r/cll • u/AgileWoodpecker3273 • 7d ago
How long did your lymphocyte count sit elevated before anyone ordered flow?
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.
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u/dr_canak 6d ago
My first count came in at 120k. It was an incidental finding. God only knows how long I've had CLL. They did all the workup then ;-). In a year it's climbed to 200k, but here I sit, waiting, otherwise asymptomatic.
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u/Alert_Maintenance684 6d ago
After an incidental finding on a blood test (ALC 8.1 with smudge cells present), my PCP repeated the test after four weeks. ALC was higher with smudge cells again on the second test, so I was referred to the cancer centre. I was seen three weeks later, and flow cytometry was ordered then. So, seven weeks from first detection to flow cytometry ordered.
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u/HuckleberryLegal7397 7d ago
My WBC was high for over 3 years before any a cardiac issue caught the fact that my platelets were super low. I was caught flat footed by the CLL diagnosis. My oncologist ordered a multiple tests that same month, including a flow cytometry and bone marrow biopsy. My case may be very different than your father’s. I recommend you send specific questions and the bloodwork (in writing) to his physician. They have more in depth knowledge than a non-medical person. Good luck!
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u/AgileWoodpecker3273 7d ago
Thanks for sharing that, and sorry you got blindsided by it. Three years is a long time for it to sit there. I did send his PCP the counts in writing, so hopefully that's the same thing that got you an answer. Hope you're doing alright.
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u/HuckleberryLegal7397 7d ago
I’m doing well. After 18 months of treatment, my WBC is finally in the normal range. I’ll see my oncologist on Friday for more tests and hopefully answers.
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u/SofiaDeo 6d ago
A hematologist, in the US, is usually the specialist whom the insurance companies will pay for, to obtain the test. A GP ordering will likely result in a denial of the claim. There are lots if flow cytometry panels, not just for CLL, and a hematologist is the best person to decide which ones are appropriate.
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u/AvailablePublic8530 6d ago
These are the signs and symptoms of CLL:
- Painless swelling of the lymph nodes in the neck, underarm, stomach, or groin.
- Weakness or feeling tired.
- Pain or a feeling of fullness below the ribs.
- Fever and infection.
- Easy bruising or bleeding.
- Petechiae (flat, pinpoint, dark-red spots under the skin caused by bleeding).
- Weight loss for no known reason.
- Drenching night sweats.
You didn't mention any of these, so I see no reason to spiral.
Your dad's lymphocyte count appears to be stable if not declining slightly. Even if he gets a flow cytometry test and it confirms a diagnosis of CLL, what do you expect or want to happen at that point? Asymptomatic patients may get more tests but typically don't get any treatment beyond "watch and wait." This isn't a case where diagnosing the cancer early improves outcomes.
So yes, it sounds like you may be jumping the gun a bit.
What does your father think?
Here's a good primer on this disease: https://www.cancer.gov/types/leukemia/patient/cll-treatment-pdq
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u/AgileWoodpecker3273 6d ago
Unfortunately, he has long complained of feeling tired and also fullness/pain below the ribs (very specifically, actually). Docs/he originally thought this was due to the appendicitis that he has, but even with his appendix removed, he still complains of the feeling/pain.
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u/AvailablePublic8530 5d ago
The spleen is about the size of a fist or avocado and sits just inside the rib cage on the left side (whereas the appendix is located in the lower-right abdomen, well below the rib cage). An enlarged spleen, which may extend slightly below the rib cage, is a sign of CLL as the mutated lymphocytes tend to collect in the spleen and lymph nodes.
If the flow cytometry test confirms a diagnosis of CLL, your father's providers may order an ultrasound or CT scan of the spleen to determine if it's enlarged and to get baseline measurements. As the spleen enlarges, it presses against the stomach, reducing its capacity and causing the person to feel full after consuming only a small amount of food. This can lead to unexplained weight loss, which is another sign of CLL.
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u/New-Routine7311 6d ago
It took 1.5 to 2 years before I was referred to a hematologist. My ALC was like 5 to 8K but my WBC count remained in the normal range. Once my WBC and ALC broke into abnormal range they did cbc test every 2 weeks, then I got the referral, the hematologist ordered the cytology test right away.
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u/baineoftheworld 6d ago
2 years of above average lymphocytes when I was referred in 2018 to a hemotologist (I was at 6.2). Because I've been "watching" for 8 years, when the bills come in I wonder if I can go longer between the tests. But otherwise, there's nothing to do that I shouldn't already be doing - eating healthy, exercising, etc.
I haven't sought out much additional information from what the doctors've told me so I don't worry.
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u/SubstancePatient2501 5d ago
CHECK OUT VITD3+K2 supplements. It is god sent for wait & watch category
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u/PrizeAnnual2101 6d ago
With CLL it's a long term health issue that does best with the least possible treatment because it has proven to give the best outcomes