How high is your WBC in polycythemia vera?

[Xuzy]

Hey all how often does your WBC fluctuate. Mine hover around 8 to 14 They say some variations is expected in pv but when should we really be concerned to ask the doctor about it?

Especially with regards to progression how will it reflect?

[ainslie]

Your counts are pretty normal and not to be worried about in my opinion, when first diagnosed I was worried when mine rose to 11, when they eventually got up to 24 I laughed at the idea of me worrying about them being 11, in other words try not to spend time worrying about it too much, most haems would be happy with those counts bearing in mind at 11 they are still in the normal range in the UK anyway.

[Xuzy in reply to ainslie]

I see. My level went crazy high at 18 once. And different labs tend to show different ranges. I repeated the same test in another lab my level dropped to 8 again. Is such fluctuations expected then? Or there's a steady trend towards rise?

[ainslie in reply to Xuzy]

whites with PV if not on meds can tend to trend up very slowly, mine went from 10 at diag and after 7 years of venisection and aspirin only they rose to 23, then I went on Rux and they are down about 5 now. Also with PV we are more prone to whites jumping around (temporarily) more if any infection or anything that would normally cause a rise in whites, again more so if we are not on cytoreductive meds

[hunter5582]

We can certainly experience leukocytosis with PV, but for other reasons too, most notably an infection. Interpreting a bump up in WBC requires looking at the individual leukocyte numbers (e.g., neutrophils, lymphocytes, etc.). It also requires looking at the rest of what is going on in the body, including what medications you are taking.

It may not be anything significant going on. Suggest you mention your concerns to your MPN care team to get an accurate answer. Perhaps as "What does this kind of variation mean?"

All the best.

[Maisie10]

mine have always been high since being diagnosed 8 years ago. Always between 17 and 21. Consultant not worried. Take care

[KLCTJC]

mine were fine and then started rising last year. But even though no one can prove it, mine started after getting sick from Covid booster. Then I found out I had MS. Which can raise wbcs too. So like others have said may be an underlying inflammation or something else. Doesn’t take much for PV patients wbcs to rise. My MPN doctor was never freaking out. They did put me on Besremi and my wbcs after even intro dose fell from 13 to 6. But wbcs can fluctuate naturally. In my career I have seen normal patients have high wbcs then recheck and they were fine. Lots of things can affect them.

[Yanks7 in reply to KLCTJC]

My WBC has gone down (13.6 - 6.3) since PV w/Jak2 diagnosis November 2022 at age 73. After phlebotomies every other week for approximately 3 months, plus HU starting at 500mg/day and peaking to 1500mg/day, then reduced to 1000mg/day, my blood results have moved significantly: WBC - 13.6 to 6.3, RBC - 8.36 to 4.69, HGB - 21.8-13.6, HCT - 66.9-43.7.

I'm now on 1000mg/day for 6 days/weekly, with aim of avoiding overshooting the targets. It will be interesting to see what fluctuation occurs after we "stabilize" medication. Now that I seem to be in "control" of my condition, I'm interested in learning more about treatment options for optimum long-term outcomes, i.e., preventing advancement to more serious condition.

[EPguy in reply to Yanks7]

I like that idea of avoid overshooting. Many Drs are not with that.

[MWxxxx]

Mine are 40. And I am on Hydroxy.

[EPguy]

Mine was a bit strange, from Dx it went to normal range - before I started HU, the 3rd point in this plot. My HCT did sort of similar.

The lowest point was on 1000/day, too much HU. It's been low range or under range on HU then Bresremi, I'll see result on Rux soon.

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Very high levels have been seen as a thrombosis risk, So it's similar to effect of high HCT in this case but seems a less well defined cut off level.

But a good quote is in this report- We and our Dr need to see the full picture:

"We should be moving beyond the conventional risk models, and start to include additional factors—whether we're talking about blood counts, allele burdens, even lymphocyte counts,"

onclive.com/view/link-betwe...

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I've not seen a study on progression vs WBC. If there is one it would be good to know.

WBC at Dx

[Xuzy in reply to EPguy]

Thank you for the info but isn't it an agreed fact that increased WBC pose risk to evolution? Along with the thrombotic risk that doesn't have a rule but could be at 13 to 15?

[EPguy in reply to Xuzy]

The WBC levels you have are in the range of risk for the study I noted. On progression, do you have some reports on the connection? Maybe other members also have?

Some familiar progression risks have focused on the mutation. Certain non-driver mutations have such associations, and mutation level is associated in some studies. But Drs and experts do not all agree on these findings.

[mhos61 in reply to EPguy]

I’m sorry if I’m hijacking this thread. It is still in relation to WBC, but in ET, not PV.

