Jada Bascom Foundation
All conditions

Myeloproliferative neoplasms

Post-essential thrombocythemia myelofibrosis

Also called: post-ET MF · PET-MF · post-ET myelofibrosis · secondary myelofibrosis after ET · myelofibrosis · essential thrombocythemia · ET · myeloproliferative neoplasm

Classified by the World Health Organization as Post-essential thrombocythaemia myelofibrosis.

What a donor has to do with this

For some people with this condition, a transplant using blood stem cells from an unrelated donor is part of the treatment guidelines. When a transplant is the right route and no one in the family matches, that donor comes from a registry. Not everyone with this condition has a transplant, and many never need one.

This is our reading of published transplant guidelines for this condition, not a measurement of how many people need a donor. Where a source actually counted donors, the figure and the people it counted are shown further down. Where none did, we say so rather than estimate.

What the evidence says

Who it affects
Typically diagnosed in the mid-60s without marked sex predominance: median age 66.2 and 44.9% male. Source population/region/year: 69 post-ET MF patients in a predominantly Italian multicentre ruxolitinib-treated cohort with one German centre; study published 2018.
Treatments other than a transplant
JAK inhibitors such as ruxolitinib, anemia- and symptom-directed care, splenic management and clinical trials can reduce disease burden or bridge to HCT; only allogeneic HCT is established as curative
If a transplant is used, the cells come from
Allogeneic peripheral-blood or bone-marrow grafts from matched related or unrelated donors; cord-blood use carries high graft-failure risk; dominant graft source was not reported separately for post-ET myelofibrosis
How often the donor was unrelated
Not reported. No source we could read states this for this condition, so we do not give a number. An estimate here would be a guess dressed as evidence.

Where this gets complicated

This is fibrotic progression of antecedent essential thrombocythaemia, not primary myelofibrosis; registry coding may retain the antecedent primary. Transplant studies commonly pool post-ET and post-PV disease, so no subtype-specific unrelated-donor share was inferred.

Written for transplant clinicians, not for patients. We quote it so you can see what the guidance actually says:
“Primary or post-ET/PV myelofibrosis can only be cured by allo-HCT”

It describes what teams consider in general. It cannot say what applies to any one person. Read the source.

People with this condition need donors

Joining a registry is a cheek swab and a short health form. You are contacted only if you turn out to be a possible match for someone, and you can ask questions and decline before anything else happens.

Find your registry

Related conditions

Others in myeloproliferative neoplasms. They are genuinely different diseases with different treatments — the group name is not a diagnosis.

Where this came from