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Like to know more. Just told I have Triple Negative MPN.
Can anyone tell me what this actually means? I have not seen anyone with this as yet. I have had ET for over 17 years now. I was just informed that it is tripple negative after the Bone Marrow test. Is there any documentation that I can read relating to this? Just had results of recent blood test. Platelets not going down, now on Hydrae 1 tablet a day with a second tablet every odd day, hopefully, resulting in platelets going down. Next test 4 weeks.
Were 1155 2/01, 789 15/01, 793 29/01, 826 17/02.
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Hi Lynne,
I am also triple negative ET. You’re the first person that I’ve “met” on this forum who is TN ET. It is rare and thus not well-researched or understood. I’m so delighted to hear from you and about you, and to find you!😀♥️ I’ve had the diagnosis since my BMB in December, 2023.
I’m just seeing this thread. I will read your messages and see what others have said and I’ll add information that I’ve found. I actually attended a webinar about ET today, sponsored by the Leukemia and Lymphoma Society of Canada (I’m Canadian). The only thing that the expert said about TN was that it is still overactivity of the JAK2 pathway, but the cause has not yet been identified.
Thinking of you! I’ll jump back on this thread with links to any that might be helpful.
Take care!❤️
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5 ReactionsHi @reneemichelle
So glad to meet you too. I am an Australian and live in Tasmania. How special are we. Just wish for more information. Sharing info is a good thing, especially when not much is known about what we have. Chin up, I have had it for roughly 17 years, just didn't know the exact name was. You have to ask the questions of your specialist, I have only recently found out I am ET TN. Cheers Lynne 🙃 ❤️
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