What is an MPN Specialist?

[PVReporter]

One simple criteria - mpncancerconnection.org/201...

Hope you find this helpful.

Best,

David Wallace

PV Reporter / MPN Cancer Connection

[Aime]

Thank you, that is very interesting. Kind regards Aime

[Loubprv Volunteer]

Hmmmmm, don't think that there is much there that we weren't already aware of.

I would imagine that half of it would frighten anyone quite needlessly who might be newly diagnosed. Just goes to show how important it is to refer to sites such as mpnvoice.org.uk for a more lengthy and down to earth synopsis.

If you are reading this and think that you are imminently in danger of collapsing in a heap with a thrombosis, myelofibrosis or leukaemia, I would seek further reassurance that this is unlikely to happen providing your blood counts are well controlled, which if you have a good haematologist they will be.

Louise

[Aime in reply to Loubprv]

Hi Louise, I was taking the findings that there is no correlation between blood counts and strength of symptoms which I had to tell my haematologist when I was first diagnosed as he didn’t believe me.

I also took from it that although there is a risk of thrombotic events, they shouldn’t happen if we are monitored and blood counts controlled.

Perhaps I am taking in the information incorrectly but I also think that everyone should know the risks of such events and that the risk of leukaemia developing is small so that they can look after themselves properly and speak up if unhappy with their haematologist and have the knowledge and confidence to ask for a second opinion.

Kind regards Aime xx😺😺

[PVReporter in reply to Aime]

Bingo Aime, I have seen 6 doctors over my MPN life. The first 5 were never published, didn't know Pegasys was a treatment option for PV (really ?) and attending ASH was not on their agenda. My present doctor is published, is involved in clinical trials, attends ASH yearly and is up to date on all the latest treatments. He is an MPN expert.

Best,

David

[katiewalsh]

Hi David,

Are you able to post a link to the ASH conference report on ET & also MPN’s in general? I tried finding it from the sight/link you posted but failed. Thanks for whatever you can provide.

Katie Walsh

[PVReporter]

Hi Katie,

You can search all of the abstracts here - ash.confex.com/ash/2017/web... - in the search box.

Hope that helps -

Best,

David

[Bluetop]

Thanks for posting. Interesting to see where focus of research seems to be developing.