks Jig.Yes, my BP is OK, I wore a monitor for a couple of days and did a lot of sit to stand checks.

And yes, I'm sticking to the rules. Altho there have been no more incidents, and the nausea is gone it seems a sensible rule to be pretty confident that it was a one-off.

I hope your migraine problem is gone or controlled.

best wishes L

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