Bone marrow: Afternoon from sunny kent ! Does a... - MPN Voice

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Bone marrow

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Afternoon from sunny kent ! Does a true diagnosis of ET or PV mean a BMB, is done to most people with elevated platelets and jak2 postive results πŸ˜™

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Oh i see , guess it will need to be done at some stage 😞

mol56 profile image
mol56 in reply to

I had a BMB to confirm the diagnosis of E.T. A t the time (10 years ago), JAK was not routinely checked. I am JAK negative. The BMB was not very painful, uncomfortable for a short while.

in reply to mol56

Yes it been a concern on my part that consultant may suggest i have one , i have heard so many horror storyies about a BMB in past , not from this site i must add , but now im jak 2 postive and mt platelets still rising my other blood cells okay at moment just platelets so well see... but up till now its this ET , thank you all for replys. rgard Holly

Paul42 profile image
Paul42

My understanding is its not always necessary now, if JAK 2 + or CALR and symptoms seem typical of PV/ET then a diagnosis can be made without.

A BMB may be needed if there is any doubt to the diagnosis.

in reply to Paul42

okay thank you Paul42

piggie50 profile image
piggie50

I was diagnosed with PV Jak 2 positive, 9 years ago by blood test. I only had a bone marrow biopsy 18 months ago to provide a baseline before starting Hydroxicarbamide.

Kind regards

Judy

okay Judy thanks for that best regards Holly

bordeauxgirl profile image
bordeauxgirl

I am PV with Jak2 pos and on Hydroxycarbimide every day but the doctors have not mentioned BMB so maybe it doesn't have to happen in all cases, I wonder why?

So often the Hemos are shaking your hand good-by before you make yourself comfy. That's when I get shirty. Not enough info at any of my monthly consultations.

in reply to bordeauxgirl

Yes its been a bit like that with me ! im just wondering if for me being early diagnosed if it be done further down the line , my bloods being monitored regulary and will start the hyrocarbonide end june i have had info given to me on that drug ! regards Holly

JediReject profile image
JediReject

Hi Catwoman I think Osidge is on the right line as Im fairly sure if you had MF you would have had a BMB as standard to aid accurate diagnosis. . Or if there are any signs that your PV or ET is transforming to Myelofibrosis. I have just asked for a BMB as a measure of the progression of my MF. . I'm not sure there was much of a sample when I had my first one and Im hoping it isn't what's called a dry tap as this could suggest the level of marrow fibrosis has got much worse. Good luck to you and Im sure you will be OK on the Hydrox...

Regards JR x

in reply to JediReject

Very kind of you , thanks RJ makes sense what you say πŸ‘

JediReject profile image
JediReject

Hmm cheers thats a first. . you are lucky as that means I haven't yet imbibed enough 'falling over juice'. . . ''Oi - another tinny please missus and don't throw it this time''. . . OUCH

in reply to JediReject

Haha , but meant to say good luck for your bmb results

JediReject profile image
JediReject

Aye thanks for that Im sure I'll 'man up' for it. It's not summat I ever thought Id volunteer for but I need a full assessment of precisely where my MF is at after almost 9yrs and owt that fills in the picture for those folk making the assessment is all to the good. . . Ah Happy Days.

lizzziep profile image
lizzziep

I was scared of having a bmb, however the worst part was when the doctor doing it asked whoever was assisting for a bigger "needle thingy" (I don't know what they're called) - a longer one was needed to get through the "padding", shall I say, on my ample hips!! It didn't hurt, a bit uncomfortable for a very short time, and they gave me gas and air so I didn't care anyway! I had my diagnosis of ET confirmed by the BMB. I am JAK 2 negative. Best Wishes to all.

in reply to lizzziep

Ha bless you Lizzziep, made me chuckle , and although im slim im very hippy pear shape i think the word is im okay even with blood tests longs i dont look hehe regards Holly x

When I was diagnosed nearly 7 years ago I was told that my blood tests were ambiguous although I had platelets over 1,000 so a BMB was needed for confirmation. Turns out I am jak2 neg. but I do have ET. My haemotologist says that BMB are not so common now for diagnosis because of advances in the tests. It was a bit uncomfortable but not painful. No gas and air in my clinic.

okay thank you

Hi they were 510 at last bloodtest up till last year my platelets were always normal in 200 range so steadly been rising rest of blood okay at the moment

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