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Anyone else diagnosed with 'aCLL' - rare variation?
I was diagnosed with CLL in 2021 and put on 'watch and wait'. A swollen lymph node biopsy this year led to a finding of 'aCLL' which was described by my hematologist as being an accelerated or aggressive form of CLL. (Not the Richter Transformation, TG.) Because it is a relatively newly discovered subset of the disease, little is known about it, and I wonder if anyone else has had this diagnosis and if so how your doctor wants to manage it? Mine put me on a BTK inhibitor which I was unable to tolerate and we're currently in a holding pattern. Thanks and best wishes to us all.
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Hello - my husband was diagnosed with aCLL in September 2025 too. He has been on Brukinsa but for last couple months doctor is fiddling with dosage. There is another targeted drug that starts with a C they might try. Right now he’s off everything because WBC, platelets and neutrophils were all going down. Off the Brukinsa, levels started going back up indicating he either needs a lower dose, another drug, or a new bone marrow biopsy. I hope your situation is improving. We seem to be the only aCLL people here!
@ksalvia BTK inhibitors work by binding to the BTK protein on the CLL cell surface which drives cell division or disease proliferation. When this happens the B Cell receptor pathway is inhibited and all the CLL cells in the lymph nodes (where they primarily multiply) lose their ability to stay in the lymph nodes and they then spill into the blood often causing the Absolute Lymphocyte Count (ALC) to initially rise. This is called Lymphocytosis and is quite common and predictable when starting a BTK inhibitor like Brukinsa or Calquence. After about 2-3 months the ALC will drop and continue falling as the CLL cells (now unable to multiple) die their natural death (called apoptosis). BTK inhibition is one of the most effective ways to control the disease. aCLL or aggressive CLL is simply a much more active and proliferating form of the disease. In the lymph nodes of aCLL patients they often find multiple pale white areas which serve as disease proliferation centers (CLL factories) that cause higher level of disease growth than most CLL cases. They don't know why this happens in some patients, but the treatment and efficacy of the drugs is often the same. When a person stops a BTK inhibitor after being on it for a while there is often a rebound flare of the disease (rapid growth) that can alarm non-CLL specialist Hematologists who don't routinely treat CLL. It's a well documented phenomenon. I'd recommend a consult with a CLL expert at Mayo or one of the other large academic centers like MD Anderson or Dana Farber, etc.
Thanks. Hematologist/oncologist description was similar to yours, though maybe his was a little simplified, so we appreciate the detail. We are confident with our specialist and we have UCSF for backup if necessary. It’s figuring out the dosage that is the current challenge. The process has involved going on and off at various dosages for one month periods and analyzing effect on the labs in order to identify a pattern. He may have to switch to Calquence (thanks for giving me the name!) but may be precluded from that due to its known side effects on the heart. Remaining vigilant and patient pending pharmacologist and hematologist/oncologist meeting. And more labs of course!