New evaluation: nature.com/articles/s41408-... - MPN Voice

MPN Voice

10,445 members14,398 posts

New evaluation

Gesha profile image
8 Replies

nature.com/articles/s41408-...

Written by
Gesha profile image
Gesha
To view profiles and participate in discussions please or .
8 Replies
Rachelthepotter profile image
Rachelthepotter

Thanks for this, Gesha. Its very clear. R

Paul123456 profile image
Paul123456

It is amazing, and worrying, that no consensus amongst the experts. Tefferi is a brilliant, highly respected Hem, and clearly sceptical as to whether Interferon has any material impact on progression. He favours HU as front line treatment.

The counterpoint is expressed in this Open Letter from two other highly respected Hems. This is dated 2014 but my understanding is that both remain as committed to Interferon.

mpnforum.com/an-open-letter

Is the difference that some Hems (ie Tefferi) are governed strictly by clinical data and there are no long term Interferon trials to draw from. There is only word of mouth from the likes of Dr Silver etc.

Also, Dr Silver advocates Interferon as an early stage treatment, eg replacing venesections for under 60 yoa PV patients. Hence his personal experience may be very different to say Dr Tefferi who treats with venesections and then HU and then INF if not responding to HU.

My belief is that there are three camps of Hems, pro HU, pro Inf and a middle camp who say Inf/Peg may slow progression but want over 5 years of good clinical data before they are convinced.

Ovingite profile image
Ovingite in reply to Paul123456

Hi Paul,

Thanks for pointing out the open letter from Dr. Hasselbalch, which I had not seen before (pre-dates my diagnosis). I agree that it is worrying that the "experts" don't always agree, but it is by no means uncommon for academics to insist that their path is the right one and all others are false. I noted that at the last MPN Day in London, when asked to confirm whether or not MPNs are cancers, all of the panel confirmed they were - except for the German doctor (whose name I have forgotten) who stated it was not.

In the real world, most of us are likely to be treated by generalist hemos that are not MPN specialists and are probably blissfully unaware of the latest advice on MPNs. I think I find that more worrying than warring professors. Thank goodness we have MPN Voice!

John

Stanley28 profile image
Stanley28

a really important paper - thank you for sharing :)

Ovingite profile image
Ovingite

Gesha,

Thanks for posting this - very interesting, albeit hard going for anyone not medically trained.

I found it particularly interesting that "platelet count per se should no longer be used for risk stratification in ET" which I take to mean that our fixation on tracking platelet counts is perhaps a bit OTT.

I was also relieved to see that "hydroxyurea, combined with once-daily aspirin therapy, remains the standard of care for contemporarily classified 'high risk' patients", so that's a tick in the box for me.

John

ChelseaF profile image
ChelseaF

Personally, as one who is highly symptomatic, I am disappointed not only in the lack of a consensus but also in the fact that so little mind is paid to quality of life when it comes to any of these kinds of papers.

katiewalsh profile image
katiewalsh

Thank you so much for posting this. The author is considered the, or one of the best researchers and author of scholarly medical articles. Very helpful & different than what I’d been told. Katie.

johoho profile image
johoho

Thanks so much for posting this. I'd be interested to see how long it takes for the research to hit actual practice, these things take some time it seems. For example Peg interferon isn't yet available widely yet.

You may also like...