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CLL Treatment side effects are wearing me down: Anything I can do?
I am a 78 year old male living in Southern California. I was diagnosed with CLL in Jan 2022 and told to wait and watch. In October 2025 the waiting was over. I am being treated at Desert Hematology in Rancho Mirage with cycles of Chemo and Saline infusions. I completed Cycle 2 last week and the plan is to start Cycle 3 next week. My side effects are dizziness, brain fog, no energy, chills, night sweats and wheezing and coughing. Each day brings side effects and its starting to wear me down - I never feel good or like I can do anything? Sound familiar to anyone?
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@fabianfriedman, may I ask what symptoms or changes led to treatment starting in October 2025? What type of chemotherapy are you getting?
My blood counts, in particular the increase rate of my lymphocytes and declining RBC counts, indicated the need for treatment. My lymphocyte count was increasing rapidly vs. a slow incline. I also had what is called extranodal involvement; CLL cells were found in a bump on my gum (extranodal involvement is apparently not that uncommon). While the latter was not debilitating by any means, it pushed me in the treatment direction.
I get a lot of information and help from an online support group called Health Unlocked CLL Support, which referenced the International Workshop on Chronic Lymphocytic Leukemia as setting the standards for treatment that most organizations follow.
Here are their most recent guidelines.
Treatment should be initiated if any of the following criteria are met:
- Progressive bone marrow failure indicated by worsening anemia or thrombocytopenia.
- Massive or symptomatic lymphadenopathy or splenomegaly.
- Progressive lymphocytosis, specifically a rapid increase in lymphocyte count or a lymphocyte doubling time of less than 6 months. (This was my primary indicator; you need to look at the trend in this count, not just a single count in time.)
- Autoimmune complications like hemolytic anemia or immune thrombocytopenia that don't respond well to corticosteroids.
- Constitutional symptoms (B symptoms) such as unintentional weight loss, significant fatigue, unexplained fevers, or drenching night sweats.
- Symptomatic extranodal involvement causing functional impairment in organs.
I wish your husband and you success in navigating all this and appreciate you reaching out to ask your question.
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2 Reactions@pammyd did the doctor mention to start an iron vitamin regiment? This might help with the anemia also an omega 3 regiment. The omega 3/beetroot will help restore cell balance in your blood. He should be able to get you prescription grade vitamins. It can't hurt.
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1 ReactionDid anybody have BRUKINSA treatment for CLL and if yes are there any side affects and what are they?
I'm on BRUKINSA for 6 months so far, it super elevates at first but then starts tapering off. Only effects I have experienced so far are bruising , some pain in bones.@sveta25
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2 Reactions@sveta25 I’ve been on Brukinsa (ZANUBRUTINIB) for almost 9 years (Clinical Trial at Mayo). Minimal side effects. Mainly bruising easily. It’s a great drug!
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1 Reaction@minnesotajim Thank you, hope you are doing great.
@kobebeef2026 Thank you. What is the dosage and is CLL getting better?
Just back from doctor, on October 28 my WBC WAS 53, TODAY IT WAS 17.1. Everything proceeding nicely.
160 mg 2x daily total of 320mg daily, CLL is getting better but this is 2nd go round@sveta25