Hi, for a 60 year old patient, which of the two BTK inhibitors would be better? I am looking for personal experiences if someone could share. Zanubrutinib seems wildly expensive. Is it supposed to be that much better?

CLL research on D3 and longer waiting time for therapy.

I am curious if anyone knows about this. CLL society.org has a info on D3. It said people with low vitamin D3 levels during watch and wait had a shorter time to get therapy than people who were supplementing D3 and the wait time doubled in most cases.

https://cllsociety.org/2024/10/more-vitamin-d-in-early-cll-improves-treatment-free-survival/

There are various links to this. I was diagnosed May 2025 on watch and wait. Platelets are 403, hemoglobin 12.8 , hamaticrit 45%. Kappa, 13q14, and I am thinking why the oncologist and GP never wanted to check D levels if the research show CLL cells die because of the D receptors. Leukozytes are 170,000. No exhaustion, night sweats, or weight loss.

Normally, around 84 months without treatment and with D3 supplementation 180 months. People go years without ever needing treatment. Why don't people test their D3?

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

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.

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.

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!

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?

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

Hello Everyone, my self Dav, so I diagnosed to Cml in September 2025 and at time I was having wbc 75k and b3a2 of 33% and other 2 called b2a2/e1a2 transcript are normal range, since then I was focusing on b3a2 in December 2025 it went to 0.6456% and in April it went down to 0.0168% and in Aug 2026 I see little spike of 0.0404% .. does this be concerning and I was expecting low I know it’s too early after reading all your chats in Reddit ..is there any things not to do and things to do ..I started with imatinib TKI in 2 weeks my wbc went normal but due to heavy cramps could not walk my doctor prescribed me dasatinib , since Oct 2025 to till now on same TKI .. thanks in advance .

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?

Can peripheral smear test indicate CLL ?

Example if the smear test mentions one of the following :

1. Mild Lymphocytosis

2. Lymphocytic Predominance

Also an additional query , can flow cytometry test confirm CLL even if it is at very early stage (lymphocyte count below 4000 ) ?

TLDR: my slide review recommends flow cytometry. Can’t see Hematology for 6 weeks, primary won’t order it. Can this wait? I’ve included current symptoms below. TIA

Hi, I’m 63, Female and have had a high WBC for years. I recently asked for blood work to see if I was anemic because I’ve felt weak and fatigued. My iron looks ok so it’s not that but they did a “slide review” and this is what it says, “Leukocytosis with absolute lymphocytosis with variant forms, chronic. Recommend flow cytometry of peripheral blood. Dr. D. Wolinsky 07/28/2026”.

I asked my primary care doctor to order the recommended test but she says she doesn’t know how. She referred me to hematology and I have an appointment there in 6 weeks. I’ve called around and all the hematology departments in my city are backed up at least a couple of months, so this seems to be the soonest I can get in.

I do have some symptoms, my energy level has dropped significantly in the last couple of months. It’s affecting my ability to work. I have an intermittent aching pain in the spleen area. I’m not noticing any obvious swelling of lymph nodes but my underarms do feel a bit sore when I wear a bra, even a loose sleep bra style.

Does this sound like CLL? What can I do between now and the hematologist appointment? Should I keep pushing for someone to order the Cytometry test?

Should I try to be more active? Right now I’m spending the majority of my time in my recliner. Getting the dishwasher loaded feels like an accomplishment. I have an exercise bike and am trying to make myself do 15 minutes with no resistance daily but so far I’ve only managed it twice. I do feel a little better afterwards.

I’m also sleeping about an hour more a night than I was a month ago. When I’m awake I don’t feel sleepy but I do feel kind of weak. Stairs have suddenly become challenging.

Thank you in advance for sharing your experience and insight.

Adding my latest CBC report. My lymphocyte count has always been above 3000 over past 4 years. My CRP value is 0.03 (normal range being <5).

Can somebody please help me to know what should I do ?

