I have met with CLL expert and heard that I am the first case he has ever known, of CLL forming brain lymphomas. My CLL, in every other respect is level, requiring no treatment, but only a 'Watch and Wait'.
Given these circumstances of no other pathologies,, I am told that my case is more than rare...almost unheard of.
The diagnosis has taken many months, and finally conclusive evidence that my brain lesions are indeed CLL has come as a consequence of brain biopsy,10 days ago.
The treatment will be Ibrutinib.
I realise that i can not expect there to be anyone in my condition reading this message. That said, as I approach the start of Ibrutinib, I would be very glad to have any information or advice that might be helpful.
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perfecteverytime
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I'm sorry I can't give any experiential advice on ibrutinib perfecteverytime but I do want to wish you well for it's use. The manifestations of CLL never cease to amaze me and whilst we all would like to be unique, this is an extreme way to do it! I can imagine it's been a scary experience and result for you.
Other ibrutinib'ers will be along soon to give advice on its use but here's to it dealing with these very unusual brain lesions.
The Imbruvica (ibrutinib) patient handbook can be found at the link below, I suggest you read it completely, and make a list of questions for your CLL specialist.
I had Imbruvica (ibrutinib) briefly and it is vital you know what to expect with regards to possible side effects, so you can advise your doctors promptly. Most side effects are minor and pass in time.
I'm curious how the diagnosis of brain lesions was done... was it by MRI or a biopsy? I have been through the possibility of central nervous system lymphoma... which was diagnosed by MRI...in my case spine was involved.
Hope you do well on Imbruvica (ibrutinib) most patients do fine.
Thank you so much. this is both immensely encouraging and most useful.
My diagnosis was made as a result of a brain biopsy. The operation to get a biopsy was ruled as too dangerous some time ago, but a neurosurgeon in Glasgow undertook the task.
Hi Perfecteverytime. I would be interested what your symptoms were, as I was diagnosed with CLL about 2 years ago but also suffer with excruciating head pains, I had a scan and was told I had an arachnoid cyst but this was not causing the pain. I saw a neurosurgeon and they said what I have is a "new daily persistent headache" of migrainous nature. I remain sceptical. Good luck with your treatment on Ibrutinib.
Good luck with this. Since Ibrutinib works so quickly to reduce your lymph nodes- (days!) I hope the lesions go away very quickly too. Remember to use the search tool on this site to search any side effects of ibrutinib that are talked about here. Most go away or are treatable. Just drink a lot of water to help flush out your kidneys and take it at night to prevent diarrhea. God bless you.
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