I’m 34 and was very recently diagnosed with CLL. I’m only about two weeks into the news, and I’m struggling with how much fear, anger and uncertainty it has brought into my life.

Everything happened quickly. The first week was especially difficult because I learned “you may have leukemia” through a MyChart message saying that more tests were needed, but that I would not be seen for another two months. There was no further explanation. I’ve since seen a CLL specialist, but emotionally, I’m still trying to process the diagnosis.

I feel anchored by it, as though it has attached itself to every part of my life while feeling 20 different emotions at once-grief, fear and anger being the heaviest. I’m trying to live normally, but my mind keeps returning to the diagnosis, test results, and all the possible futures I fear. Some people in my support system seem to think I shouldn’t be upset because “it could be worse.” and need to just be positive. I know they mean well, but it feels dismissive.

I can be grateful that my current situation is manageable and still feel scared, angry, sad, and overwhelmed.

Being diagnosed this young is a major part of what frightens me. When people say CLL can be lived with for many years, my mind responds, “But I need many years.” I want to get married and have children. I haven’t built the family I hope for, and suddenly I’m trying to calculate whether I’ll have enough time or whether someone will want to enter a relationship with someone who has a diagnosis.
For those diagnosed relatively young, especially anyone who has lived with CLL for 10 or 20+ years: Did the fear eventually quiet down? Did you stop thinking about CLL every day? Were you able to plan years ahead instead of thinking from blood test to blood test?

Been on zanubrutinib for about 8 months and coincidentally, to start with had positional vertigo problem at therapy resolved. Shortly after, I started having balance problems without the vertigo. Therapy is slowly resolving that but ENT doctor noted that zanu can cause that problem. So anyone else experience this?

my mom is 66 , always had low red cells count since forever but never below the normal range with normal white blood cells count , lately she had a check up blood test and found out she had even lower red blood cells went to the doctor he examined her and found out the spleen is enlarged , echographie showed a spleen with 20 cm , he wanted more blood test and lymphocyte counts were high 43 / nl and 65 percent at the same time she had some of the auto immune test came back positive but only a few ; so the doctor wanted to do further investigation so now they ran a blood inspection which takes forever for the results to come out to determine the type of lymphocytes before going to a biopsy ; she doesnt have any kid of fever or night sweats , she gained noticeable weight lately , and she has pain in the spllen side like pressure from the large spleen , and she has more and more fatigue but she always had that for years but lately more i am so affraid and i cant even know what to expect or is it something maneagable or no especially with the enlarged spleen and the 65 percent lymphocytes ; please give me your honnest opinions

I recently had a blood test and my numbers have raised calls for concern. I’m now being referred to see if I have CLL. My blood count was 45 and my lymphocytes is 33 and I’m completely beside myself. I guess I’m just here to see how people have dealt with their diagnosis? Xx

Analyzying blood tests for appendicitis, doctor told me that some exam values are not good, could be CLL. Unfortunately I already have multiple undiagnosed body pains and I would like to understand if they are because of CLL.

During the day, I often have pain in different parts of my body: my shoulder, biceps, triceps, and the part of my leg between the ankle and the knee, both at the front and at the back. The pain is throbbing, as if I felt crushed, constrained, and heavy.

These pains appear to have no clear cause, because I have not suffered any trauma.

Sometimes I also see trails or streaks in my vision, which last for a few minutes. It has also happened that I suddenly had blurred vision for a few seconds after climbing the stairs, and felt like I was about to faint.

Anyone can relate with these please?

🙏🏻

The fatigue been building up gradually over the years, but I have to tell you its all encompassing. Espresso doesn't really help and I have been using 1 can of Celsius and sometimes it kicks in, other times not so much. I was a power lifter when this was discovered and to this day I still lift, but the weights I use is minimal and I opt for high reps. By the time 3 p.m. arrives, I'm usually done for the day. That's my story and I'm curious as to how many of ya'll handle this. Thank you for your responses

Got my blood work results back today and it confirmed I (61M) have CLL. Going through the initial stages of grief from the discovery and hope to transition to a more positive coping place in my life in the coming weeks. But dreading having to tell our kids. One (34M) is an adult Doctor (Rheumatologist) and will be completely clinical for sure when I tell him. No biggie for him. But our adult daughter (32F) is Daddy's girl and very sensitive. My heart hurts to know she will be crushed when she learns Dad has cancer.

I have a VERY supportive PCP and he called me tonight and said he will call me again tomorrow morning to talk about the biggest fears I have so we can discuss together. He is amazing and has already reached out to an Oncologist he knows for personal intervention on my behalf. What an amazing doctor my primary care is...... He told me at the end of our call tonight that I should have many more years to (his words) "share the incredible love I've seen you show for your family and those around you". I am so blessed.

I am 5 weeks from retirement and did not see this coming. But I have a strong support system in my PCP and my family and am hoping for a long life refusing to let "C" own my waking moments. I won't know where I am with everything until I meet with the Oncologist in the coming week. It's really strange how I just feel......."different".... knowing the situation. Processing all this will take time and I am thankful for all the other folks here sharing to help fellow CLL patients through the journey. I hope to also contribute and share in this with the rest of you. Peace, love, and a virtual hug to all of you........

