Read about what panmyelosis is, how it is diagnosed and how to treat it.
Panmyelosis is usually referred to as acute panmyelosis with myelofibrosis (APMF) or acute myelofibrosis.
Myelofibrosis means there's scar tissue inside the bone marrow instead of normal tissue. This causes panmyelosis, which means that the bone marrow can't produce enough red blood cells, white blood cells or platelets.
APMF is a very rare form of acute myeloid leukaemia (AML). It accounts for less than 2 out of 100 cases (2%) of acute myeloid leukaemia. It's a disease that is difficult to diagnose and often develops very quickly.
Blood cells and leukaemia
To understand how and why leukaemia affects you as it does, it helps to know how you make blood cells.
Your body makes blood cells in the bone marrow. The bone marrow is the soft inner part of your bones. You make blood cells in a controlled way, as your body needs them.
All blood cells start as the same type of cell, called a stem cell. This stem cell then develops into:
- myeloid stem cells, which become white blood cells called monocytes and granulocytes (neutrophils)
- lymphoid stem cells, which become white blood cells called lymphocytes
- erythroblasts, which become red blood cells
- megakaryocytes, which become platelets
This diagram helps explain this
In acute myeloid leukaemia, the bone marrow makes too many monocytes or granulocytes. These cells are not fully developed and are not able to work normally.
In other types of leukaemia, usually only one type of myeloid cell becomes cancerous. But in APMF more than one type of myeloid cell is abnormal. Usually, cells called megakaryocytes are also abnormal in APMF.
Megakaryocytes are the cells that go on to become platelets. So it is sometimes confused with a type of leukaemia called acute megakaryoblastic leukaemia.
Often in APMF, the levels of all the blood cells are low. This is called pancytopenia. This can cause:
You are usually referred quickly to a specialist in blood disorders (a haematologist), if you have these symptoms. The specialist will do a bone marrow test. This sample is looked at under a microscope to see if there are any leukaemic cells there.
As APMF is rare, there is very little published information about this disease and its treatment. But most doctors are likely to treat it in a similar way to other types of AML.
Sadly, APMF is a quickly developing illness and people with it can often become ill very quickly. Chemotherapy may not always work and can have severe side effects. Some of these side effects can be life threatening in themselves. For example, the treatment can temporarily reduce someone’s ability to fight infection even more than the leukaemia does. So it is possible that patients can die from infections during or soon after their treatment.
Coping with a diagnosis of a rare cancer can be especially difficult, both practically and emotionally. Being well informed about your cancer and its treatment can make it easier to make decisions and cope with what happens.
Talking to other people
Talking to other people who have the same thing can also help.
Our discussion forum Cancer Chat is a place for anyone affected by cancer. You can share experiences, stories and information with other people who know what you are going through.
The Rare Cancer Alliance offer support and information to people affected by rare cancers.