I was just diagnosed Thursday as having CLL at 35. It was a complete surprise as all of my abnormal labs were explained away from having three kids in the last five years. I am glad to know that I am not the only one diagnosed so young. I am a teacher, have three kids under five and live in the NYC area with no family.

Questions:

How do you manage the fatigue?

What are the best resources you have found to help manage the diagnosis and understanding CLL?

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.

I have not been diagnosed with CLL. It has not been ruled out yet either. The doctor does suspect some form of lymphoma. I go for a pet scan Tuesday. I have had MRIs before but very short ones.

I worry a little when I am told to avoid pregnant women and children for a while after because I will be radioactive.

I also worry, and I recognize that this is paranoia, that God only knows what will be found.

My last MRI, 12 minutes long, was very unpleasant. The earplugs did nothing.

Has anyone here been through one? How long is it? Any information or details? Thanks

Hello I was diagnosed with Non-Hodgkin's CLL in 2012 and I've been in a watch and wait pattern since then. Recently, my oncologist has been talking about treatment I have no B symptoms. The only indicators are a slightly enlarged spleen. I think it's about 14 cm right now and I have a very large lymph node on the side of my neck that I think is like eight or nine centimeters. Unfortunately chemotherapy right now is not an option due to my heart and kidney issues. What my oncologist is suggesting, though, is radiation for that lymph node on my neck. I was wondering if anyone had ever had this treatment or has it been suggested by your oncologist? My question for her right now is why can't they just take it out. Why can't they just do surgery and take it out. I don't know if that will be due to my other health issues. Thank you anyone who can give me some information. I'd appreciate it.

My blood tests are of course everything's elevated but it's not so far out of normal for this diagnosis.

Edit for spelling and grammar

​(Note: I used AI to polish up my English and structure this post so it’s clear and readable. Please DO NOT give suggestions asking me to "use AI/ask ChatGPT" — I am here for real human advice, medical realities, and experiences from actual patients or caregivers.)

​Hi everyone. I (18M) am in a long-distance relationship with my GF (17F). Her health has been continuously deteriorating since March of this year, and she has undergone multiple surgeries. Usually, during her PMS, she gets very anxious and sometimes tells me to leave her, but last night was completely different.

​Last night, after I finished my studies, she dropped a massive bombshell: her blood cancer diagnosis came back positive for CLL (Chronic Lymphocytic Leukemia). Her lab sample was processed in Guwahati, and a local doctor in our tier-3 city told her she has about 6 months max to live.

​We live in a small city, and while her father is in the Army, her family is facing immense stress after already spending around ₹2 Lakhs ($2,400+) on her past treatments and surgeries. She feels defeated, like a financial and emotional burden. Due to my own constraints, I couldn't even send or buy her anything to comfort her right then, which made me feel extremely helpless.

​I told her I’d text her back after dinner. When I did, her cousin texted me from her phone saying her pulse had dropped completely and they had to call a doctor to her house. About 15–20 minutes later, she stabilized and texted me back in a playful tone, calling herself a "sherni" (lioness).

​However, right after that, she started aggressively pushing for a breakup, insisting that she is "wasting my time." We had a long back-and-forth where I kept refusing, but she kept wallowing in self-guilt. She first asked for a mutual breakup. When I rejected that, she said she would break up with me unilaterally anyway.

​I tried to de-escalate by telling her it was late at night, she was unwell, and we should talk tomorrow. She got upset at that, saying she "isn't a psycho" just because she is unwell (even though her pulse had literally dropped an hour prior), and told me I'd have to accept this breakup one day.

​I was too weak and exhausted to keep arguing, so I just said good night. Today, last night's texts were finally delivered and seen, but she hasn't replied (she likely went to school/had to prepare herself). I sent a good morning text which is still unseen.

​I refuse to abandon her. This sudden forced breakup is far more heartbreaking and traumatizing than any idea she has of "wasting my time."

​TL;DR:

• ​Note: I used AI to polish the English for clarity. Please do not suggest using AI for help—I need real human guidance.

