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CLL Treatment side effects are wearing me down: Anything I can do?

Posted by fabianfriedman @fabianfriedman, Dec 21, 2025

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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CaliforniaGal | @califirniagal | Jan 8 2:42pm

I was told they don't do chemo for CLL anymore. My WBC was 241 when I started on Brukinsa Oct 24 & last check was 19. I only take 3 pills all at once in the morning. 4 pills caused too much brusing & easy bleeding so I only did that 3 months then reduced to 3.
Check out the CLL Society website.

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sveta25 | @sveta25 | Jan 9 10:54am
In reply to @kobebeef2026 "Just back from doctor, on October 28 my WBC WAS 53, TODAY IT WAS 17.1. Everything..." + (show)
Profile picture for kobebeef2026 @kobebeef2026

Just back from doctor, on October 28 my WBC WAS 53, TODAY IT WAS 17.1. Everything proceeding nicely.

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@kobebeef2026 what was your WBC before treatment?
My husband’s is 200:(

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kobebeef2026 | @kobebeef2026 | Jan 9 11:55am

in 2021 it was WBC 53, 2022 IN REMISSION. In 2025 it came back it was 25 WBC, STARTED BRUKINSA SHOT UP TO WBC 97.1 , AFTER YESTERDAY BLOOD TESTS 17.1

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fabianfriedman | @fabianfriedman | Jan 9 2:01pm
In reply to @colleenyoung "@fabianfriedman, may I ask what symptoms or changes led to treatment starting in October 2025? What..." + (show)
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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?

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@colleenyoung
I had a spike in side effects such as extreme night sweats, uncontrollable shivering and feeling cold. I am getting BR with Chemo every 3 weeks finished two cycles. Getting a chest and pelvic scan and labs in a week or so to determine if I start cycle 3. For now I have fatigue, lack of appetite, night sweats and just don't feel well.

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kobebeef2026 | @kobebeef2026 | Jan 9 3:04pm

Increase levels of Vitamin D & C, take collagen, also daily walks (try at least for a 1/2 mile), get morning sunshine daily. Erase ALL NEGATIVE PEOPLE FROM YOUR LIFE...THAT INCLUDES FAMILY MEMBERS.

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pammyd | @pammyd | Jan 11 10:45am
In reply to @fg050370 "@pammyd did the doctor mention to start an iron vitamin regiment? This might help with the..." + (show)
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@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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@fg050370 Appreciate the recommendations. No, my MD did not recommend iron supplementation or an omega-3 regimen, and I have not spoken with him about this.

I do know my platelet count is pretty low, which is a side effect of the Brukinsa, and omega-3 supplements can thin the blood, so I won't be taking that at the moment. My iron tests came back within normal ranges, so I don't need iron at the moment.

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fg050370 | @fg050370 | Jan 11 12:12pm

I don't think the omega 3 will thin the blood but add the necessary vitamins to the blood to help break down the the clots naturally. The thinners you are taking just thin the blood to move around the blood clots. I hope this was helpful. Good luck.

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sveta25 | @sveta25 | Jan 11 12:39pm
In reply to @pammyd "My blood counts, in particular the increase rate of my lymphocytes and declining RBC counts, indicated..." + (show)
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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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@pammyd What was your WBC number before you started treatment. My husband’s is 201 now and they just now decided on Brukinsa.

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pammyd | @pammyd | Jan 11 1:24pm

101 (now in the normal range after about a month and a half on Brukinsa). It wasn't the WBC alone that drove the treatment decision, but other counts and their rise time that indicated the need for treatment.

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