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Myelofibrosis explained, from the first blood test onwards | CION Cancer Clinics
Myelofibrosis is a rare, slow blood cancer in which scar tissue builds up in the bone marrow. The marrow then struggles to make healthy blood, so haemoglobin often falls and the spleen swells. It is usually found in older adults, it is not inherited, and many people live with it for years. This page explains what it does, which tests confirm it and how it is managed. At CION Cancer Clinics, every leukaemia, MDS and MPN case is reviewed by our haematologist and discussed at a tumour board before a plan is agreed.
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Medically reviewed by Dr. Basudev PokhrelConsultant Haematologist · last reviewed September 2026, next review due September 2027
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The short answer
What is myelofibrosis, in plain words?
Myelofibrosis is a rare, long-lasting blood cancer in which the bone marrow slowly fills with scar tissue. Scarred marrow cannot make enough healthy blood cells, so the counts drift out of balance and the spleen grows as it tries to take over the work.
Where it sits among blood cancers
It belongs to a family called myeloproliferative neoplasms, or MPNs. That long name means the marrow is making blood cells in an uncontrolled way. Its two relatives are polycythaemia vera, where too many red cells are made, and essential thrombocythaemia, where too many platelets are made. Either of those can turn into myelofibrosis years later.
Why it starts
A change appears in the genes of one blood-forming cell in the marrow. It is picked up during life, not passed down from a parent, so your children do not inherit it from you. The three genes most often involved are JAK2, CALR and MPL. Nothing you ate, did or failed to do caused it.
Who usually gets it
It is mostly found in older adults, and it is uncommon under middle age. Many people have no symptoms at first. The condition is often noticed because a routine blood test looks odd, or because a doctor feels a large spleen during an examination for something else.
Myelofibrosis behaves very differently from one person to the next. Some people live with it quietly for many years; others need treatment soon.In the body
What does the scarring actually do to you?
Most of what you feel comes from four things happening at once. Not everyone has all four.
Low haemoglobin
Fewer red cells means less oxygen reaches your muscles and brain. You feel tired, breathless on stairs and pale. For many people this is the symptom that matters most day to day.
A large spleen
The spleen, under the left ribs, starts making blood cells itself and swells. It can press on the stomach, so you feel full after a few mouthfuls, or cause a dragging ache on the left side.
Whole-body symptoms
The disease releases signals that act on the whole body.
Often reported
- Drenching night sweats
- Weight loss without trying
- Low fevers and itching
- Bone and muscle pain
Counts that swing
Early on, white cells or platelets may be high. Later they often fall. Low platelets mean easy bruising or bleeding; low white cells mean infections are harder to shake off.
Not sure whether this applies to you?
Ask an oncologistGetting a diagnosis
Which tests confirm myelofibrosis?
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A full blood count and blood film
A doctor looks at your blood under a microscope. Red cells shaped like teardrops, and young cells that normally stay in the marrow, are strong clues that the marrow is scarred.
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Gene tests on a blood sample
The lab looks for changes in JAK2, CALR and MPL. Finding one supports the diagnosis. Some people have none of the three, which does not rule myelofibrosis out.
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A bone marrow biopsy
A small core of bone is taken from the back of the hip under local anaesthetic. This biopsy, a sample of tissue for the lab, is the test that shows the scarring directly and grades how much there is. Often no liquid marrow can be drawn, because the scar tissue is so dense.
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An ultrasound of the abdomen
This measures the spleen and liver, and gives a starting point to compare with later.
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A risk score
Your age, counts and symptoms are combined into a score that helps your haematologist decide whether to watch closely or start treatment.
On your report
What do the words on the report mean?
- Reticulin or collagen fibrosis
- The two kinds of scar tissue seen in the marrow. The report usually gives a grade; a higher grade means more scarring.
- Dry tap
- The needle could not draw liquid marrow. It is common in myelofibrosis and is not a failed test.
- Leucoerythroblastic picture
- Young red and white cells are showing up in the blood, a sign the marrow is under strain.
- Splenomegaly
- An enlarged spleen.
- Extramedullary haematopoiesis
- Blood being made outside the marrow, usually in the spleen or liver.
- Blasts
- Very immature blood cells. A rising number is watched closely.
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What happens next
How is myelofibrosis treated?
Treatment is matched to your risk score and to what is troubling you most. The aim for most people is to control symptoms, shrink the spleen and keep blood counts at a level you can live well with.
Watching closely
If your score is low and you feel well, your haematologist may simply check your blood and spleen at regular visits. This is a real plan, not a delay. Starting medicine early does not change the course for everyone.
Medicines for the spleen and symptoms
Tablets called JAK inhibitors, such as ruxolitinib, can shrink the spleen and ease sweats, itching and tiredness. They do not remove the disease, and they can lower haemoglobin and platelets, so blood tests are frequent at the start. Low haemoglobin is managed separately, sometimes with transfusions.
