Monocytosis?

[Vlaminck]

Hey folks, I searched but saw no other posts on this. Yesterday had my 6 month check up, new doc, didn't review tests with me but summarized. This morning I saw online that my monocytes have gone sky high (2.0 versus .4 etc.) registering as high on the test as well (in fact, they spike to the same degree my WBC does). I asked today by message (only way to communicate) if I can talk to doc about this but have gotten no answer. Anyone else have this? The internet only gives things like tuberculosis, syphilis, and OTHER blood disorders as possible causes. Think I can knock out the first two -- but what? Any suggestions? Thanks

[SeymourB]

Vlaminck -

I've had monocytosis for 5 years now. I'm in year 11 of Watch and Wait. Sometimes I get high eosinophils or basophils, too. My latest results from M.D.Anderson showed:

70.98 K/uL Absolute lymphocytes

6.68 K/uL Absolute monocytes

Nobody seems the least bit concerned, despite repeated questioning. Both MDA and NIH have seen them. Really, one cannot diagnose anything from blood tests alone. Blood tests only raise suspicions of other things, which hematologists often waive off or investigate further after seeing flow cytometry.

It could be an infection or inflammation. But then, they don't do anything unless you have other symptoms, such as swelling, pain, or fever. But do mention it to your doctor.

For me, it started right after a major sinus infection that indirectly led to a gall bladder attack due to chicken sausage gumbo with a little turmeric, plus french bread and butter. The sinus infection lasted a couple of months, and I had the gall bladder out. But the monocytosis persists to this day.

I've also got activated lymphocytes, which only show up on some types of blood instruments and manual review. They're probably T-cells. I have high numbers of T-cells in addition to my B-cells, judging from CD4 and CD8 vs CD19 counts.

I'm hoping to get into a pirtobrutinib plus venetoclax plus obinutuzuman trial. Still waiting on details from MDA.

Best of luck,

=seymour=

[Vlaminck in reply to SeymourB]

Thank you, Seymour and very, very interesting. And comforting to know it can be something other than super serious (presumably). And yes, doctors seem to ignore anything next to the specific they are testing for (lymphocytes and WBC). So though my doc would have/should have seen this, didn't mention. I'm intrigued by your reference to "activated lymphocytes" -- I don't think I've heard that term before.

[Classicaljazz in reply to SeymourB]

Hi SeymourB,

Can you check your lab results for the past 12 months and see if your monocytes have gone back to normal range since you started obinutuzumab? I noticed that my two-year long monocytosis went into normal range the day after my first obinutuzumab infusion and stayed normal for over two years until this month. I am trying to figure this out.

Thanks in advance!

[SeymourB in reply to Classicaljazz]

Classicaljazz -

I finished Obin back in July, 2023.

My monos came down from 8.6K/uL a week before treatment to 0.36K 3 days after my C1D1 dose of Obin. I never did do the C2D2 dose due to infusion reaction and laboratory TLS. I was also on 200mg/day Pirtobrutinib.

They've stayed within normal or just above since then. The highest was 1.42K while I was in hospital for an infection in December, 2023. They went back down to 1.086K a month later.

My latest - my final test during treatment - was 1.17k.

I normally got tested every 2 weeks, with weekly tests during Venetoclax ramp up. 16 of those tests showed normal monocytes. 19 were above normal.

=seymour=

[Classicaljazz in reply to SeymourB]

This is fascinating SeymourB-- Mine were always 1,1K/uL but up to 6K/uL with severe infection. If it stays over 1K/uL MD said he will schedule a BMB. Thanks for your reply!

[SofiaDeo]

Mine have gone really high for 3-4 months at a time. Like, levels 9-10 with the reference range being 0.2-1.0.....No reason "why" was found. I figured I was exposed to something viral & my body was reacting, who knows for sure. Maybe my body was fighting off defective CLL cells, maybe they rose in response to treatment killing CLL cells. Maybe my body was making macrophages for tissues. My specialist wasn't concerned. I didn't have any change in symptoms.

Bone marrow that's been highly infiltrated may spurt them out for a while, when it's recovering from CLL infiltration.

[Vlaminck in reply to SofiaDeo]

Thank you, SofiaDeo. As I said to Seymour, it's comforting to know this isn't totally uncommon. I do know mine isn't in response to treatment as I'm still in W&W and nothing has changed that I know of other than, of course, increasing lymphs and WBC (and decreased platelets). Did wonder if it could be some kind of slow-moving Covid, as I have had definite exposures and never tested positive. Thanks to your response, and Seymour's, I'm just going to go back to sticking head in sand as I'm doing with my literally off-the-chart B12 test results today (just said >2000; normal high is 800 or less) ) which also concerns me but can't seem to interest any docs. Onward!

[Shepherd777]

My wife has had her monocytes jump from the regular numbers of 200 to 800 in a month to 4600 and stay high for 6 months. It was not covid, nor was she sick, however there are times when her IBS acts up and they thought the intestinal inflammation might cause the high numbers. However, there are times when the IBS is so very bad, and her monocytes are normal.

[Vlaminck in reply to Shepherd777]

Thank you, Shepherd. This is all a bit mysterious. I hope her IBS is doing well/better presently.

[Lavinia-Blue]

My monocytes jumped a couple of months ago after starting treatment. The Doc and team are not worried. They said something similar to SofiaDeo “Bone marrow that's been highly infiltrated may spurt them out for a while, when it's recovering from CLL infiltration.”

I recently posted on this issue about a month ago. “Monocytes and therapy, or not.”

[Vlaminck in reply to Lavinia-Blue]

Thanks, Lavinia-Blue. Missed it in my search using "monocystitis". I have not started treatment, so it's likely something else.

[Lavinia-Blue in reply to Vlaminck]

Well, I hope it's nothing, or at the very least minor. 🤞

[Vlaminck in reply to Lavinia-Blue]

Thanks, me too!

[SofiaDeo in reply to Vlaminck]

I wonder if it's possible our bodies are putting out monocytes occasionally in response to viral and other challenges, since we have abnormal lymphocytes. Like, you are getting exposed to adenoviruses and whatnot. Or other things found in the air, like Aspergillis if you have been working in the yard. Or exposed to air containing spores from a neighbors' dirt blowing around on a windy day, or the molds/mildews found inside & out.

[Vlaminck in reply to SofiaDeo]

Thanks for thoughts. Yes, could be. However, as I've had intermittent epstein barr, and I've been feeling fatigued for last week and half, was sure that was it, but the test came back negative and whatever it is, it's not a few-day thing unfortunately.