It looks like you are using an older version of Internet Explorer which is not supported. We advise that you update your browser to the latest version of Microsoft Edge, or consider using other browsers such as Chrome, Firefox or Safari.

Welcome to the Living with MF website

Being diagnosed with myelofibrosis or MF can be a shock, particularly when you may never have heard of it. That’s why we have created this website, to help answer questions you may have about your condition. This includes how MF affects the body, what causes it, who gets it, what symptoms to expect and treatment options. For more information, talk to your Haematologist.

What is MF?

Myelofibrosis or MF is a disorder of the bone marrow. It happens when the marrow – the soft, fatty tissue inside your bones that produces blood cells – is replaced by fibrous (or scar) tissue. Scarring of the bone marrow means the marrow is not able to make enough blood cells, which leads to a set of symptoms that can have a significant impact on your qualify of life.

jakavi-healthy-bone

Healthy bone marrow produces
most of the blood cells the body
needs

jakavi-causes-bone

MF causes scarring to the bone
marrow, preventing it from
producing enough blood cells

 

How common is MF?

MF is considered to be a rare disease.
Generally, this means that it affects about

 

jakavi-how-common-mf-left-400px

MF affects men and women in relatively equal numbers.

 

jakavi-how-common-mf-right-400px

That might explain why you probably haven’t heard of it, or met anyone with the condition before. MF is virtually unheard of in children and is very rare in young adults. It is most commonly diagnosed in patients between 60 and 70 years of age.

 

What causes MF?

As time goes on, we are learning more about MF and its causes. While the causes of MF are not fully understood, we do know that the disease causes an abnormal signal in the cells that make the red blood cells and platelets in your blood.

Recent research found that about 50% of MF patients have a change (known as a mutation) in a gene that regulates blood cell production.

PERSO-WHAT-CAUSES-MF

Generally, people are not born with these mutations but acquire them during their lives. These mutations may also be triggered by past exposure to ionising radiation or to some chemical substances such as benzene and toluene. It is also important to note that MF is rarely inherited. It is not passed on from parents to child, although some families do seem to develop the disease more readily than others.
MF is the gradual replacement of bone marrow by fibrosis. Bone marrow fibrosis is caused by mutations that genetically alter stem cells.

What are the treatment goals for MF?

Treatment goals can vary but may include:

jakavi-health
  • Improve quality of life

  • Relieve symptoms

  • Reduce the risk of complication

  • Reduce spleen size

  • Prolong survival

What are the treatment options for MF?

Active surveillance
If you have no symptoms when you are diagnosed, your haematologist may put you under active surveillance. This is a plan where your condition is watched closely but not treated unless there are changes in your test results or if you develop symptoms that show that your condition is getting worse. During active surveillance, certain exams and tests are done on a regular schedule.

Drug treatment
Your haematologist will discuss your options. Some patients are treated with chemotherapy or targeted agents.

Radiation or splenectomy
Radiation or splenectomy may be considered in severe cases.
Splenectomy is an operation to remove the spleen. 

Bone marrow or stem cell transplant
The decision to transplant is difficult and your age, disease state, general health, and potential stem cell source, all have to be very closely assessed in order to evaluate if this is a viable option.

Learning more about your treatment
If you would like to learn more about your treatment options, it’s a good idea to talk with your doctor. The following is a list of questions to help get you started.

 

Questions to ask your doctor about your treatment

  • What are my treatment options?

  • What treatment do you recommend and why?

  • What is the aim of the treatment?

  • How long does the treatment last?

  • How will you know if the treatment is working?

  • What are the risks and side effects of my treatment?

    • How can the risks be reduced?

    • How can any side effects be managed?

  • Will I still be able to do my normal activities?

  • Who do I contact if I have questions?

You can download and print this list of questions here.

 

 

Resources

What is myelofibrosis video?
Click here to watch a short video about myelofibrosis  

 

 

 

MF and ME Guide

Click here to download a guide to help you understand what causes MF, how it affects the body, what symptoms to expect and treatment options. We have also included a specially designed Myeloproliferative Neoplasms (MPN) symptom tracker - the MPN-10.