Stem cell transplant
A donor stem cell transplant is the only treatment that can remove the disease for good. It carries serious risks and suits a small number of people, usually younger, fitter people with higher-risk disease. It does not suit most older people. CION's haematology team assesses whether it is worth considering and coordinates referral to a transplant centre.
Never start, stop or change a medicine on your own. Your treating team sets and adjusts every plan.Commonly believed
What do families often get wrong about myelofibrosis?
"Scarring means the bones themselves are damaged."
The scarring is in the soft marrow inside the bone, where blood is made. Your bones are not breaking down. The problem is the marrow's ability to make blood, and that is what treatment targets.
"If there are no symptoms, it cannot be serious."
Some people with few symptoms still have a higher risk score because of their counts or gene results. Keep every follow-up visit, even when you feel well. The blood test is how changes are caught early.
"Our children should be tested, because it runs in families."
The gene change is acquired during life, not inherited. Family members do not need routine testing. A family link is rare, and your haematologist will ask about it if it matters.
"The spleen is the problem, so removing it will fix things."
The spleen is working hard because the marrow cannot. Removing it is major surgery with real risks, and it does not treat the marrow. It is kept for a few carefully chosen people.
Did you know
A report that says myelofibrosis is not a prognosis on its own. Your outlook depends on your age, your counts, your symptoms and your gene results together, which is why your haematologist works out a risk score before discussing what lies ahead.
Questions we are asked
Common questions about myelofibrosis
Is myelofibrosis a cancer?
Yes. It is classed as a blood cancer, part of the myeloproliferative neoplasm family. That word can be frightening, but myelofibrosis is usually a slow, long-term condition rather than a fast one. Many people are managed with tablets and regular blood tests for years. Your own course depends on your risk score.
Can myelofibrosis turn into leukaemia?
In some people it can change into acute leukaemia, which is why your blood is checked for blasts at every visit. This does not happen to most people. A rising blast count, new fevers or falling counts are signs your haematologist looks for, and they would prompt a fresh bone marrow test.
What symptoms should make me call my team?
Call if you notice new bleeding or bruising, fevers or infections that keep coming back, sudden pain under the left ribs, or rapidly worsening tiredness or breathlessness. Severe sudden pain in the left upper abdomen, fainting or heavy bleeding needs the nearest emergency department or a call to 108.
Do I need a bone marrow biopsy?
Almost always, yes. Blood tests and gene results point towards myelofibrosis, but the biopsy is what shows the scarring and separates it from its relatives. It is done under local anaesthetic and takes a short time. You go home the same day in most cases.
Can diet or exercise reverse the scarring?
No food, supplement or exercise plan removes the scar tissue. Eating well does matter, because weight loss and an early full feeling are common. Small, frequent meals and staying active within your energy help you cope better with treatment. Tell your team before taking any herbal product.
Is this the same as primary myelofibrosis?
Primary myelofibrosis starts on its own. Secondary myelofibrosis develops from earlier polycythaemia vera or essential thrombocythaemia. They look and are treated much the same, though the risk score used can differ. Your report should say which one you have.
Will I need blood transfusions?
Some people do, when haemoglobin falls low enough to cause symptoms. Others never need one. There are also medicines that can lift haemoglobin in selected people. Your haematologist decides based on how you feel and your repeat counts, not on one result.
Is treatment covered by Aarogyasri or insurance?
Parts of it often are. Aarogyasri, PM-JAY, CGHS, ECHS, EHS and many cashless insurers cover blood cancer care, but what each covers for tablets taken at home varies. Scheme rules change, so check your current entitlement. Our team can help you find out before you travel.
Your Haematologist
Meet CION's haematologist. One specialist for your blood report and your plan.
Dr. Basudev Pokhrel reviews blood counts, transfusion needs and blood disorders, and works with the CION tumour board on blood cancers.
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Sources
- Leukemia & Lymphoma Society — Myelofibrosis
- National Cancer Institute — Chronic Myeloproliferative Neoplasms Treatment (PDQ) - Patient Version
- American Society of Hematology — Blood cancers
- Blood Cancer UK — Understanding blood cancer
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
Primary vs Secondary MyelofibrosisWhether yours started on its own or from another MPNDIPSS Risk Scoring in MyelofibrosisHow your risk score is worked outRuxolitinib in Myelofibrosis: What It Does and Does Not DoThe most commonly used tablet, explainedSymptoms of Myelofibrosis and the Symptom ScoreTracking how you feel between visitsBlood cancer guideWhere myelofibrosis fits among blood cancers
Talk to us
Have a report that mentions myelofibrosis?
Send us your blood count, marrow and gene reports. Our haematology team will explain what they show and what to ask next. One helpline serves every CION centre.