I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000.
I am so concerned I am developing CML. The Dr says we have to wait until we get more labs and the results of the flow cytometry on Monday.
Literature says it's very rare to have CLL and CML coexist.
I would appreciate any thoughts on this.
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ralphfelo
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Could you please provide more information, because literally, something doesn't add up. Assuming your WBC is fairly stable, I can't see how your absolute monocyte count can jump from 08 to 1,000 or by 125 times, when the percentage of your monocytes only has a threefold change, from 5 to 15%. For that to happen, it appears that your WBC must have skyrocketed for another reason.
Specifically, what were your WBC counts and percentage and absolute monocyte counts for your two blood tests. If you can add images of your results to your replies with any identifying information redacted, that would help me help you understand what's happening. As you have discovered, CML is rare when you already have CLL. Usually jumps in monocyte counts are of no consequence.
You might like to lock your post as described here, healthunlocked.com/cllsuppo... unless you'd like your experience searchable on the internet to help others with your quandary.
Hi AussieNeil thank you for your reply. I am attaching the results. It only lets me paste one image. Almost all went up but specially monocytes from. 08 to 1.08 absolute. and neutrophils. WBC count is about 6000. Neutrophils went up from 2.41 to 3.41. Lymphocytes same at 2.4. Total WBC from 4.77 to 6.97. RBC and platelets also went up. Thank you for looking and sharing your opinion
Relax! Your absolute monocyte count is barely out of the reference range! I've had higher absolute monocyte counts, particularly when I was having daily G-CSF shots. Absolute counts are what's important; percentages are very misleading when you have CLL.
You can edit your post to add an image and add further images in subsequent replies
Thank Neil. As always your replies are very helpful. We are all lucky at Health Unlocked to have you there.Tomorrow is Thanksgiving in the US so I will make a toast for you!
I think you might be thinking of CMML, not CML. In either case, from what I've read, odd cells are usually visible on a manual review of the slide.
I've had consistently high absolute monocytes (>1500 cells/uL) for several years before treatment, and now for 10 months of treatment. The highest they got was over 10K in the months before treatment.
Now , mine are barely high at about 1000. But still, I wonder about it. I've asked about it at NIH, Tulane, and now M. D. Anderson. It arouses no curiosity. The usual answers are chronic inflammation or infection.
The ranges on blood tests were not established based on likelihood of illness. They're simple statistics where 95% of of some population of people are in the green, 2.5% are below, and 2.5% are above.
Are you on the Venetoclax ramp-up, or is 50mg the dose they arrived at after having some sort of adverse reaction?
I do indeed have CLL, even if the CLL cells are no longer detectable via flow cytometry or clonoSEQ testing. My clonoSEQ report will only admit that I have less than the 1 possible CLL cell in 1 million White Blood Cells. (1 in 10^6). I recently saw where the latest estimate of WBCs in the average male human body (73kg/160lbs) is 1.8 times 10^12 - that's 1.8 Trillion cells. So there's room to perfect the accuracy of clonoSEQ. But they probably don't want to ship all my liters of blood to find out. They can't even find any normal B-cell via Lymphocyte Subset Flow Cytometry, which is probably less than 1 B-cell out of about 100K WBCs. I'm not sure how deep they test you.
Looking back through all my data, back in 2011, I had high monocytes at 1880 cells/uL, and later they dropped back below 950 at Quest Diagnostics. That was probably an infection.
My monocytes spiked with COVID last year to over 18K, but was still 6680 3 months later at M.D. Anderson. It went down 3 months later to 2080. It was 8600 3 months later, the week before I started treatment. It's still unclear how much of that COVID spike was due to COVID and how much due to CLL.
It fell to 0.09 a week after my first infusion of Obinutuzumab and a week of Pirtobrutinib.
It bounced within normal for a few weeks, and then went just above normal at 0.78K to 1.054K.
MDA's range was 0.07 to 0.7K cells/uL up till my 07/11/2023 test,
when it changed to 0.24 0.85K cells/uL
Quest's range has been 200 to 950 cells/uL for years.
Different instruments, which cite different references from the literature.
In any case, a severe infection with associated inflammation might take things up a whole lotta K. My COVID lasted 3 weeks of COVID antigen tests, but I had a month and a half of antibiotics to clear a secondary staph sinus infection. I went to see an infectious diseases doctor to see if I was finally over it, because I still had hearing problems. He did a Procalcitonin test, which was negative for a large infection. A month later, I went to M.D. Anderson for a workup by Dr. Philip A. Thompson, and it was still 6680 there. My Lymphocytes were also shooting up and then back down some (but mostly up).
My latest at MDA was 1.35 K (range 0.24 - 0.85 K/uL).
I look forward to hearing how your upcoming tests go.
Hello SeymourI am glad to hear your CLL is, controlled. Sorry to hear how hard you had it with Covid.
Thank you for your very detailed note.
I used Venclexta after relapse from 5 years of Ibrutinib. I was on Venclexta for one year at 200 mg (could not tolerate higher dosage) . After the year I had a bone marrow and NO CLL cells found.
Stopped Venclexta and after 2 years CLL reappeared. My current Doctor believes that given my age, 76, his preferred approach is to find the lowest dosage of Venetoclax that controls the CLL.
It was all working well with normal Lymphocyte and Neutrophils. Until this week when the labs showed monocytes shot up from. 08 to 1.08 with WBC 6.97. This rise was in a 3 week time frame.
Thank you again for writing me, it was very helpful to know that perhaps the Monocyte change does not have to be CMML.
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