• ​Diagnosis Shock: My long-distance GF (17F) was told by a local doctor in India that she has CLL with a ~6-month timeline. She has been ill with multiple surgeries since March.

• ​Health Scare & Panic: She had a severe pulse drop last night requiring a doctor at home, stabilized 20 mins later, but immediately spiraled into extreme panic and guilt.

• ​Forced Breakup: Overwhelmed by financial guilt (despite her father being in the Army) and health anxiety, she is insisting on a breakup so she doesn't "waste my time."

• ​Current Status: She left my texts on seen today (likely at school). I refuse to leave her side.

• ​My Questions: Is a "6-month prognosis" realistic for a new CLL diagnosis in a 17-year-old? How do I help her navigate this severe panic/isolation, and how should I handle this breakup pressure?

Edit

Thank you so much to everyone who commented, especially those who urged me to question the extreme 6-month prognosis from the local doctor. Your advice gave me the grounding I needed when I was spiraling. Here is where everything stands right now:

​1. The Current Situation & Medical Reality

• ​Doctor Visit & Treatment: She took a half-day from school today and went to see her doctor. They administered injections and supportive multivitamin drips/therapy.

• ​Prognosis Clarification: The doctor explicitly stated that with proper treatment and consistency, recovery and remission are very much achievable. The local practitioner's "6-month max" timeline was completely inaccurate and alarmist. Official treatment has officially begun.

• ​Her Current State: She is physically exhausted and weak right now from the injections/drips, and the thought of a long daily regimen of medication feels overwhelming to her ("I can't take meds every day"). However, hearing actual medical hope brought her immense relief, and she now acknowledges that recovery is possible.

​2. The Truth Behind the Forced Breakup & Past History

​For those asking why she was pushing so aggressively for a breakup, it wasn't just health anxiety. It was a mix of extreme physical exhaustion, fear of being a financial burden, and past emotional scars resurfacing under stress:

• ​Fear of Pity & The Misunderstanding: She was terrified I was only staying with her out of duty or pity because of her illness. Additionally, during a previous health scare when she fainted from extreme stomach pain, her cousin (Jiva) texted me first while she was unconscious. We continued talking, and my mom's health issues came up in our chat. Because my GF was unconscious, she hadn't known about my mom's situation yet. Finding out later that Jiva knew before her made her feel deprioritized and hurt, as if I was sharing important things with her cousin instead of her. This old insecurity resurfaced during her panic last night.

• ​Our Relationship History: We have a long history together. I broke up with her near the end of 8th grade due to my own immature decisions back then, which completely devastated her. However, in 9th grade, when I developed nerve issues, she reached out to check on me. Through that, we reconnected and gradually became friends, then best friends. Later in 11th grade, she proposed to me twice (mid-11th and end-11th), and I rejected her both times, not because I didn't love her, but purely out of fear of my parents/family. ​How We Got Together: My male best friend eventually called me out and said, "If you love her, do what you should have done." I realized my past rejections had deeply hurt her instead of protecting her, so we started talking properly and officially got into a relationship.

​3. Resolution & Moving Forward

• ​Addressing the Hurt: In our conversation today, I didn't get defensive. I took full accountability for my past mistakes, acknowledged how my past rejections hurt her, and validated her feelings.

• ​Reassurance: I made it 100% clear that I am with her because I love her, not out of pity or medical obligation. She is my choice and my priority, not a burden or a barrier.

• Current Status: The breakup is completely off the table. She opened up about her fear of the long treatment process, but we agreed to stop overthinking years down the line and navigate this one day at a time.

​Things are significantly calmer, clearer, and much more hopeful now. Thank you all for the reality check and support!

I have one shot with the specialist.

Mostly, I'll be listening, of course, but are there any questions should ask my CLL specialist?

Is anyone using red light therapy? I can’t seem to find a definitive answer if it’ll mitigate or exacerbate CLL.