EPguy, wondering if I’m interpreting this correctly. You have a way of explaining things…

In this 2016 video clip Claire Harrison speaks about the various findings in this particular study. She notes that all of the ET patients who transformed to MF had white blood counts below 10, which was counterintuitive to what she expected; I’m not sure if this is at baseline before treatment or whilst on treatment. I welcome any input.

My baseline wbc at diagnosis was around 6!

google.co.uk/url?sa=t&rct=j...

[EPguy in reply to mhos61]

Some thoughts, not too well arranged. I'm not feeling well lately.

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Her expectation that high WBC correlates to progression suggests she knows of data that show this.

On the low WBC connection, it was found in a "post hoc unplanned analysis". I think this derives from Table S6 where they looked and found no progression with WBC > 10, so by deduction all progressed pts were less than 10. But table 1 shows few pts were over 10 anyway, (consistent with pure ET I think) so any events should show in this group. All refs seem to be baseline.

In sum on the low WBC-Progression connection, it looks flaky to me.

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Another flaky item:

"The mean baseline allele burdens for JAK2V617F, CALR, or MPL mutation-positive patients are displayed in Table 1." Not correct, this data is not there. Only divided by <> 50%.

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The study looked at only 2 years, progression studies over that short time are not that useful. Progression was similar for both HU and Rux(25-30%) Quite high for 2 years. In a more recent study for Rux I posted, having a VAF 50% influenced transformation, so old and new studies fairly match here

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The study was limited to pts with intolerance or resistance to HU. This, according to Drs. Gotlib and Harrison in prior posts, are associated with ~5X higher rates of bad outcomes (Hoping to find out where this comes from) and could explain the high progressions.

"We confirm that HC-resistant/intolerant ET patients (all of them here) have a high risk of thrombosis, hemorrhage, and transformation to PET-MF, event rates here being higher than reported in the nonresistant/intolerant patients (eg, PT-1 or ANAHYDRET studies)"

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This is the full study I believe:

That study looked at only 2 years, progression studies over that short time are not that useful. But she notes it was 100% of the progression in the lower WBCs. (not that all low WBCs progressed) There were substantial number of progressions on Rux (9/35 [25.7%]). Table 2, so at least this study points to Rux being risky in ET.

This is the full study:

ashpublications.org/blood/a...

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The other note, that molecular response did not correlate to clinical is consistent with other info we've seen. But 2016 is a long time ago, and evidence is increasing that lower alleles and absence of certain non-drivers correlate to less progression. But of course some pts are stable for years with high Jak2 alleles.

[mhos61 in reply to EPguy]

Thanks for responding at this particular time, it’s much appreciated.

I obviously missed the important bit, that all patients were hydrea intolerant or maybe that’s not mentioned in the video clip. Thanks for pointing this out, as that alone makes sense of the whole thing.

Thanks for the link to the full study too, which I will peruse at my leisure.

Take Care

[Xuzy in reply to EPguy]

I'm sorry i cannot point one specific report. I just google searched progression of mpn and there is one 10 year follow up which showed linear increase in WBC is often associated with risk just as much age is one of them. But like there's no concrete evidence of what is starting or who will go and not go. I did my small research in Facebook group before they kicked me when i asked around those who are living 30 plus years with it they mostly note elevation in platlet is there but not WBC over time which one article does state that platlet is related to thrombosis but not progression and wbc is associated with both. This data is readily available on Google with graphs too.

[EPguy in reply to Xuzy]

I have found some studies on WBC vs progression, it does support a connection at some higher WBC level. Whether to AML or MF is an important distinction here:

ncbi.nlm.nih.gov/pmc/articl...

" leukocytosis (>10 or 15 × 109/l) increases the risk for post-PV MF evolution."

This report is based on two old studies:

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pubmed.ncbi.nlm.nih.gov/182...

2007 "association between group B and leukocytosis using a leukocyte count threshold of either 10 or 15 x 10(9)/L (P = 0.02)." Group B transformed to AML/MDS. Group C was to MF and by omission did not have this risk.

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"leukocytosis leukocyte count>(15x10(9)/L) at diagnosis is a risk factor for the evolution of post-PV MF."

pubmed.ncbi.nlm.nih.gov/181...

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A newer report, 2020:

onlinelibrary.wiley.com/doi...

"Risk factors for leukemic transformation in PV included advanced age, leukocytosis and abnormal karyotype... In addition, JAK2V617F allele burden of >50% has been associated with fibrotic transformation."

They note higher Jak2 allele (>50%) is a risk and "JAK2V617F clusters with (various including)... leukocytosis,"

It could be higher WBCs connect to higher VAF, and which order is the cause/effect might be relevant, ie high maybe VAF is the risk and the cause of high WBC (just a proposal) This is probably studied somewhere.

This report is full of stuff, including the authors consider HU still to be the preferred 1st line therapy. If I felt better I'd go thru this deeper.

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