Hi all, I've just received a diagnosis of ET. I'm 34 and routine blood tests during fertility treatment showed high platelet counts, once of 775 and once of 800. I'm CALR positive, but negative for the others. All other counts normal, WBC, RBC etc. It was recommended that we just take a wait and see approach and I am scheduled for another CBC and follow up in about a month.
I've done some research and I keep seeing references to bone marrow tests. Should that be happening to rule out anything more serious?
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Purple478273
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The updated WHO criteria 2016 now recommend a BMB as a ‘major criteria’ for a diagnosis of ET. This is to differentiate ET from early PMF.
Having said that, I was diagnosed with ET Jak2+ in 2016 without a BMB. I guess the WHO criteria is just a guideline and haematologists can choose to ignore it.
Mary x
Dear Purple
I am so sorry to hear that you have received this MPN news during such an exciting time in your life. In have travelled much of the world multiple times and was on 100mg asprin and a wait and see for 11 years before platelets reached 1000000. They sat at 500 to 600 range for all those years. I found when I drank more water my counts were lower. I thought this book may help. I reach for it often. Enjoy your new baby and educate those around you and on face book. The more people understand about MPNs the more understanding, help and research will be done. nccn.org/patients/guideline...
Hi. I meant to say in my last post to you, try and get a BMB. Not only does it confirm the diagnosis but it gives you a base line from which to track the progression (or not) of the disease. The BMB is a very useful tool and gives a much more detailed picture of your disease - which is different for everyone.
Also, you say you are undergoing fertility treatment (I wish you every success). You may want to think about finding a specialist MPN haematologist with experience of caring for pregnant MPNers.
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