CLL---how does it behave?

Posted by annedallas @annedallas, 1 day ago

Seventy-eight year old female here. Diagnosed with bladder cancer in early 2025 and had my bladder removed that March. A CT scan during my workup revealed a hot spot in my right armpit; a biopsy revealed CLL. Very early stage. So far I've had two ivig infusions and lab work, nothing more. The lymph glands in my neck occasionally feel swollen, and I have sporadic pain in my right shoulder/back which I'm hoping is muscular or arthritis (I've seen my shoulder surgeon, and have been doing PT). I seem to still have my robust immune system.
How does CLL manifest, other than in blood counts? Are there predictable body changes or other forms of distress? How does one know when it's genuinely progressing? I can be a hypochondriac and have a fertile imagination. It would be nice to corral the pessimism!

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minnesotajim | @minnesotajim | 18 hours ago

It’s different for everyone. I’m 78 and was diagnosed with CLL 20 years ago. If you’re not seeing a CLL expert hematologist, find one (society.org has lots of information and lists of experts).

ksalvia | @ksalvia | 11 hours ago

AS minnesotajim says, it’s different for everyone. My 73 year old husband got diagnosed in March which called for immediate treatment (as immediate as the “system” would permit, anyway). He had no symptoms and it was routine bloodwork following a bout with pneumonia in July 2025 that revealed the red flags. Turned out the pneumonia itself (and subsequent illness) were symptoms. Definitely seek a hematologist. Agree cllsociety.org is a great resource.

Current symptoms: tires easily, weight loss, bronchitis that won’t go away.

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