CLL - rare brain complications

[basshy]

Hello. First post, my dad essentially showed up at my house on 10th July, super distressed as he said he couldnt focus and had a bad headache and was just really confused.

Fast forward, he’s had an abnormal white cell count in 2016 which would have shown he had CLL (if he’d gone to the doctors to find out).

We thought he was having a stroke but basically the doctors have decided that while it’s rare that he’s got a big disturbance in left hemisphere of brain and the cancer caused it.

It’s given him severe expressive and reflexive asphasia / dysphasia - which means he’s now essentially unable to really communicate at all.

The cancer diagnosis almost feels like an aside.

He had heart spasms in reaction to the lumbar chemo and got moved onto Ibrutinib. Which apparently he’s just going to carry on taking till it works or doesn’t .

Two months or so down the line - it just feels like it’s all getting worse because of the asphasia and it’s all a bit much. Be great to talk to anyone who’s gone through / is going through similar caring for someone.

How did you / do you cope?

[sllincolorado]

I’m commenting so this bounces to the top. I think 2 people have recently commented on brain/spinal cord involvement.

[cllady01 Former Volunteer]

I can feel your struggle and am so sorry this is happening to your father and your family.

There is little to say in the way of what you can do, except in working with the Drs. to understand if the radiotherapy mentioned in the link below is a possibility for your father.

Related situations have been reported here, but as you have learned these lesions are rare. The treatment in regard to the brain lesions has included radiotherapy.

The following post is where the radiotherapy is mentioned by 2 people.

healthunlocked.com/cllsuppo...

Please let us know how things are going. And in this process, it is important for you in your caring position and the family all be safe and to take care of yourselves. Getting your rest and any bit of recreation--walking to help with stress that has to be being experienced is important. I will be thinking of you as you navigate this difficult situation.

[basshy in reply to cllady01]

Thanks so much for your message and those links. The neurology team didn’t get too involved after the initial confirmation it wasn’t a stroke.

They said that the only thing that would give us more of an idea about what caused the legions was a brain biopsy - and he’s currently admitted under a Deprivation of Liberty Safeguard as he didn’t leave powers of attorney, and they didn’t want to do such an intrusive procedure.

Just in the emotional drama of it all I’ve done my best to make sure I’m asking the right information from the doctors etc but it’s been so hard to pin anyone down, especially with Covid.

Their meeting with Haematology, they ruled out all but the lumbar chemo as a pathway to getting him onto Ibrutinib as it permeates the brain and they thought it would help with the asphasia. He wasn’t eligible for Ibrutinib without failing a treatment. I can’t remember why radiotherapy wasn’t viable but I know thats not in their care plans.

It’s all overwhelming to be honest I really don’t feel “grownup” enough to know if anything I’m doing or asking is right tbh.

We had a Best interest meeting and the outcome was after all the teams reviewed his case that he’d go temporarily to a home. And he really wants to go to his home - but I could do the cancer care but this is something else.

[Jemorgen]

I know that with severe aphasia/dysphasia caused by stroke, speech-language therapy can help people regain fluency. I was also told recently by a Speech-Language Pathologist that reading aloud can help if no therapy is available.

Also, there are many ways to provide extra communication support using communication books with basic phrases that are used frequently, or themed communication books.

Hope this gives a bit of hope. Aphasia can feel devastating for everyone.

Heather 🇨🇦

[basshy in reply to Jemorgen]

That’s what they say, we’re still early days he was so intelligent / independent before this - it’s almost impossible to rationalise. Will definitely try reading to him.

[Jemorgen in reply to basshy]

Just to clarify. He is meant to do the reading aloud, not you reading to him. No doubt he’s very depressed and discouraged right now. He may not be willing to try but when he is ready it’s a good exercise to build fluency.

[basshy in reply to Jemorgen]

Ah. Sadly. We’re beyond that completely. He can’t read anymore, the affected side only has limited vision and that aside, literally can’t process the words

[Jemorgen in reply to basshy]

I’m so sorry to hear this. I hope you have access to Speech therapy but regardless, he may enjoy you reading to him aloud if he can process. Ask him. Music may be better. Sending positive thoughts.

Heather 🇨🇦

[basshy in reply to Jemorgen]

Seeing him again tomorrow so hopefully be able to ask about his other speech therapy then! Thanks for advice Heather

[Jm954 Administrator]

Ibrutinib is a good treatment for CLL with brain and CNS involvement but it needs to be given at 560mg to get a therapeutic dose across the blood/brain barrier and into the CSF.

My understanding, and I'm not a doctor, is that the aphasia can be reversed.

Very best wishes to you both

Jackie

[yazbe in reply to Jm954]

Jackie,

Would you be so kind as to provide a reference for the high-dose Ibrutinib vis-a-vis crossing blood/brain barrier? I am on the standard 420 mg dose since 7/23 and am having repeat MRIs on 9/15 to assess progress of my CNS involvement.

Since I live in the States, where health insurance companies are in charge of medical care, I suspect I need to fail the standard dose before insurance would pay for the higher dose

Many thanks ~ wishing you the best!

Beth

[AdrianUK in reply to yazbe]

I found a link to a simple explanation of the study cancertherapyadvisor.com/ho...

[yazbe in reply to AdrianUK]

Thank you, Adrian!

[Jm954 Administrator in reply to yazbe]

This is my previous post on the subject healthunlocked.com/cllsuppo...

I have since found others with the standard dose of 420mg

ashpublications.org/blood/a...

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

This report of Venetoclax also crossing the blood brain barrier might also be useful

Best wishes, Jackie

[yazbe in reply to Jm954]

Thanks so much!

[yazbe]

Hi I'm one of the people mentioned in the first comment above with CNS involvement. My lesions were identified by MRI and were found throughout my spinal canal, cord, brain stem, and margins of my cerebellum. However, my symptoms seem to have been driven by a lesion in the thoracic region of my cord.

I was started on Ibrutinib on 7/23 and will be having repeat MRIs on 9/15 to assess my progress. Hang in there! I wish your dad and you all the best! Please check out the posts from Eagle5327, another one of us with CNS involvement.

Beth

[basshy in reply to yazbe]

Hey Beth, everything crossed for your next MRI! I’ve been a bit of a chicken reading in too much detail, but I’ve missed asked doctors some key things it seems.

[Hoffy64]

Maybe see if CLLSociety.org lists anything like this on their site,

They have an ask the doctor section as well,

Mark