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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sveta25 | @sveta25 | Jan 17 12:05pm

Thank you, my husband started Brukinza today.
Do you take anything else beside brukinza ?
TYIA

kestinso | @kestinso | Jan 18 6:14pm

In reply to @kobebeef2026 "Increase levels of Vitamin D & C, take collagen, also daily walks (try at least for..." + (show)

@kobebeef2026
Interesting we both came to similar conclusions. You’ve got to get the stress out of your life. If someone is causing me stress, I find a way to politely dismiss myself. If the same, individual continues to stress me out I’ll find a way out of their life. And that includes my family. Also the walks. My doctor said taking daily walks of at least 30 minutes a day, helps healing. He said he wished the rest of his patients would exercise more.
I was diagnosed with leukemia about four months ago and I’m 70 years old. This is the hardest thing I’ve ever done in my life.
Good luck with your treatments. I hope they work for you.😊

sveta25 | @sveta25 | Jan 19 10:53am

In reply to @califirniagal "I was told they don't do chemo for CLL anymore. My WBC was 241 when I..." + (show)

@califirniagal my husband started Brukinsa( his WBC was 231 at the hospital) 1 tablet twice a day and was also prescribed allopurinol once a day. CLL was in his brain also which is very, very rare according to oncologist.
What side effects do you have besides bruising?

CaliforniaGal | @califirniagal | Jan 19 5:57pm

In reply to @sveta25 "@califirniagal my husband started Brukinsa( his WBC was 231 at the hospital) 1 tablet twice a..." + (show)

@sveta25
Oh so sorry I have never heard of CLL on the brain, only blood & organs. The newer pills are only 2 per day rather than 4. I have to go to 1-1/2 pills now as the new ones are stronger. I have always taken them all at once.
I get bad bruises easily. I have no fatigue or any other issues except dry skin, nails & hair.

bochos | @bochos | Jan 20 9:05am

In reply to @sveta25 "@califirniagal my husband started Brukinsa( his WBC was 231 at the hospital) 1 tablet twice a..." + (show)

@sveta25 I’m 77 and was diagnosed with CLL 2/3/4? years ago. No symptoms and was in a wait and see period. Then a hemoglobin count of 6!. Two units of blood and four infusions of Ribitoux(sp?) followed up by monthly blood tests. 4/5 good blood tests so now blood tests every three months. I along with my doctor are happy. But my doctor says once one has CLL ONE WILL always have CLL. I’m kinda in remission but as my doctor says it can come back with a vengeance. I hope I don’t need further drugs or whatever but it is what it is and I will cross that bridge when needed. I really feel for your condition, my advice is to keep a positive attitude and deal with your CLL as best that you can.
Take Care
Butch Ukura

CaliforniaGal | @califirniagal | Jan 21 10:47am

You may want to check out The CLL Society online. They have tons of important & educational info on their website. You can also get into an online support group who has monthly calls. There are many pill options & chemo is not the normal thing for CLL anymore.

sveta25 | @sveta25 | Jan 23 10:34am

In reply to @califirniagal "@sveta25 Oh so sorry I have never heard of CLL on the brain, only blood &..." + (show)

@califirniagal I was wondering about sun exposure while taking Brukinsa. Nobody mentioned about restrictions but I’ve read about it on pharmacy pamphlet that came along with Brukinsa.
Were you told about this issue?

CaliforniaGal | @califirniagal | Jan 23 11:54am

In reply to @sveta25 "@califirniagal I was wondering about sun exposure while taking Brukinsa. Nobody mentioned about restrictions but I’ve..." + (show)

@sveta25 yes & I am an avid tennis player so I use lots of good sunscreen & cover up. I wear spf 50+ long sleeve tops & full leggings. The ones with built in skirts are cute. See your dermotoligist twice a year.

njhornung | @normahorn | Jan 25 8:27pm

Still time to place your bets before a repeat CDC test tomorrow. I had 2 yesterday with the first showing a normal for me WBC but lowered lymphocytes. The second had both within the "Normal range". I was informed today that severe pneumonia is the reason for my hospitalizion.

Did the lab foul up?
Sample get corrupted?
Spontaneous Remission over matter of hours?????????
Other?

Lori, Volunteer Mentor | @loribmt | Jan 26 1:33pm

In reply to @normahorn "Still time to place your bets before a repeat CDC test tomorrow. I had 2 yesterday..." + (show)

@normahorn Sorry to see that you’re in the hospital and darned glad to see you haven’t lost your sense of humor!
I’m going to toss a fiver in the hat and say the blood tests are accurate. The production rate of white blood cells is about 10 billion per day. And if you have an infection, such as pneumonia, they can dip initially but then the factory goes into overdrive, calling in the entire crew to ramp up production! If I’m wrong, you can keep the $5.00.

Wishing you a speedy recovery!! How’s the food there?

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