Ihave been told I have ET.
I have just had my blood results back for JAK2 mutations, they were negative?
I now need a BMB, has anyone else had negative bloods but have ET?
I now keep thinking maybe there's nothing wrong with me and the Haem. Doc and Nurse specialist have made a mistake?
Probably wishful thinking!! 🤔
I had bmb and diagnosed triple negative ET
Thanks for quick reply. So were your bloods test negative?
I Don't know about this Triple negative ET?
I am assuming it means its not connected to the mutations JAK2 / CALR ect ?
To be quite truthful I have no idea I’m still learning this is told what I have last year diagnosed. I’m on 10 hydroxycabamide chemo drug a week
Thank you Cat1001954I hope all goes well for you.
Triple negative means not detecting any of Jak2, CALR, or MPL for ET. If you were checked for all these three and none found then you are triple negative. This is a version of ET. Note "not detecting". Depending on how sensitive the test you got there could still be very small amount, for example less than 0.1%.
There are also various other "non-driver" mutations that are part of NGS (nexgen sequencing). Some are worth knowing about for present or future reference. If you're getting the most complete studies you'd expect to have NGS also.
How is your PLT (platelet) blood levels?
Wow what a great explanation thank you so much. My pl is 414 last check 2weeks ago
HiMy platelets fluctuate but around the 450 mark.
Holding near 450 without meds is not bad. Look fwd to the BMB results.
ET with platelets at 450?
you must have a stickler GP. Those are normal platelets in my lab values
My blood test was negative for Jak 2 but my bmb tested positive unfortunately
Hi! My ET with MPL driver was eventually diagnosed from a BMB, after negative blood results for JAK2 and CALR. Good luck!
I’ve had ET etc for 31 years and to be honest I still am no wiser.
Wow 31 years and going strong!!! This is great to know I was diagnosed 1 year ago with ET and JAK2 mutation my platelets are ok now around 430 do to taking 500mg of hydroxyurea. Just wondering how you managed your ET for 31 years. What meds do you take and are you JAK2 positive? Has life been pretty normal for you or has it effected your quality of life. Thank you.
in addition to the BMB perhaps request the NGS. I am ET triple negative. The NGS showed that I have a mutation in another gene, which causes my high platelets. CHEK2 is my faulty gene.
Hi Presley
I was diagnosed in Feb with ET following a BMB as all other genetic mutations were showing as negative so I am guessing I am triple negative too? My BMB showed small signs of scarring but not enough to indicate Myleofibrosis yet. I started on HU in March and after some trial and error now on 16 a week which had my platelets under 400 for the first time 4 weeks ago (hopefully stays this way - next set of blood tests on 14th August).
To be honest I am still trying to get my head round what all the different mutations are and the markers that my consultants look for. So far all they tell me is what my platelet count is and whether my red or white cell count is being impacted.
Thank you so much for the replies from everyone.You have all been so helpful.
Hi, how far back can you trace your blood results. When my platelets hit 550 in 2017 I went back and found 15 or more years of results. I was at about 230 in 2003 and then they started going up by about 15 to 20K per year. The told me not to worry unless platelets went over 600. They were wrong. I saw a hematologist in 2017 was Jak2+, diagnosed as ET after a BMB, in 2021 my Hct jumped to 55 and I am now PV. No treatment until 2021 now on HU and all bloods are WNL. Just my journey so far. Best to you going forward.
It’s not clear to me why you’d be diagnosed with ET before a BMB if you are negative for all the driver mutations, especially with platelets at 450 which are just at the edge of normal.
I am in a similar spot with similar platelet levels and getting checking every few months but having had negative mutation tests several years ago and a negative bmb my Dr does not think it’s an mpn. I’m not convinced he’s correct and would kind of like the mutations rechecked but thinking maybe you are getting bad info or misunderstood. Obviously if the bmb shows something you could have triple negative ET
I agree!!! That's why I'm so confused 😕 Thank you for your reply.
I’m in a similar situation to yourself and Labbymom. My platelets were in the high 500’s for the last couple of years, my Haematologist did the Jak2, CalR and MPL tests, I’m negative for all 3. I’ve since been on iron tablets for 3 months and my platelets are down by 50 now to 513.
I have another 3 months worth to take but my Hemo said that even if they don’t go any lower she will not be doing a BMB now unless they ever go over 650. She says my trend of platelet count is lower now after two years when I first got referred to her which doesn’t follow the trend of ET which she says would continue to get higher?
I’m not sure what to think as I’ve seen people on here with lower counts than mine in the 400’s with ET….triple negative but confirmed by a BMB. I’ll continue to take my iron tablets for another few months and then review everything with her again….. I wish you all the best.
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