It’s important to know that the symptoms and signs of MF can change over time. If MF is changing your life, it’s time to speak to your doctor.
What is MF
MF Symptoms
MF Treatment
Life with MF
Myelofibrosis or MF as it is commonly known, is a rare blood cancer affecting your bone marrow. The marrow is a soft, fatty tissue inside your bones which is responsible for producing blood cells. In MF, this healthy tissue is gradually replaced by fibrous scar tissue. Due to the scarring, the marrow is not able to make enough blood cells.
Who gets MF?
This guide can help you and your loved ones understand what causes MF, how it affects the body, and what symptoms you might experience.
MF develops slowly and in the early stages of the condition, you may not experience any signs or symptoms at all. In fact, people are often diagnosed with MF after having blood tests for an unrelated condition.
Almost everyone diagnosed with MF has an enlarged spleen. When your bone marrow cannot make enough blood cells, the spleen takes over and begins to make blood cells. This may cause your spleen to get bigger, and as it does, your symptoms may become worse.
Common symptoms of MF include:
Don’t wait for things to get worse before you speak to your doctor.
Treatment goals for MF can vary depending on your unique circumstances. They may include:
Your doctor can help you understand what their goals are for you.
What are the treatment options for MF?
Active surveillance:
If you have no symptoms when you are diagnosed, your doctor may put you under active surveillance. Your condition is monitored closely but not treated unless there is a change in your test results or you develop symptoms.
Medications:
Depending on the severity of your condition, your doctor may treat you with chemotherapy or targeted agents. Antibiotics may also be prescribed to prevent or treat any infections.
Radiation or splenectomy:
Small doses of radiation may be used to reduce the size of your spleen. In some cases, your doctor may recommend removing your spleen (a splenectomy), especially when the spleen has enlarged so much that it is causing severe symptoms.
Bone marrow or stem cell transplant:
If a suitable donor can be found, some younger patients might receive a bone marrow transplant. This is a medical procedure that offers the only chance of cure for patients with myelofibrosis but it also carries considerable risk. Many factors such as your age, general health, other co-existing medical conditions and potential stem cell source play an important role in determining if this is an option for you.
Help your doctor stay on top of your symptoms, and find the right treatment for you.
From working with your doctor to manage symptoms, to giving your lifestyle a healthy upgrade, there’s a lot you can do to live well with myelofibrosis (MF).
Eat right
A balanced diet is important for people living with MF. Eating right will help you:
- Reduce your chances of heart disease. Too much salt can lead to high blood pressure, while too much saturated fat is linked to high cholesterol. Both of these problems can further raise your chance of having a heart attack or stroke.
- Keep to a healthy weight. Being overweight can raise your risk of a heart attack or stroke, but some people with MF find it hard to eat enough. You may have lost your appetite or feel too tired to prepare a healthy meal. Some people with MF feel nauseous (like you are going to vomit), because an enlarged spleen can make you feel uncomfortably full.
So what can you do?
- Eat smaller, more frequent meals if you are struggling to keep food down and maintain a healthy weight. Snacks such as fruit smoothies, yoghurt and rice puddings can be easier to digest than a large meal.
- Eat at least five daily servings of fruit and veg. Try to eat some veg with every meal, and a couple of pieces of fruit as snacks throughout the day.
- Try to cook meals from scratch. Pre-made meals that you buy in the supermarket tend to be high in fat and salt. Make meals with lean cuts of meat and flavour your dishes with garlic and herbs so you don’t miss the salt.
- Plan ahead. Meal prep (cooking dishes in bulk that you can freeze and reheat later) can help you make healthy food choices when you’re too tired to cook.
Stay active
Doing some exercise every day is very important for people living with MF. Even 10 or 15 minutes of movement can be beneficial for your physical and mental health. Exercise can help:
- Reduce your risk of heart disease
- Boost your energy levels
- Manage stress
- Maintain a healthy weight, which may prevent you from developing other health problems.
So what can you do?
The amount and type of exercise you do will depend on your symptoms. Always speak to your doctor before you start a new exercise program to check it’s safe for you. Stop if you feel dizzy or breathless, or if your heart’s racing. Your doctor may be able to help you make a plan to get active, but these are some simple ideas to get you started:
- Turn your daily activities into exercise. Walk to the shops. Park a bit further away from the door. Take the stairs if you feel up to it. It all adds up!
- Exercise with a friend. Making plans to exercise together can give you something to look forward to and make exercise more enjoyable. You could take a walk in the park before grabbing a cup of tea together. Or take up golf or pilates together - whatever you would most enjoy.
Look after your mental health
It’s natural to feel worried from time to time when you have a long-term condition such as MF. According to health psychology specialist Clare Moloney, “It’s important to address your worries, as they can affect your mood and enjoyment of life. Feeling down may mean you don’t feel as motivated to look after your health. Often, sharing our concerns and taking practical steps to deal with them can relieve you of a lot of your worry.”
Clare’s tips
- Be realistic about what you can get done. You might be tempted to try to carry on as normal, but some days symptoms such as fatigue will make this hard, and overloading yourself can lead to stress. Each day, make a list of everything you would like to get done and number each task by how important it is. That way you can get through the most important tasks on the list first, and
the rest can wait until tomorrow if necessary. - Ask for help. Chances are the people in your life would be glad to know how they can help you. For example, maybe the grandkids could water the garden, or your neighbour could pick up some groceries for you when they are next at the shops. These small things can help take some pressure off you.
- Make time to have fun! It can be hard to juggle work, family time, jobs around the house and medical appointments when you’re living with a long-term condition such as MF. It might seem
like there’s no time for fun, but if you can do one enjoyable thing each day, it can make all the difference to your mood. A little goes a long way! Making time for fun could be as simple as watching an episode of your favourite comedy, having a meal with a friend, listening to music you love, or scrolling through social media.
Where can you find more support?
It’s always good to chat to other people with MF who might be experiencing similar symptoms and feelings to you.
The Leukaemia Foundation is dedicated to ensuring every Australian with blood cancer gets access to trusted information, best-practice treatment and essential supportive care to improve their quality of
life. To learn more about the many services they provide, including emotional and practical support, call 1800 620 420 or visit leukaemia.org.au.