Connect
CLL Treatment side effects
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
I neglected to mention a few additional side effects - lack of taste, no appetite weight loss.
go 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.
-
Like -
Helpful -
Hug
2 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.
-
Like -
Helpful -
Hug
1 ReactionDon't forget financial assistance section@minnesotajim
@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.
Did 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.
@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