Hi Lynne,

I see @janemc's wise words about the lack of information. There are a couple of recent articles that provide the latest information about triple negative ET and an annual update on ET in general. They are rather technical, but there are some key messages in them. You can find them with a simple online search:

1. Brief Report "Triple-Negativity Identifies a Subgroup of Patients with Better Overall Survival in Essential Thrombocythemia", Marco Santoro and others "Hematology Reports" 2022, 14, 265-269
from its abstract:
"...clinical features and prognosis (of triple negative ET) have not been described with precision yet...Data from 266 consecutive essential thrombocythemia patients were analysed. Triple-negative patients had a significantly lower symptom load and lower frequency of splenomegaly at diagnosis. The results show that the rate of thrombosis was equal in the two subgroups [triple negative is one subgroup, other subgroup is folks with one of the 3 driver-gene mutations]. Overall survival was slightly better in the triple-negative group of patients. "

2. "Triple-Negative Essential Thrombocythemia: Clinical-Pathological and Molecular Features. A Single-Center Cohort Study", by Daniele Cattaneo and others, Frontiers in Oncology, 2021 Mar 12; 11:637116.
Very technical - looks at the bone marrow morphology and the clinical-laboratory parameters of triple-negative ET patients and the molecular profile to idetnify potential clonal biomarkers.

3. "Essential Thrombocythemia: 2024 update on diagnosis, risk stratification, and management", by Ayalew Tefferi and others, American Journal of Hematology, 2024, volume 99, Issue 4, p.697-718.
This annual update article gives an overview for all ET (JAK2, CALR and MPN as well as TN). The article cites "Mayo-Florence" studies of 2000 patients. In the concluding remarks, the authors state that those studies "were concordant in their identification of triple-negative driver mutational status as a particularly favorable risk group, in terms of both thrombosis and disease transformation [to AML or MF]...Accordingly, it is reasonable to recommend a highly conservative treatment approach in triple-negative ET that is devoid of cytoreductive drugs...The outstanding prognosis in triple-negative ET makes it difficult to subject such patients to clinical trials with drugs devoid of demonstrable disease-modifying activity."

Anyways, of course since "very few papers are presently avalable on triple-negative ET, which is basically described as an indolent [slowly progressing] disease" (stated in the abstract of the second article), one has to be cautious. It reflects the information currently available, and the statements are relatively favourable re triple-negative ET. I appreciate getting as much information as possible, to ask my O/H the questions that are important to me.

It's good to keep reading, asking questions and sharing so that we can be our own best advocates!

Take care!!👍😀❤️