I'm a 73 y/o woman, diagnosed with CLL in December of 2023, without any symptoms and was told to W & W. In the summer of 2024, I experienced repeated episodes of ocular migraines (Of which I have had 2 in the past 5-10 years) without any headache; only visual impairment. A follow up with a neuro-ophthalmologist led to an MRI of the brain, which discovered an inflammation in the meninges in my brain. AT the same time, I developed meningitis type pain. (I had three bouts of Mollarets Meningitis over 20 years ago so was familiar with the symptoms) This led to a lumbar puncture where they found the cancer cells in my Central Nervous system. I am being seen by a neuro-ophthalmologist, neuro-oncologist, hematologist, oncologist and an Oncology/CLL specialist - none of whom have experience with this rare form of CLL in the Central Nervous system. I have been on ibrutinib for 8 weeks, with debilitating side effects. A recent redo of the brain scan shows inflammation in the brain is still there. Mollaret's Meningitis is a very rare form of that disease. CLL-CNS is a very rare form of this disease. The excellent team of doctors are all interested in my case, but none can offer me much of a prognosis. It feels kinda lonely!
CLL in the Central Nervous System: I'm a 73 y/o... - CLL Support
CLL in the Central Nervous System
Sorry to hear of this finding. It does seem astoundingly rare. Perhaps they will add a monoclonal to the ibrutinib, or change to another drug for less side effects.
I know we often desire a prognosis, but try to tell yourself if the doctor doesn't know they also may not know how well you may climb out of this mess.
Try to remember, we may not have our CLL in the same location but we care and are pulling for you. 🙂💐
Hello ncostno, Sorry to hear about your situation. The time of year seems to make these challenges even worse. It sounds like you have a great team on your side, which can make all the difference in the world. Hope you have friends or family who are supportive. 👍
The experimental BTK degrader NX-5948 has shown promising activity in CLL with CNS degraders. Talk with your doctors about a trial. I also know of responses with Rituximab.
Thank you, Doctor. In reading up on this, the trials have only been for patients who have already received prior treatment. I'm not sure I would be eligible for any trial as I do not have any of the markers / stage symptoms that would normally initiate treatment, other than the neurological incidents I had within in the first few months of another wise asymptomatic disease. I am told by the CLL specialist, that there simply is an inadequate CLL-CNS population to conduct any trials/studies.
Hello ncosto, I am so sorry and well understand why you feel lonely. It is difficult to come to terms with the condition without the added burden of feeling that no one else is in the same position. I do hope there is someone on this forum who has experienced similar and can reach out to you. All the best.
Hello ~ I'm also one of us with CNS infiltration. I think you can read my story in my bio if you're interested. My situation was a different manifestation, with CLL forming lesions in my spinal cord (2020).
I've been very successfully treated with Ibrutinib for the last 4+ years, but developed A-fib last Tuesday. Am taking Eliquis 5 mg twice a day and Cardizem ER 120 mg once a day. Will be seeing my CLL specialist in anticipation of switching to Zanubrutinib on Monday.
What's tricky about treating CNS infiltration is finding a medication that crosses the blood/brain barrier. My doc feels there's now enough evidence that Zanu does. Fingers crossed!
My best wishes to you!
Beth
Thanks, Beth. I'm curious (if you can share), why you have stayed on the ibrutinib for 4 years. Have they been able to measure the success with reduction of symptoms in the CNS? Have there been any other factors that have shown progression or regression of the CLL? My visual issues and meningitis pain both ceased prior to my starting treatment, so I'm concerned that I'm being medicated without a direct correlation between symptoms and progression of the CLL
Happy to share...I was monitored with MRIs every 3 months for about the first 3 years, as both my CLL doc and neuro-oncologist wanted to keep a close eye out for any recurrence, then graduating to every 6 months, and just recently to annually.
You'll recall that in 2020, only emergencies were able to be worked up due to paucity of COVID testing and treatments. It took months to complete mine because of this. By the time it was established that CLL was responsible for the lesions seen on imaging, I'd sustained quite a bit of nerve damage. Docs were afraid I was headed for paralysis.
I had a very robust response to Ibrutinib with nothing new or worrisome seen on imaging and achieving a normal ALC for the first time since diagnosis in 2017. Both specialists feel the benefits of continued treatment outweigh the risks.
Hi Beth - just checking in to see how you are doing on your treatment. I am on inbrutinib now for 10 weeks. Blood work has spiked (which I am told is normal for start of treatment) and repeat brain scans and lumbar punctures still show active infiltration of the cancer cells in my CNS and inflammation in my brain (which has effected my vision and hearing). I'm hoping that a few more months on the BTk will begin to bring the progression to a halt.
