Prognosis for myelofibrosis (MF)

There’s a range of treatment options for myelofibrosis (MF) and more are being researched and tested. Most treatments don’t aim to cure the MF. They aim to reduce the symptoms, lower the risk of complications like blood clots or bleeding, and stop the MF progressing.

A few people will have a stem cell transplant, which does aim to cure the MF. This is usually only appropriate for younger, fitter people as it’s an intensive treatment and carries too many risks for older people and people with other health conditions.

There is a chance that myelofibrosis (MF) can progress to a fast-growing type of blood cancer called acute myeloid leukaemia (AML). This happens to about one or two people in every ten (10-20%) with MF. Sometimes, this is called blast phase MF, but this is basically the same as AML and is treated in the same way. We have information about AML and its treatment if you would like to know more.

If you are concerned about your risk of getting AML, talk to your hospital team because they know your personal circumstances and may be able to reassure you. They will monitor you regularly and if they see any signs of progression, they will talk to you about the treatment you need.

It’s understandable to be worried when you get an MF diagnosis and if you would like counselling or psychological support, your hospital team or GP can refer you. In England you can refer yourself for NHS talking therapies.

Our Support Service and online community forum are also good places to find emotional support and understanding.

Your prognosis (what may happen in the future) is personal to you. It will depend on lots of things:

• your blood counts
• your symptoms
• your age
• your overall health, including other conditions you may have
• the genetic mutation that’s causing the MF.

Based on these things, your doctor may calculate a risk score. There are a few different systems in use but generally they come up with a risk score of low, intermediate-1, intermediate-2 or high. This gives doctors an idea of your prognosis and helps them decide what treatment you need. If your risk score is low or intermediate-1, you may not need treatment at all.

Prefibrotic myelofibrosis (MF) usually has a lower risk score than overt MF, but your doctor will take everything into account and recommend care based on your individual needs.

Your doctor may tell you your risk score. They may also tell you the average survival time for someone with that risk score, or you might google it yourself. Some people with myelofibrosis actively want this information, others find it very unhelpful.

It’s important to understand that statistics about survival are very general – they don’t reflect your personal prognosis. Also, your prognosis can change over time because it is affected by things like starting treatment or changing to a different treatment.

If you are worried about anything your doctor or nurse says, make sure you ask you them to explain what they mean as simply as possible. The same goes for anything you read online. You can also call our Support Service to talk things through.