CLL Support Association

I am new here but have been reading

I have been diagnosed with CLL a extremly rare form I have been told. Nobody to compare to. It s been about 3 years and I have looked ansd read and continue to find nothing. I am a patient at Hackensack Univ hosp in NJ Dr Andre Goy and Dr Samuel Singer in charge of my case. I had brain surgery in July 2016 to install a Omyaa resiviour for treatment and testing. I have CLL in my spinal fluid which causes inflamation in my ventricles of the brain and made me extremly sick....cognegitive dysfunction, shuffling while walng and later falling. affected thinking. and then loss of concousness I basicly disappeared. . I had a out 3 episodes and was brought back to almost functioning in hospital and rehab care untill finally a shunt was decided. I get a treatment every few weeks into the shunt Rutxinab and ibrutinub every morning by mouth 4 pills 140mg each . Things are kept at bay and my brain is doing well, thinking clear and driving my car seeing friends and enjoying my grandchildren. (I am 69) Problem is terrible muscle aches constant. and sinus trouble with cough. sinus scan and nasal scope showed no infection. pain is mostly upper arms also to touch. I have started gentle excersize at gym with no difference amd pool for mild excersize. My drs have told me theres no one with my condition when I ask for some data. I am hoping to read from someone here either experienced my situation or knows anything to help me understand. I get lost in the scientific terms...BTW my diag reads CLL HCC Primary Leptomeningitis... Leptomeningeal disease. I have had everthing scanned including my eyes to be sure stray cells are not hiding. Thank you

4 Replies

Hi Tigergal, I don't have any information for you but since you haven't gotten a reply yet, I just wanted you to know that I read your story and will pray for you.


Well tiger gal that does sound rare, poor you! Sounds like you are in good hands, keep strong.



I have a friend in Canada, called Darch... who has CLL and central nervous system lymphoma, CNS, you can read her story at the following link...

You will need to join CLL Forum... it is free


Hi Tigergal, it must be so isolating for you having such an incredibly rare form of CLL and I feel for you with this. I'm so sorry I can't offer any useful information on this particular manifestation of CLL but I wanted to wish you well and say you can still rely on the support of this site. I just think it will be difficult to find fellow CLL'ers who are similarity affected. Do your medical team know of any others?

We learn every day and I never cease to be amazed at how this can manifest itself. I'm only sorry that you've been affected in this way and I'm glad you have excellent medical support and wish you well for treatment options.

Best wishes,



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