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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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I neglected to mention a few additional side effects - lack of taste, no appetite weight loss.
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2 Reactionsgo to the website https://bloodcancerunited.org/
went there go to section on CLL & download pamphlet on it, chock full of information. Also on website outline of treatment protocols.
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4 ReactionsChemo is rarely used anymore for CLL. Talk to your doctor about the side effects. Hard to know what to sauna the middle of your treatment cycles. You really should secure a second opinion from a CLL expert. Check out the list on the CLL Society website.
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3 ReactionsDon't forget financial assistance section, @minnesotajim
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1 Reaction@minnesotajim
I was diagnosed with CLL 2/3 years ago. I am pleased with my Doctor’s decisions which were: two units of blood and four infusions of ribatox (sp?). My body & CLLhave responded positively. So I went from monthly blood tests to every three month blood tests. My Doctor says I am doing extremely well, she also told me that CLL can come back in a not good way. That’s what I like about my Doctor: I want the unvarnished truth and she knows my wishes and complies. She has “good bedside manners” . So I just deal with my with my CLL with a POSITIVE ATTITUDE and hope for a longer life that SEEMS to be in the cards at this point in time. I also realize that I as everyone am terminal. So I just am waiting for symptoms or the next good blood test. That might sound like a downer but the truth in my life at this point in time.
I wishing everyone who has a blood condition a Merry Christmas and Happy New Year.
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3 ReactionsDid it get worse after treatments started? If it did, I would stop and seek a second opinion. Plus there's some Chinese herbs and certain foods you might try. Also is your blood really thick? Are you on blood thinners?
I am taking Brukinsa for my CLL It is 2 daily pills. I am basically able to live my normal life. Side effects include: dry mouth (which is solved by eating an orange or persimmon, which get my salivary glands stimulated), swollen legs at night, which are normal by morning, frequent urination at night, and easily obtained red blood spots on my arms. I'm glad it's winter and I can wear long sleeved shirts and long pants.
Are others on Brukinsa? What side effects are you experiencing? I have been taking it for one month, and wondering how long it is needed? I have a meeting with the Oncologist to review blood work in one month. I am praying that the medication is short term. I'd love to be in remission.
I'll take whatever time I have left and have work to do for the Lord. But, finishing the race brings each of us to our greater life in eternity.
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4 Reactions@bochos When did you start your treatment and why doctor suggested you start treatment.
My husband was diagnosed in 2023, since then his WBC now is 135, low platelets but doctor still is in watch and wait mode.
TYIA
I feel for you. Chemo is tough in general, and at your age, even harder. Your symptoms don't sound atypical for infusion chemotherapy. Having said that, and that the symptoms don't seem to let up, I strongly recommend speaking with your doctor or their medical staff about how to mitigate these issues. That's what these people are there for.
From what I have read (in prep for my treatment), chemotherapy for CLL is generally considered for a younger population because it is so physically hard on a person. I'm guessing there is an important reason for your hematologist's choice, so it's important to forge on until therapy is done with the least amount of suffering. Perhaps they can lengthen the time in between cycles to give you time to recuperate?
Anyway, I wish you well. And finally, a good resource I've found for questions like yours (besides your doctor and this site) is Health Unlocked, CLL Support.
FYI, I'm 73 and started on Zanubrutinib as a first-line treatment about 2 months ago after W&W for 3.5 years and am tolerating it well. While I don't have experience with chemotherapy for CLL, I have had that "wonderful" experience for a previous cancer. To mitigate some of the symptoms you talk about, I had to take premedication (antihistamines and steroids). I was also given a pill for nausea.
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2 Reactions@pammyd please tell me what prompted you to start therapy.
My husband is still on W&W after he was diagnosed in 2023. He lost lots of weight in the last 6 months, his WBC is 137, platelets 85. And now he was diagnosed with limbic Encephalitis and is going through tests to find out if CLL caused it.
TYIA