Hello & Happy Holidays!
Well, a lot's changed since our last messaging. Beginning 11/24, I've experienced several bouts of crushing/unbearable chest pain and atrial fibrillation. My liver enzymes and neutrophils, BUN, blood sugar, and LDH are elevated, but lymphs are normal. I've not had a heart attack. My CLL specialist changed me from Ibrutinib to Brukinsa, and several other meds have been added. I've had extensive testing of blood, cardiac status, imaging by CT and ulatrsound, culminating in a stress echo a few days ago. The first part of the echo was perfect, but went into afib during the treadmill portion with heartbeat reaching around 200 --> given both IV and oral cardizem until my heart slowed into the 90s & was discharged.
Next morning, had appointment with a fairy godfather cardio-oncologist who spent two hours with my husband and me. A few adjustments to meds followed. Upcoming is more bloodwork, additional testing (including CT angiography), and follow-ups with the various specialists...
I'm home and feeling much better and looking forward to some family members arriving to spend a very low-key Christmas.
You are in my prayers. As I recall, it took a few months for Ibrutinib to make an impact on my CNS lesions ~ keep the faith!
Best,
Beth
Oh Beth, how awful to have to go through all of that. I often stay awake at night, wondering if the side-effects of the drugs are more dangerous than the CLL itself. But with the rapid advancement of treatment options for our disease, we have to stay hopeful that we'll be on the right treatment plan in the future and be able to move upwards and onwards......... My third round of brain MRI's and 2nd lumbar puncture all indicate that the CLL cells are still there in my CNS and my brain with deterioration in the eyes and now an ear issue as well. But I am hoping that the ibrutinib will start to reduce this concentration of cancer cells and that I won't experience any a-fib from it. You enjoy your holiday, get better and move onward with good health in 2025
so sorry you are going through this…. I hope you find some answers and relief soon.
Will keep you in prayers….
hello ncosto,
I am also CLL/SLL with CNS. First symptom was partial vision loss in left eye. I saw an ophthalmologist who referred me to a neuro-ophthalmologist who ordered blood work and MRI of brain and orbits, but called that same day and sent me to the emergency room when the blood work came back. WBC's off the charts......in excess of 440,000 ....
Last spring, starting while I was still in the hospital, I had six IT (intrathecal) chemo treatments, some cytarabine, some methotrexate. I was also started on Zanubrutinib with the addition of Venetoclax later. (ramp up with IV fluids during first two weeks to prevent TLS (tumor lysis syndrome.)
Most recently I was hospitalized for about six days for one more IT chemo (cytarabine) and then IV methotrexate which penetrates the blood brain barrier followed by several days of so-called "rescue" or antidote treatment (?leucovorin?) to flush the methotrexate out of the rest of my body to avoid organ damage (kidneys a big concern.)
The Zanubrutinib and Venetoclax combination worked very well for my blood/spleen/lymphoma in the rest of my body, but the recent concern was that the vision loss seemed to be getting worse. MRI continued to show enhancement of the left optic nerve in the intracanalicular segment.
I have written several posts previously which may contain more detail about some of the previous treatments, side effect problems, etc.
I counsel patience and self-compassion. There is a lot to learn. It is admittedly a very small group of CNS involved patients. Wishing you all the best as you navigate these uncharted waters. You sound like you have assembled a very good team.
Thanks so much. I meet with my neuro-oncologist this week and the neuro-ophthalmologist later this month. I do fear declining vision in my right eye. We'll see what they say. Patience has never been one of my virtues.
re: patience....laughing....me neither....but I still recommend it....ah....
dealing with medical treatment has changed me a bit (not entirely).....
an anecdote: when confronted with a lab tech one very early morning at an outpatient lab appointment, who admitted (surprisingly enough) that he didn't know what he was doing and didn't want to "blow out" my vein or words to that effect and didn't know how to use a particular tube for blood.....(thank goodness he asked an older co-worker for advice on the tube).......I realized "we both need a win here".......
I took some deep breaths and calmed myself and he/I/we got through it....laughing....I wasn't sorry that I did not encounter him again.....but I hope he got the training he needed and is doing well....by the way, I did actually say out loud to him "we both need a win here" and I think it helped him....why this cracks me up is beyond me, but it does.....I guess b/c I am more prone to be judgmental and demanding.....and it surprises me that I was able to get in a different frame of mind on that occasion......and since....
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