r/cll

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. 😔

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.

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.

Im a dad of three girls and this news of probable treatment has kind of shot me out of denial. Talk of treatment in the summer possibly. They talk good success rates but im still scared. I know it's stupid but does anyone else have this feeling of grossness with the cll. Like I feel like my blood is dirty, and I cant get it out of my head. Ive always looked after myself and like looking and dressing well, but I suddenly feel gross from the inside out. Maybe its just me, I wanted to check-in with the sub first on it. I also wanna know about side effects to m, did anyone take a break from work for a time at the start of treatment and if so how long?

Not much to say about it. Before dx I thought the ac needed servicing.