Myelofibrosis (MF)

Some people are diagnosed with MF when they have a blood test for another reason. But most people are diagnosed after going to see their GP with 1 or more symptoms. These may include:

• feeling very tired (fatigue)
• feeling breathless
• high temperature (fevers) and drenching night sweats requiring a change of clothes or bed covers
• unexplained weight loss
• itchy skin (often after a warm bath or shower)
• achy or tender bones and joints
• discomfort in the tummy area (abdomen)
• feeling full soon after beginning to eat
• abnormal bleeding or bruising
• getting infections.

Some people also develop symptoms because of the complications of MF.

Gout

When the body tries to break down (get rid of) more blood cells than usual, it can cause a painful condition called gout. Gout affects the joints. It causes pain, heat, redness and swelling. It usually only affects the big toe joint. But it can affect other joints, especially in the hands and feet.

Gout is caused by uric acid building up in the blood. Uric acid is produced when lots of cells are broken down. The uric acid forms crystals that get into the joint and cause the symptoms.

Usually, the kidneys can clear uric acid from the blood and pass it out of the body in the pee (urine). But sometimes, they cannot cope with large amounts.

Your doctor can check the level of uric acid with a blood test. Depending on the result, they may give you a tablet called allopurinol to help prevent gout.

Enlarged spleen

The spleen sits on the left side of the tummy (abdomen), just under the ribs. It is usually about the size of a fist.

The spleen:

• helps fight infection
• stores and breaks down blood cells.

MF can cause the spleen to grow bigger than normal. This is called an enlarged spleen. Sometimes, this causes symptoms. These include discomfort on the left side of the tummy and feeling full quickly when eating.

Having an enlarged spleen can cause problems. It may:

• keep blood cells in the spleen instead of releasing them into the blood
• destroy blood cells.

Both these changes can reduce the number of blood cells in the blood.

Blood clots

Some people with MF have a higher risk of developing a blood clot. Symptoms of a blood clot include:

• throbbing pain, redness or swelling in a leg or an arm
• suddenly feeling breathless or coughing
• sharp chest pain, which may be worse when you cough or take a deep breath.

If you have any of these symptoms, contact the hospital straight away. If you cannot speak to your doctor, call the NHS urgent advice number on 111.

A blood clot is serious, but it can be treated with drugs that thin the blood (anti-coagulants). Your doctor or nurse can give you more information. You may be given drugs to help prevent a clot.

Blood clots can also cause heart attacks and strokes. If you think you may be having a heart attack or stroke, call 999 for an ambulance or go straight to A&E (emergency department).

Bleeding or bruising

Sometimes, MF can cause abnormal bleeding or bruising. Any bleeding might be heavier than normal and take longer to stop.

Symptoms may include:

• nosebleeds
• bleeding gums
• heavy periods
• blood in your pee or stools (poo)
• very dark poo
• blood in your vomit (sick) – this can be a bright red liquid or look like brown or black coffee granules
• tiny red or purple spots on your skin that may look like a rash.

Tell your doctor if you notice any signs of abnormal bleeding or bruising.

If you think you see blood in your sick or poo, or if you have dark poo, or if any bleeding is heavy or will not stop, contact a doctor urgently. If you cannot speak to a doctor, call 999 for an ambulance or go straight to A&E.

Acute myeloid leukaemia (AML)

Some people with MF develop acute myeloid leukaemia (AML). AML is a blood cancer, which can get worse quickly if it is not treated. It can cause similar symptoms to MF. But the symptoms of acute leukaemia develop more quickly and can be more severe.

Not everyone with MF has the same risk of developing AML. Your doctor can tell you more about this.

MF is divided into different risk groups. These can describe:

• how quickly or slowly MF may develop
• the risk of it developing into leukaemia.

Your MF risk group is based on several things, including:

• your age
• your symptoms
• whether you have anaemia (low levels of red blood cells)
• the number of white blood cells in your blood
• the number of immature (blast) cells in your blood
• the results of genetic tests.

MF can be graded as low, medium (intermediate) or high risk. Knowing your risk group can help you and your doctor choose the best treatment options for you.

Treatment can be given to control MF, including targeted therapy, immunotherapy, chemotherapy and a donor stem cell transplant (allogeneic transplant).

Targeted therapies are drugs that block the growth of cancer cells. They do this by affecting how cancer cells grow and divide.

Immunotherapy drugs use the immune system to find and attack cancer cells.

Different types of targeted therapy and immunotherapy are used to treat MF.

Chemotherapy  uses anti-cancer (cytotoxic) drugs to destroy cancer cells. It can help reduce the size of the spleen and the liver. It also helps control other symptoms and may increase the number of blood cells. But chemotherapy is not suitable for everyone with MF because it can cause low blood cell counts.

If you have chemotherapy, your doctor monitors you closely and you have blood tests to check your blood cell counts. Sometimes, treatment needs to be stopped if blood cell counts become too low.

Hydroxycarbamide (HC) is a chemotherapy drug often used to treat MF.

Taking HC for a long time can increase the risk of getting skin cancer. It is important that you protect your skin from the sun. You should also check for any changes in your skin during and after treatment with HC. Your haematologist or clinical nurse specialist can tell you more about this.

Another chemotherapy drug called busulfan may sometimes be used. You take it as a tablet. The side effects are like the side effects of HC. Taking busulfan for a long time may slightly increase the risk of developing leukaemia.

Your haematologist and clinical nurse specialist can talk to you about the side effects of chemotherapy.

A small number of people with higher-risk MF may be able to have a donor stem cell transplant. This treatment replaces bone marrow that is no longer working properly with healthy stem cells from another person (donor). These new stem cells make healthy red and white blood cells and platelets.

This treatment can sometimes cure MF. But it can also cause serious side effects, so it is not suitable for most people. Your general health needs to be good. Your haematologist will talk to you about the risks and benefits of donor stem cell treatment if this is a possibility for you.

If you are planning to get pregnant or to make someone pregnant in the next few months, talk to your doctor first.

Chemotherapy and some other treatments may affect the development of an unborn baby. Doctors usually advise against getting pregnant or making someone pregnant during these treatments and for a few months after. It is important to use effective contraception.

Chemotherapy may affect fertility. If this is a concern for you, talk to your doctor before starting treatment.

If you are planning to get pregnant, MF can increase the risks of complications during pregnancy. But with risk-reducing treatments and careful monitoring during pregnancy, most babies are born healthy. Your haematologist and obstetrician (doctor who specialises in pregnancy) will work together to give you the best care during your pregnancy.

During pregnancy, your doctor usually advises you to take aspirin daily. This reduces the risk of complications from blood clots for both you and the baby. If you need other treatment to reduce your risk of complications, your doctor may advise having interferon alpha.

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