2016 WHO diagnostic criteria for MPNs

[Rachelthepotter]

Hi This is a link link the current diagnostic criteria for MPNs. Its from Nature.

nature.com/articles/s41408-...

Regards

[bruddery]

Thanks very much for the link - very interesting article. Bruddery

[EleanorPV]

From what I understand, these guidelines, are what the USA follow. Not what the NHS follow. For the UK best to look at MPN voice.

[Lab-Rat]

Thanks Rachel. This article again highlights that Jak2+ ET may in fact, for some, be pre-MF, and that protocol now = gene testing+BM biopsy at diagnosis to distinguish between ‘true’ ET and pre-MF. Because I am Jak2+ I was told at diagnosis (ET) in 2016 a BMB was not necessary. I was happy with that because that was the thinking at the time. However, this article clearly shows that this is no longer valid. I think I will take this up with my oncologist at my next appointment.

[Superwoman]

Thanks for that Rachel, very interesting took me an hour and half to read, now very confused, as it seems to say the I should of had BMB when I was diagnosed, even though I had the JAK2 mutant test done and that it confirmed I was ET JAK2 Posative, am going to mention to my Haematologist next month even though I have asked him before if a BMB was needed and he said no as my ET was proved by the rest, but in the meantime I wonder if Maz could ask the question of the Professor.

Wish I had a medical mind as there was so much technical terms it was mind boggling and if not a little confusing, but thanks all the same.

In the meantime I will keep taking the tablets. 😉

[Lab-Rat in reply to Superwoman]

Protocol at that time was if positive for Jak2 with high platelets then that was deemed sufficient for a positive diagnosis of ET. So your Haem was not wrong, merely following protocol of the day. However, as science progresses/evolves a better understanding of MPNs emerges: the existence of pre-MF is now recognised, it is also recognised that it may mimic ET and therefore new protocol is BMB+gene testing. Jak2+ ET may also be masked-PV, so to distinguish between "true" ET, pre-MF or masked PV a BMB is now deemed necessary by the authors of the article, Barbui et al. (2018), to discriminate between the 3 conditions.

[Ovingite]

Thanks for posting this Rachel. It raises a few questions about how MPNs have been diagnosed. I was diagnosed ET JAk2 last year but have not had a BM. As it happens I have a phone consultation with my hemo on Tuesday so may mention this &see what he says.

So much to learn 😊 but I'm getting there.

John

[Lab-Rat in reply to Ovingite]

Hi John, please let us know what he says. I think it is going to take some time for the approach of BMB+gene testing advocated by those at the forefront of MPN science to filter through to the general MPN/medical profession.

[Ovingite in reply to Lab-Rat]

Will do. I suspect my hemo team are not MPN specialists so I'm not expecting too much, but I can at least make sure they are aware of the new guidelines, though I need to be careful not to tread on toes.......

I will keep you posted

John

[Ovingite in reply to Lab-Rat]

Well I had my consultation today as planned. The good news is that my platelet count is continuing it's downward trend (now 424), not so good was the response to the new WHO guidelines for MPNs! In fairness my hemo team make no claim to be MPN specialists, and sometimes it shows, but I got the impression that the new guidelines won't be on their radar anytime soon. For the time being it's not a problem as the treatment program seems to be working well, but it would be nice to have an established baseline in case my ET changes in future.

Cest la vie!

John

[Lab-Rat in reply to Ovingite]

I am so pleased for you that your platelet count is moving in the right direction! I sort of anticipated you might get a less than enthusiastic response to the new diagnostic guidelines, and I suspect I will too. I agree, although not keen on having a BMB, it is useful as a baseline, plus the added assurance of confirming that what we have is indeed true ET, and not pre-MF or masked PV. I had a white blood cell count > 11 (a pre-MF criterion as per the new guidelines) together with high platelets at diagnosis so now at the back of my mind I can't help but think what if... Anyway, thank you for reporting back.

[PamelaNC]

Thanks for the link Rachel - good information. Pam

[Aime]

Thank you Rachel. Can I just ask Maz if she could ask for confirmation of the requirements for a BMB in case in my layman’s capacity I’m reading this wrong. Is a BMB now recommended to reach a PV diagnosis and also to use as a benchmark later on as the disease progresses?

Thank you Maz, sorry to ask that question again - I know it’s come up recently but just wondered if these recommendations change things.

Kindest regards Aime xx😺😺