I have been gone for a while but have tried to keep up.
I went to the Mayo Clinic and spent 4 days to check out my neurological issues with my feet,legs and hands that I discussed in my BIO. Ends up they did a spinal tap and found rare atypical lymphocytes consistent with CLL. They also said " Cerebrospinal ,fluid (cytospin): involved by malignant lymphoma." No clue what this means?
Well that was a shock to hear. I now have to see a Neuro oncologist after Christmas. On a positive note they have only found cells. No tumors in brain or on spinal cord.🙏
Anyone hear of this before?. I am anxious to talk to neuro oncologist to understand how the CLL appears to have crossed over to my central nervous system. thru the brain blood barrier. ???
Also what is the significance of the lymphoma finding?
Now have to figure out a treatment plan. Seeing my oncologist this Tuesday!
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Rico49
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Yes, presumably the "malignant lymphoma" is CLL. Rarely CLL can enter the CNS, but Ibrutinib can penetrate the blood brain barrier, so is a treatment option. Please keep us informed.
Is this being recommended by Mayo? I'm not across CNS treatments for CLL as it is so rare. That's why it's definitely worth getting a second opinion via the CLL Society's free Expert Access Program: cllsociety.org/?s=Expert+ac...
Thoaw two treatments that you mention are used in acute leukaemias and occasionally Diffuse Large B cell Lymphoma, not CLL. As Neil says Ibrutinib or another BTKi should be a good option and other patients in your situation have seen resolution of their symptoms. It's an oral treatment, no intrathecal injections needed,
Thank you for your input. I meet with my local oncologist tomorrow I am anxious to hear what they think at Florida Cancer specialists. I won't know what Mayo Clinic thinks till 12/27. I'm also waiting to hear what Moffitt says as they have a neuro oncology department also.Thanks 🙏
My initials are DRM so your post thru me at first.😁Moffitt stopped my calquence because my white went to 3600 in one month. My wbc was only 22000 to begin with. Consensus of my Dr in Naples and Moffitt was my treatment was probably started too early.
We haven't decided on a path forward yet. My spinal fluid finding just occurred. I think going back to watch and wait was in the cards till this finding in my spinal fluid. I'll find out soon.
Yes, I had that in 2020. It can cause meningo-encephalitis. I almost died. I was in the hospital for a month and 1 week. Symptoms of it are a headache, neck pain, and slight fever, around 100 or less. If you get these symptoms, go to the ER ASAP. Tell then you think you might be getting encephalitis and why. You want to get treatment right away. Treatment can consist of Rituxin, vincristen, IVIG infusions. They really didn't treat my encephalitis. They knew I had CLL in my spinal tap, but their focus was to treat my CLL to get my WBC down. It just happens, they gave me CVP-R chemo and eventually IVIG which helped immediately. They were afraid to give me IBRUTINIB because my WBC would go up before it goes down. Believe me, if you get these symptoms, you don't want any delay in treatment!
An abbreviation for a chemotherapy combination used to treat indolent (slow-growing) non-Hodgkin lymphoma. It includes the drugs rituximab, cyclophosphamide, vincristine sulfate, and prednisone.
Thanks for sharing. We may have caught mine early. Anxious to hear what Neuro oncologist at Mayo says on the 27th.Eagle 5327 sure gives one a sense of hope. Fortunately I haven't had seizures or vision issues.
My fiancé was diagnosed with CLL in February, but it didn't explain all his symptoms so they did a CT scan and found lymphoma in his brain. The brain biopsy showed that his lymphoma was not related to his CLL. He was diagnosed with non-hodgkins DLBCL Primary CNS Lymphoma. He completed 4 cycles of MATRIX and is currently in the hospital waiting to be discharged after an autologous stem cell transplant.
It's been a long and tough year, but he's made it through and has most of his function again. Still relearning how to walk but they've caught yours before any neurological issues, you won't have to worry about that.
Yes, he was diagnosed with two separate cancers. His lymphoma is not genetically related to his CLL. And we never knew about the CLL beforehand.
His lumbar puncture was clear though, while his subsequent MRI showed several lesions. So, not sure your diagnosis will be CNS lymphoma if there aren't any lesions?
Also, to note, his lymphoma did start shrinking while he was taking Venetoclax. They weren't sure whether Venetoclax would penetrate the blood brain barrier, but it did. But it was only effective for a months or so. He had an MRI after being on Venetoclax for about 6 weeks. Some of the original lesions had disappeared completely, but there were some new tiny ones. That's when they decided to biopsy the lesions and discovered that they weren't CLL. He then had to start MATRIX for the lymphoma.
So it's possible that Venetoclax will treat the cells in your brain if they are CLL and they may add another immunotherapy. He was given rituximab instead of obinituzumab for the lymphoma, as part of MATRIX.
He had 4 cycles of MATRIX, each cycles is 3 weeks long as an inpatient. They then went ahead with the auto transplant because his lymphoma is aggressive and so chance of relapse is high. The biggest thing to consider was our income, because MATRIX is given as an inpatient, at least in the UK.
There were a lot of scary words used and his neurological symptoms progressed to the point where he wasn't exactly conscious, continent or able to eat or breath properly. He responded to steroids and was talking again within days and has since regained all function. So his treatment was effective, even though it has been a long road.
He is going to need physio for the muscle weakness he acquired, but he was in complete remission after cycle 2 of MATRIX. He completed 4 infusions of obinituzumab and 4 months of Venetoclax prior to starting MATRIX. He will complete the remaining 2 cycles of obinituzumab and 8 months of Venetoclax after he is discharged from his transplant.
Oh my. What a journey. So glad it was with a good ending!I must now wait to see what four Drs decide. I was going to Moffitt Cancer Center for the CLL and Mayo Clinic for the Neuro issues. Mayo found the cells in the spinal fluid 10 days ago.
I had a lesion on my cervical spine in March but it has gone away? I have a history of radiation, 5fu and cisplatin that I received in 1996. Very possible this is related as cisplatin has been shown to cause dna damage as well as Nero toxicity and cancers 20-25 years later.
As the Dr at Mayo said." Very complicated" hope to get some direction in the next couple weeks.
So I'll wait and see. Your story helps one's hope. Thank you!
Hi, Rico49 ~ It's been a long time since I've posted, but I continue reading this forum daily. I had CLL infiltrate my spinal cord and brain stem in 2020. I've written about my experience previously, and I think you can see my older posts which detailed my symptoms, work-up, etc. if you'd like to.
I've been in successful treatment with Ibrutinib, 420 mg daily since it was confirmed that it was, indeed, CLL which was causing the lesions seen on imaging. Since then, I've been followed with quarterly MRIs and bloodwork, along with visits with my CLL specialist and neuro-oncologist (at my last visit in October, the neuro-oncologist moved me to every-6-months MRIs and visits with him, as my imaging has been "rock solid" since beginning treatment).
Based on my own experience, I, too encourage you to begin treatment as soon as you can--my symptoms moved very quickly once I began noticing them. I send you positive thoughts and wish the best for you. Feel free to message me if I can offer any insight or support!
Hi there, I have been diagnosed with CLL in Central Nervous and yes, it is rare. I began treatment in 2019 after a five-day hospital stay. I am taking Ibrutinib as it is able to penetrate the blood-brain barrier and has been effective for me. I also see a neurooncologist twice a year for MRI. My symptoms are different from yours, but I would be happy to talk with you offline. I live in Denver Colorado and am being seen at the Cancer Center at The University of Colorado Anschutz.
If you care to reach out, send me your email and we can connect.
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