New to this....!

[Gregorcat]

Hi all, I’m looking for some advice please! I was diagnosed with ET, triple neg in August of 2018 and am off to see my heamotologist today for the results of my first BMB which I had two weeks ago! I am just wondering can they still say I have ET if the BMB is clear? Is there anything I should be asking today? Currently only on baby aspirin but iron levels dropped dramatically in the last month as well! Thanks for reading! Xxx

[Rachelthepotter]

Hi Gregor

Best to ask your haem what the full picture is - but so far as I am aware you can have ET with a clear bmb -if the bmb shows fibrosis then that leads to a positive diagnosis of MF. Which is how it went for me.

Do keep us posted

Rachel

[WileyFrench]

Hi Gregor - I have ET with no mutations and my BMB has no fibrosis but did have other “indications” of ET (larger cells, clumping together) and so that was my diagnosis. When you see your haemo today ask any questions you have - I found it helpful to write them down and take them with me, and also to write down the answers!

[Sarahjane100]

Hello, this is sarahjane. May I ask, how were you diagnosed with ET, if you are triple negative and do not have results of BMB yet? I too had suspected ET, triple negative, but when I went back for results of BMB, I was told it was clear and discharged from outpatient care. My highest platelet count was 590. Now I worry that I do have ET, and at risk from thrombosis, heart attack or stroke. Best wishes, sarahjane.

[Cja1956]

This might be a silly question, but what is triple negative ET?

[Sarah_786 in reply to Cja1956]

It means you have ET without being positive for any of the main mutations- I think JAK2, CALR and MPL