Possible ET but triple negative

[Scarlett500]

Ive been reading posts on this forum having been sent to haematologist as have high platelet levels. Consultant was quite sure a blood test would come back positive for one of the genetic markers but it didnt. So ive had a ct scan, a gastroscopy and colonoscopy but nonee of those showed anything that could explain secondary thrombocytosis. As a result im off for a Bone marrow biopsy on tuesday. Will this definitely find out if I have ET?I must admit to not listening to what the consultant said after saying i need a BMB.

Also im not due to see him till April as he seemed to think getting the results back takes a long time.

Im in the UK so very thankful to the NHS for all my tests which have happened ever so quickly.

Just wondered if any other triple negative people have got an affirmative diagnosis after BMB

Thanks and sorry for the long post

[stillkicking]

My ET was confirmed by a BMB, and I was later found to be triple negative. I once did have the good fortune of having a tour round our hospital lab with a small group, and was fascinated to see images of bone marrow from people with various MPNs, including ET. I was reassured to see that the ET BMB image was really quite easy to interpret as being ET, and I worried less after that about my own diagnosis. I do hope your own BMB goes well and gives clarity about what is going on in your case.

Very kind thoughts and best wishes to you,

Peter

[Cat1001954 in reply to stillkicking]

I also have triple negative ET confirmed after BMB

[Cat1001954]

hi yes I had a Bmb last year and it confirmed I have triple negative ET.

[Orangemusic]

Hi, I am also diagnosed with Triple negative ET for the past 5 years. I also did the Bone marrow test still there was nothing found. So, take it easy. My doctor told that may be there is some other cause for which research is still going on.

[levismama in reply to Orangemusic]

Hi. Just a quick question…how do they know you have ET without confirmation from a BMB and triple negative?

[Grum1]

Yes I have ET (confirmed via a BMB) and am triple -ve.

[Ssssfamily]

I was diagnosed triple negative by BMB in 2021. Last year my platelets suddenly shot up to over a million and I started having constant pressure headaches, dizziness, and numbness in my arms. I’ve been on HU for 4 months and my platelets are now 433, but my symptoms are the same and even a little worse. I had a new BMB in January and only part of the results are back. So far negative for all mutations. I will know more soon on that, but the doctor is now saying this could be an underlying condition. I’ve been checked for so many things and everything comes up negative. Now I am starting to get short of breath to add to the other symptoms.

Sorry for the long post. I just needed to vent lol. I wish you well and keep us posted on your results.

[Wyebird in reply to Ssssfamily]

I too get short of breath. I love Peg interferon maybe it’s worth thinking about.

[Scarlett500]

Thanks for all your replies. It is good to see some other triple negative people on here. Will update after BMB.

[SuET2017]

also ET triple neg. Diagnosed before BMB. I could be wrong, but I think the gene identification is done with blood test not BMB. My understanding is the BMB is done to check things such as fibrosis level?

[Wyebird in reply to SuET2017]

hi yes you are also correct.

[Franju in reply to SuET2017]

Checks if any mutation is present.

[Maurabawn]

Hi! This is my first post on this amazing forum. My ET was eventually diagnosed by a BMB. I had the classic symptoms of ET and the Haematology dept thought that it could be diagnosed with blood tests but they came back negative. My ET is caused by a protein called MPL which causes the bone marrow to over produce platelets. It can be diagnosed with a specialist blood test but due to the Covid back log in my case, that was taking too long to be analysed so I had the BMB. My platelets were about 1200 by this time and are now about 520 , treated with Hydroxycarbamide and low dose aspirin. Hope this helps and sending you all the best!

[Wyebird]

I think it’s quite normal to home in on something that shocks you and not take anything else in.

It’s a shock to the system.

I believe a bone marrow biopsy will help confirm a diagnosis.

If you have an MPN you have contacted an amazing group. They will support your journey answer all your queries best they can. Sending hugs

[Franju]

It will confirm if you have a JAK2 mutation but I believe the actual form of mpn will be according to bloods.

[Meatloaf9]

The MPN specialist that I see told me that a BMB should be diagnostic - tell you if you have a mpn and which one.

[Phantasia]

I am also triple negative ET.

The BMB will confirm an ET diagnosis if that's what it is. Then they'll test for the 3 main gene mutations.

What treatment you get, if any, will depend on your age and platelet count.

Best wishes to you.

[socrates_8]

Hey Scarlett500...

There are separate Tests for MPL & CALR to help determine which 'Driver' mutation you might have. Just ask for the Tests. We must all become our own best advocates w/ an MPN, in my view...

Best wishes

Steve

[Scarlett500 in reply to socrates_8]

Hi, i have had tests for the three main mutations and was negative for all of them.

[socrates_8]

Hey again Scarlett...

Well it's good to at least know that you are none of the Three (3) better known "Driver" mutations. There are a few other Tests available for a few of the rarer sub-types. However, it sounds like you medical team is working well to cover all the bases thus far... It's hard to remain a "Patient - Patient" at those times...

Best wishes Scarlett, & I hope you'll soon be learning more about your particular MPN (?)

Steve

[Bug68]

I am triple negative and the BMB confirmed that I have ET.

[CalL1981]

I am triple negative ET confirmed by BMB. No mutations were identified from NGS.