CLL with CNS involvement

[MaggieMcL]

My partner was diagnosed with CLL 3 years ago as a fit and very active 61year old. Lymphocytes have always been low level (around 28) so was on watch and wait but now has infiltration into Central Nervous System which is extremely rare at his stage of disease. Challenge is to find a drug which will cross the blood brain barrier. Currently on Ibrutinib. We would love to hear from anyone with similar experience.

[Jm954 Administrator]

So sorry to hear you've got to deal with this rare complication. I've got no similar experience, just wanted to send best wishes for the future.

[MaggieMcL in reply to Jm954]

Thankyou jm - very grateful for support.

[Jm954 Administrator in reply to MaggieMcL]

I've not seen any information about Venetoclax in CNS CLL, most patients seem to be treated with intrathecal methotrexate and radiotherapy. Hopefully, you're at a specialist centre and they have some experience of this. Best wishes.

[intermark]

Even tough I was diagnosed with CLL going on 4 yrs and still am on W&W , I have read anything on it that comes across, keeping in mind that I am not trained in this very arcane science, I was recently asked to participate in the marketing and business development for Venetoclax in Mexico by ABBVIE and GENENTEC and I recall reading that this drug in fact works by crossing barriers, so I suggest you inquire from your health team, and certainly wish u good luck

[MaggieMcL in reply to intermark]

Many thanks Intermark - will certainly ask about it.

[Jilltap]

Like Jm, just wanted to wish you the best of luck in finding a good treatment. Healing hugs.

[ezabella]

Hi Maggie Mcl,

Sorry to hear about your partner's condition. My CLL caused infiltration into my liver, which is also a rare condition as I am on wait and watch as well, diagnosed a year ago. So far, no treatment, but I do worry all times because my Liver function test showing increase in some of the enzymes, and I get some pain around my liver several times a day.

I try to manage my condition by regularly exercise and walk, in addition to health balanced diet and herbal drinks - such as (dandelion tea, Greek mountain tea, organic green tea). I do what I can and trying not to worry about tomorrow, which is still not easy for me.

My best wishes.

[MaggieMcL in reply to ezabella]

Hi ezabella - I'm so sorry you are having to deal with the extra complication. Treat ments are improving all the time, so hopefully the right one will be waiting for you if you need it. Meanwhile I hope the sun is shining where you are today ☀️,

All positive thoughts and best wishes,

Maggie

[ezabella in reply to MaggieMcL]

Thank you Maggie.

I hope liver functions stay stable till there are new improved treatment. So far I still don't believe I got serious illness, even after having biopsy in my liver which revealed 3 lesions of large size caused by CLL.

I am scared and worried of what is gonna happen later on.

Ezabella

[MaggieMcL]

Gavin also has 3 lesions - but in brain and spine (never been seen before apparently!) He is being treated with Ibrutinib which only Kills the rogue cells by starving them of the protein they need, with very few side effects. We didn't know it was a possibility so that was good news, but success at crossing the blood brain barrier remains to be seen. Try not to let imagination spoil how you are feeling today. Things can turn out very differently! I wish you all the best - and I'm very positive for future treatments. 👍

[RK69]

Happened to me. I am on 560 mg of Imbruvica and have been under going spinal taps or lumbar punctures with cytarabine injections weekly, then bi weekly and now once monthly with only two more to go. The malignant cells in my CNS have all but disappeared and I'm doing well. I will be on Imbruvica for the rest of my life or until it doesn't work any more or something better comes along.