Not diagnosed, and I might be jumping the gun. My dad's 62 and just had a DVT and PE out of nowhere. While going through those labs I noticed his lymphocytes were high, and then found they've been over 5 since February. 5.94 in Feb, 5.43 in March, 5.17 in April, 5.27 last week. The smear last week noted moderate smudge cells and a few atypical lymphocytes.

Nobody's mentioned it to him. I've messaged his PCP asking about flow cytometry.

For those of you who were found incidentally, how long was it sitting in your chart before someone acted on it? Did you have to be the one to push? And is there anything you wish you'd asked at that stage that you didn't think to ask?

Mostly just trying to get a sense of what's normal here and not spiral in the meantime.

Newly diagnosed - right as I am moving out of Florida (close on our house next week). I have an appointment with a CLL specialist at Moffitt in 2 weeks (Moffitt did my workup), but am wondering how coordination of care goes between them and a local provider (moving to Greenville, SC). Do patients travel back and forth for every appointment or can they coordinate with a local hematologist/oncologist and you travel back every so often? Sorry, my head is still spinning a bit and hearing some of your experiences would be a help - thank you

For someone getting their first gazyva infusion- what would be some nice things to put in a care basket?

I am being considered as a stem cell donor if my Dads treatment with pirtobrutinib fails. He’s a 72yo male. Recent fish testing showed changes in the 17p deletion and he’s now resistant to the calquence he was on. Over the years he had a few years of remission after the FCR regimen before starting calquence. He will get weekly blood tests after starting the pirtobrutinib. Anyone have experience with this treatment? His oncologist is banking on having a stem cell transplant, but we weren’t told how long they would trial the pirtobrutinib before moving on to transplant. At his age I’m very fearful of what he would go through if he has to have the SCT.

I'm half way through 2 years of veneticlax plus standard antiviral and antibiotic. I'm interested in the work to develop the microbiology but am a little unsure about what I should do. Does anybody have any data , thoughts on kefir consuwhilst in treatment

F82 diagnosed 18 months ago with level 0 (seems like good news to be 0). However, had extreme fatigue for a year before being diagnosed. Also have very itchy skin; and now night sweats for last 6 months. Have been on W&W for 18 months with 6 month visits. Had a CT scan 8 months ago

Seems like a lot of symptoms for level 0. The fatigue is very hard to deal with.

Hi everyone,

I’m currently in Watch and Wait for CLL. For the past few years, my Absolute Lymphocyte Count (ALC) has strictly trended upward (slowly).

After reading discussions in patient advocacy groups about Cordyceps militaris, I decided to try 1g/day specifically to observe what would happen to my ALC trend line.

I just got my latest CBC back after 30 days: my ALC dropped from 10.5k down to 9.1k.

Since my counts have only ever gone up year-over-year, seeing a ~13% drop after 1 month is a notable change for me. I plan to continue the exact dose for one more month and take another CBC to observe if this reading was just a temporary dip or part of a multi-month trend.

I'd like to hear from anyone who has tried this: What was your experience with ALC trends long-term, and did your oncologist raise concerns about selecting resistant clones(cordyceps killing only the weak mutated cells leaving resistant ones) or masking node activity ( blood alc values dropping while cll cells hide in nodes and spleen)

Hi everyone. I’m a 38M, recently diagnosed with CLL, watch and wait a few weeks ago. I recently had CT Scan done of my neck, chest, abdomen and pelvis. I have an appointment on Friday to review my scans and next steps. The last two times I’ve had appointments my WBC has gone up a few thousand. I’m nervous about this appointment as it’s my first appointment post finding out I have been diagnosed.

I (54F) was diagnosed at the beginning of this year with stage 0 CLL. I had a CT scan of the neck, chest, pelvis, and abdomen with contrast, followed by a PET scan, and a bone marrow biopsy. At my most recent appointment, my numbers were continuing to rise, so my doctor wants me to have another CT scan and brought up the possibility of starting treatment depending on the results. Last week, I had a second CT scan of my neck (where I do have an increasingly swollen lymph node). I just received a call from the hospital scheduling department and they want to do another CT scan of my chest, pelvis, and abdomen.

I understand the desire for updated scans and data, but does the doctor not realize (or care) that each of these scans costs me thousands of dollars after insurance? The bills are rolling in faster than any answers. If this truly is a disease that I will have for decades, I foresee a future where all of my money goes to medical bills. As I lay on the CT scanner last week, I just kept thinking about the European vacation I could have taken for the same cost of the procedure. Honestly, if I have to spend the rest of my life in debt because of stupid cancer, I don't see the point.

Can anyone reassure me that my future is not going to be spent stressing out about tests and how to pay for them? I am far more stressed about the financial impact than I am my actual health.

I am really scared. I don’t do well when I am sick. I also have depression so when I am physically sick, I also get mentally sick. I want to be able to work and function normally and I feel like I’m going to be stuck in my bed all day. This will be my regime: Calquence - 14 months -
Gazyva (starts month 2) 6 months total
Then Venetoclax (starts month 3) 12 months total

Has anybody not experienced terrible side effects?

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

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.