Wow, just happened across this comprehensive and impressive resource for anyone new on the road re ET, PV or MF. Thanks Chicago!

[Magentas]

Sure beats those pathetic booklets, pamphlets or directions to sites made for juveniles, or beyond even. nccn.org/patients/guideline...

[JediReject]

Hi again ! As you say this is comprehensive. . . . . it sure knocks into a cocked hat the wee booklet I was sent away from Haematology clutching with the words " this will tell you all you need to know for now" ringing in my ears. Admittedly was many years ago and hopefully they are more informative now. Chris

[IrishSarah]

That’s fantastic! Thanks for sharing 💚

[Whitehair51]

Awesome!!

[socrates_8]

Well spotted Jaqui...

Comprehensive MPN write indeed...

Cheers & thanks for this...

Steve

[Magentas in reply to socrates_8]

You’re most welcome, Steve. Hope you’re doing well.

[Joetcalr]

That's amazing, I don't know what to think now. According to this I should have been on aspirin only for last 5 years, instead of hydroxy, followed by interferon. It has no mention of actual platelet counts (I have ET, pl 1600 at diagnosis). Wonder whether platelets continue to go up if there's no treatment, and how much does that matter? They don't stay in the blood for long, so that must limit the danger.

I'll be asking my haematologist at next appointment.

[Magentas in reply to Joetcalr]

Hi Jo, all I can say is I find it incredible how well so many people can tolerate that poison and that if it was me I’d definitely try INF in the hope that it kept fibrosis at bay. The platelets are still a conundrum for me, and understand your thought that ‘does it even matter’, well, to a point, I guess. All I can say, once again, is that mine have risen fairly evenly for the past 5 yrs (but I think they’re speeding up this past year) but luckily have only maxed out at 800.Interesting what you say regarding them not staying in our blood for long. And now you’ve got me thinking about the over production of platelets out of our marrow and enlarged spleens and/or livers! Oh, boy, it’s never ending this stuff.

Really hope your haem can do some research, best of luck.

Thank god for Aspirin!

P.S Have a look at member MPNBlog’s first ever post.

[Magentas in reply to Joetcalr]

I found some interesting points here, just under the first photos. link.springer.com/article/1...

[MPNBlog]

Hi Magenta. This booklet is updated from time to time (used to be annually) and a new edition is due out so keep your eye out for that. It is from the National Comprehensive Cancer Network in USA. So it has a USA flavour. I do find it helpful but I find it somewhat conservative because it is approved by a panel, so consensus is needed on the content eg information on Pegylated Interferon was originally a bit slow in being added. The panel members are listed on page 64. But it is comprehensive and informative. They produce information guides on a large range of cancers if readers have other issues or relatives with other cancers: nccn.org/guidelines/category_1

[Magentas in reply to MPNBlog]

That’s all great stuff to know, including the acronym, thanks very much for that and the link, M.

[katiewalsh]

Hi. I’ve relied on this resource for years & also am impressed with its comprehensive in-depth coverage. I think it’s useful even to refer to periodically over the years as knowledge changes. Thanks for posting it for others. I didn’t know how to post links.

[Magentas in reply to katiewalsh]

Mm, yes, good idea, Katie, thanks, I’ll definitely be checking in on it then.Please feel free to message me and describe what it is if you ever feel the need to post something here.

[katiewalsh in reply to Magentas]

Thanks. Unfortunately I’ll probably forget that you’re the person who offered!!

[Magentas in reply to katiewalsh]

Ha, I know, it’s all such a lot of work these days, remembering things!

[jmctrek]

Very comprehensive, thank you for sharing!