r/cll

Hi people. I have plotted the trend for my WBC and Lymphocytes for last 3 years. My smear test mentions lymphocytosis. Does this indicate early CLL ? I have bad fatigue in the day time

https://preview.redd.it/7mt10epsjikh1.png?width=2512&format=png&auto=webp&s=302d09429cd7f216a68300c59dfc8038c4d67590

Hello,

My dad has CLL - he is 66, he was diagnosed at 63, and received treatment for a year, and is just having bloodwork every 3 months now.

His most recent bloodwork showed high TSH and low T4, meaning he is hypothyroid. But he doesn’t want to take medication for it and wants to treat it “naturally.”

Has anyone here dealt with hypothyroidism as well as CLL? What would be implications of him not treating his thyroid for months? Can it really be that bad? I don’t know how to convince him to just take the hormone replacement.

She was diagnosed when she had an elevated white blood cell count when she was getting blood work done. This was about 3 weeks ago. Out of 10 symptoms researched she has about 2 of them. She is 66 and otherwise in relatively good health. I’m just hoping my mom will be okay and still have a normal lifespan or relatively normal lifespan ahead of her and not progress into something worse. Any advice or thoughts is appreciated.

Hi everyone,

My dad (53) has Rai stage III CLL and has been on acalabrutinib 100 mg for ~1.5 months. His oncologist says his CLL response is good.

The main issue is a persistent, fairly intense headache that has been present almost daily since starting the medication. His oncologist knows about it and suggested a painkiller SOS.

One thing we noticed: he missed acalabrutinib for one day, and he says the headache wasn't there that day. It returned after restarting, although we're obviously not sure if that's connected.

His BP has generally been normal (around 120–130/80), sometimes lower than his usual, and he feels the headache may be worse when his BP is lower or when he has indigestion.

For anyone who has taken acalabrutinib:

• Did you have persistent headaches for the first 1–2 months?
• Did they eventually improve?
• Did yours seem related to taking the medication?

Not looking for a diagnosis—just trying to understand whether this kind of persistent headache is something others experienced. Thanks ❤️

Hi everyone. My sweet husband (44M) was just diagnosed with CLL out of nowhere. His allergist ran a few routine blood tests to check on his fish allergy and his white blood cells were very elevated at 30k. He was then referred to hematology where CLL was diagnosed. It completely blindsided both of us and we don’t even know where to go from here. His hematologist referred him to Dr. Brian Hill at the Cleveland Clinic, a CLL specialist who seems to be fantastic. He did the FISH and IGVH blood tests and unfortunately my husband’s case is unmutated and he has the 11q deletion. I have been going back and forth between crying and trying to read more about it on this Reddit and I’m just scared. From what the doctor said, this is treatable, but may require treatment sooner. Can anyone shed light on these blood test results and help provide any additional information? I have been told to avoid google because it is outdated. Any information is greatly appreciated!

These are horrible! I don't want to keep taking Tylenol and Ibuprofen. Thoughts?

My getting sick often and staying sick, us side-effects of meds and fatigue are making me dread going to work. I'm teying to find a fkexible work-from-home job, but even partial disability would help me establish myself in the job or even keep it part-time. Has anyone here with CLL applied for disability? Wondering what I would do, who all needs to be involved, etc. Doctor, obviously. Current boss?

Please check in if you feel comfortable sharing!

Also, if you have a cancer diagnosis, please feel free to join r/cancerpatients, which is for cancer patients only.

Hi everyone. I wanted to share my experience in case it can help anyone going through something similar.
In March 2026, I was diagnosed with Primary Mediastinal B-Cell Lymphoma (PMBCL), stage II, with a large mediastinal mass of around 13 cm.
I was treated with DA-R-EPOCH from the beginning, with 6 cycles planned in total.
Fortunately, I responded very well to treatment from the first cycles. My interim PET scan showed a significant reduction in both the size and metabolic activity of the mass. After cycle 4, my PET showed a complete metabolic response, Deauville 3.
Despite reaching complete metabolic remission after cycle 4, I continued with the full 6 cycles of DA-R-EPOCH to complete the planned treatment, without radiotherapy.
I know how many questions and fears come with a diagnosis like this: chemotherapy, hospital stays, side effects, PET scans, Deauville scores, residual masses, fear of relapse and what life is like after treatment.
I’m sharing my story because reading other people’s experiences helped me, and I’d like to do the same for someone else.
If you’ve recently been diagnosed with PMBCL, you’re receiving DA-R-EPOCH, or you simply want to talk to someone who has been through it, please feel free to message me.
I’m not a doctor and can only share my personal experience, but I’ll be happy to help however I can.

I went through the infustions for several months than a year on venetoclax. Blood levels have been good according to oncologist. Four months after finishing the venetoclax, started with diarhea so now have acute colitis. Around the same time, I got celulitis on my leg - treated with antibiotics. Then, about 8 months after finishing the treatment, I got strange burning pain in tailbone and stomach area, CT showed some inflammation. Finally about 10 months after treatment I got very nasty cough, upper respiratory and sinus infection or virus. I was given antibiotics and a steroid. It got better but has lasted over two months. Now I am using a steroid based sinus rinse and it seems to finally be helping. Oncologist said blood levels have been pretty normal. Anyway, its been scary. I never had so many things happen like this. I am afraid the treatment has damaged my immune system.

Hi everyone,

My dad (53) has Rai stage III CLL and started acalabrutinib 100 mg about a month ago.

His TLC before treatment was around 35.6, and his latest CBC shows:

TLC: 121.1

Absolute lymphocytes: 113.4

Hemoglobin: 10.9

Platelets: 162 (previously 111)

Absolute neutrophils: 6.54

He's otherwise doing okay. His earlier LDH was normal.

I know acalabrutinib can cause temporary lymphocytosis early in treatment, but seeing the TLC go from 35 → 121 has really scared me.

For anyone who's been through this: Did your lymphocyte count rise this dramatically during the first month of acalabrutinib? How did your doctor interpret it, and when did it start coming down?

Question. My family member who is quite advanced in age (90) and with other conditions (Parkinson’s and Rheumatoid Arthritis) just got diagnosed with CLL. Her PCP, rather then referring her to an oncologist is “taking charge” and is going to speak to the oncologist and then come up with a plan.
Being that her case is fairly complicated wouldn’t it make sense for her to see an oncologist directly? I understand that a PCP might need to be involved for coordinating things but it seems strange to me that she wouldn’t just be referred to an oncologist. I can’t even get skin cream without a referral to a dermatologist. Am I being paranoid? Her health care has always seemed sub par as it is.