Dear Sue: Here's some information I found for you. If you need more there are
other sites (lots) like this one. All you need to do is take your browser and
type in myelofibrosis and it will bring up a page full of sites for you to
explore. If I may be of further help to you, just ask. We are here to serve
and there are so many wonderful individuals to help you through this journey.
Sincerely, Lillian
Myelofibrosis (also called agnogenic myeloid metaplasia) is a myeloproliferative
disorder in which the bone marrow is initially over-active, but then
develops scar
tissue (fibrosis). The normal bone marrow has a very fine network
of fibres supporting the blood forming tissues. In myelofibrosis this
network is
coarsened and thickened so that normal blood cell production is
blocked. As a
result normal blood production switches to the liver and spleen which
become
enlarged. Producing blood cells in the liver and the spleen is not
efficient and so
patients ffrequently develop anaemia.
Causes
Myelofibrosis is thought to result from abnormal bone marrow stem
cells. The
abnormal cells produce growth factors which stimulate scar tissue in
the bone
marrow. In some patients myelofibrosis follows on from polycythaemia
vera or
essential thrombocythaemia. There are Leukaemia Research Fund leaflets
available on these two conditions. However in other patients there is
no evidence
of prior polycythaemia vera or essential thrombocythaemia, and in
these patients
the term primary myelofibrosis is used. The cause of primary
myelofibrosis is
unknown.
Signs and Symptoms
Some patients have no symptoms and myelofibrosis may be discovered as
a
chance finding after a routine blood test. More usually patients feel
tired or
breathless because of anaemia, or notice some abdominal discomfort
resulting
from the presence of a large spleen.
Diagnosis
Myelofibrosis is usually suspected following the results of a simple
blood test
which measures the number of the various blood cells. Abnormally
shaped red
cells are characteristic.
Confirmation of the diagnosis requires a number of subsequent
investigations, and
analysis of a bone marrow sample to detect the scar tissue. This
involves
obtaining a small amount of marrow from inside the bone with a needle,
and a
sample from the bone itself showing the structure of the bone marrow
cavity. The
first is known as a bone marrow aspirate, the second as a bone marrow
trephine.
The trephine will show the fibrosis which is characteristic of the
disease. The
samples are usually obtained from the back of the hip bone, although
the sternum
(breast bone)
may be used instead for bone marrow aspirates (but not for trephines).
The
procedure causes some discomfort but does not take very long. The
procedure is
usually carried out with sedation as well as local anaesthetic.
Treatment
The appropriate choice of treatment for an individual patient with
myelofibrosis
will depend on the details of each case. Patients who do not have
severe anaemia
and have no symptoms are usually seen regularly in the out-patient
clinic but may
not need treatment.
Patients who have severe anaemia will require regular blood
transfusions, usually
every one to three months. These can usually be carried out during the
day
without the patient having to stay in hospital overnight. In some
patients an
enlarged spleen may cause problems by becoming painful or by consuming
normal blood cells and thus making the anaemia worse. In such cases
the large
spleen may respond to drugs (e.g. hydroxyurea). Alternatively an
operation to
remove the spleen (splenectomy) can be helpful. There is a factsheet
on
Splenectomy and Infection available from the Leukaemia Research Fund.
The course of myelofibrosis is very variable. Some patients have a
mild disease
which does not progress rapidly. In such cases the condition is
relatively benign
and need not interfere significantly with the patient’s activity and
working life. In
other cases the disease progresses more quickly and patients become
dependent
on blood transfusions. Finally a small proportion of patients with
myelofibrosis
may develop acute myeloid leukaemia. There is a Leukaemia Research
Fund
booklet available on Acute Myeloid Leukaemia.
The usual management of myelofibrosis is to endeavour to keep the
patient
comfortable and well without upsetting them with the side-effects of
the
treatment. In such a chronic condition with such a variable outcome,
predictions
of how an individual case will develop and what line of treatment
should be
followed must be determined individually between the patient and their
doctor(s).
Occasionally the disease changes into acute myeloid leukaemia which
then
tends to have a poor outlook.
SuFaw@aol.com wrote:
> Hi
> I have M.F. and would like to find as much info on this subject as poss.
> Can you help?
> Thanks.
> Sue.
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