looking for advice

[Steve_Essex]

hi all,

I’ve had a couple of blood tests over the last month or so.. one related to my ongoing surveillance, and one via my GP related to fertility…

both highlighted increased monocytes borderline high 0.81 and 0.86 respectively and 10.8 - 11.2% of total white blood count

Everything else apart from platelets within expected ranges…

do any of you consider monocyte count an important aspect to monitor.. I know the count can spike based on infection etc.. but generally been feeling fine. I’m also mindful of the limited but slightly alarming research indicating poorer prognosis for polycythemia with continued high leukocytes.. as well as a trend increase in monocytes could be an indicator of some form of progression..

I’m also mindful it could just be a temporary spike,

Have any of you experienced elevated monocytes as part of your ongoing management of your MPN? And is this something you’ve discussed with your specialist?

I plan to follow up as part of my next appointment, just wanted to get people’s views in the interim..

thanks

Steve

[ainslie]

I think your Haem will not be at all concerned, as you note many things can elevate monocytes often temporarily. I wouldn’t be too alarmed by what you may have read about high whites and progression. It also depends what one means by high. Most with MPN will have elevated whites sooner or later if not on meds. Mine were 23 in 2017 before starting Rux, now they are around 4. According to recent BMB I have no progression, in fact looks like the opposite. I know others with high whites and no progression and vice versa. For a few years after diagnosed I obsessed when my whites went from 10 to 11. When I look back at that now 10 or so years later my regret is all the time and energy I wasted worrying about it when it achieved nothing except waste valuable life time. Of course hindsight is great but there is a message there. We have to be alert and careful of course and get the best doc we can find but must try to not waste too much of life sweating the smaller ones. That’s what I would try to tell my younger self but I know it’s easier said than done 😀

[Steve_Essex in reply to ainslie]

ah that’s great, thanks so much for taking the time to respond - I shall def take your younger self’s advice on board!!

[finlay2106]

Hi Steve,

Having done a quick search and found a document from Tunbridge Wells Hospital and also looking at some data from my blood tests with a private screening company called Bluecrest, both indicate a normal monocyte range of 0.2 - 1.0 x10^9/L. Therefore you're within range but just a bit near the top of the range but still ok. This is not something my hospital monitors (or at least doesn't bother to tell me). I don't think you should put too much weight on one set of results and as you say it's the trend that's more important. It may well also be that blood test results are not entirely accurate (I've been told this) so again maybe best not to get too stressed about this. Certainly discuss this with your haematologist at the next appointment to help your understanding but it's probably best to take a broader view of all the blood count data. Based on my experience the results can bounce around for no apparent reason sometimes and it's the general trend that matters.

Paul

[Steve_Essex in reply to finlay2106]

Thanks Paul! I think given there’s not much literature out there specifically on this it suggests it’s probably also not an important factor to monitor… I’m going to relax about it.. and have an informed discussion at my next appointment to better understand what counts are key… and should be monitored versus those that are ‘noise’

Thanks again!

Steve