r/cll

Hi all. Got the call on Friday that my husband (32M) was diagnosed with CLL (and maybe SLL?). We have an appointment with an oncologist who specializes in it this week, and I’m hoping that will bring some more clarity/a game plan. During that initial call we were told this mostly impacts older individuals, so that part has me freaked out because I want a long, happy life with my husband. Not really sure what I’m looking for by posting this…hope, I guess? Thanks ❤️

In the late summer of 2025 I was diagnosed with CLL, stage zero. Had a follow-up test in March, still stage 0 but increased levels of whatever it is that means you have CLL (sorry not up on the terms), so I have another test in June.

I haven’t told anyone yet — I’m 62, have three adult children and a partner. No longer have an office job but run a sole proprietor small business.

Should I tell anyone? I mean I know a lot depends on dynamics of relationships and I’m obviously not asking about that, but I mean a medical reason.

I think it’s not hereditary (at least my hematologist said so), so there doesn’t need to be any testing of my children.

I’ve been told while at stage 0, you just lead a normal life although it’s a good idea to get a bit healthier (made some changes in that regard already). So does my partner “need” to know?

I was diagnosed in early 2023 at age 31 and have fortunately been wait and watch with no symptoms and steady numbers since then. My wife and I are expecting our first child in days or weeks, and on my baby to-do list is getting a life insurance policy. Its sounding however like that can be a nightmare when you have cancer, as you're often either getting rejected, or have to settle for guaranteed term insurance where you pay a fortune for pathetic coverage. A few websites have mentioned finding a high risk insurance specialist, but I don't really know where to start. Wondering if anyone here might have any advice or recommendations?

Some context:

I'm 35 and have had some recent visits with my primary care doctor and noticed an enlarged spleen and lymph nodes after a CT scan (For something entirely unrelated) blood work came back a little off so next thing I know I'm referred to an Oncologist. He does a blood smear and performs a bone marrow biopsy two days later along with CT scans specifically for my lymph nodes and spleen. He says he believes it could be CLL but I won't know for two weeks until the biopsy comes back.

Are there any younger people out there with CLL? I've never been seriously sick in my life and now this. Safe to say I'm freaking out a little bit. What can I expect if I do have it at 35 years old?

Hello 👋 My dad was diagnosed with CLL 2 years ago. He’s been symptom free, full of energy. In the last 3 weeks, he’s gained 20 pounds. He’s lethargic, no appetite, swelling throughout his body. I’m very worried. He can’t get into see his oncologist for 4 more weeks and I want answers ASAP.

My husband has had CLL for 10 years. He’d been doing really well managing it with general rest, exercise, lack of stress, etc, and his numbers were floating around 5-7k. He was put on Calquence in Dec 2024 - spleen had enlarged to 20cm. He had a rough time at first, but his body adapted and he’s been doing pretty well for the first 12-14 months. Lymphocytes exploded, then were down to 7k in march, then he picked up a cold or something (we both did, took a few weeks to feel better). Since then, he’s just been exhausted, run down, stomach issues, and very much not himself. Did bloodwork last week, lymphocytes up to 8.3k. Not a big jump, but I’m concerned about his overall health right now.

Does anyone have similar issues with Calquence? We thought we were in the home stretch and that he’d be able to stop taking it in the next 3-6 months.

Has anyone here experienced something similar with suspected Richter transformation? My father is 66 (almost 67) with known CLL, and this diagnostic nightmare has been going on since January 27th with still no final diagnosis or treatment started. There is strong suspicion of Richter transformation / aggressive lymphoma (possibly Hodgkin variant), but we are completely stuck. He has already had multiple unsuccessful biopsy attempts — one abdominal biopsy failed, another was non-diagnostic, and another planned biopsy could not be done. The only remaining option now seems to be a thoracic surgical biopsy to reach mediastinal lymph nodes. Meanwhile, he has recurrent fevers over 38°C, sometimes lasting for days, then disappearing briefly, only to return again, with very high CRP. He is now severely exhausted, mostly bedridden, visibly getting weaker, and doctors keep saying they need tissue before treatment, but everything keeps getting delayed, postponed, or redirected. We are approaching almost 6 months of this, and he still has no treatment while continuing to decline. Has anyone with Richter transformation (or Hodgkin variant transformation) experienced repeated failed biopsies and such a prolonged delay before diagnosis/treatment? Did anyone’s loved one become this weak before treatment and still improve once treatment finally started? Right now it feels like we are stuck in a nightmare while time keeps passing. 😔

Got dx with CLL 6 months ago, ALC around 7-8k. For about 1 month now got a discomfort on the left side of the abdomen around/under left ribcage. Got an abdominal MRI done this week and spleen measures 120mm normal structure. Ultrasound measured it a bit lower last month 116mm and 109mm 6 months ago but I know ultrasound isn‘t as accurate as MRI. Thoughts? Does it create discomfort at this size?

I'm beginning month three of my Gazyva+Venetoclax treatment. I've been ramping up the dosage of venetoclax for the past month. This week is my first week of the full dose, 400mg daily. Up until this latest ramp up, I haven't had any adverse reactions to oral therapy at all. Today, on my third day in the full dose, I've had stomach pains followed by diarrhea, followed by a calm stomach for the past hour. I'm wondering if others have had the same kind of experience, that is, no adverse reaction until getting to the full dose. If so, did the stomach pains and diarrhea persist? Did your digestive system eventually acclimate to the full dose? And if so, how long did that take?

My CBC results in mid-March were whacko, so my primary care provider ordered a repeat. The late March results were similarly whacko, so she referred me to an oncologist. I'm completely asymptomatic 64yo female in good health.

Met the oncologist today. CBC in the office showed WBC counts continuing to rise. They're running all the blood test specified by NCCN guidelines plus I'm getting a CT scan (chest, abdomen, pelvis with contrast). I go back in three weeks to get the news. I'm hoping for CLL.

I know I'm preaching to the choir here, but DAMN. The wait for a diagnosis is hard.

I'd love to hear from others and their experiences.