A diagnosis of myelofibrosis can be alarming, especially since many people don’t have any symptoms at first. Here’s how you can prepare for potential changes in your life.
Whether or not you have symptoms, myelofibrosis is a serious disease that scars the bone marrow, preventing it from being able to make healthy blood cells.
Myelofibrosis is a rare form of blood cancer that’s part of a group of disorders known as myeloproliferative neoplasms (MPN). It typically affects older people and is often diagnosed following a routine checkup.
Researchers have made advances in treatment that have improved the outlook for many people with the condition. But it’s difficult to know for sure how your life will change upon diagnosis. The disease course and prognosis can vary significantly from person to person.
To understand this rare condition, here’s a look at how myelofibrosis may affect your daily life and what you can do to cope.
If you aren’t experiencing any symptoms of myelofibrosis, treatment may not be necessary right away.
However, your doctor will want to monitor your health closely and frequently for signs of disease progression. This is referred to as “watchful waiting.”
You’ll likely need to maintain a schedule of regular checkups and laboratory tests. Your doctor may check for signs of anemia, an enlarged spleen, or other complications.
Some people remain symptom-free for many years. But it’s important not to miss any scheduled doctor’s appointments during this time. It may be a good idea to keep a calendar, planner, or mobile app to keep track of your appointments.
Myelofibrosis symptoms may come on slowly. But as the condition begins to interfere with blood cell production, you may start to feel tired more often. Fatigue is caused by anemia, meaning a low red blood cell count.
Fatigue may affect your ability to work. Many people with myelofibrosis decide to reduce their work hours or take an early retirement. You can ask your boss to work from home, if possible, or take frequent breaks during the workday.
Ask for help from family or friends with household chores or hire a cleaning person.
Blood transfusions can increase your red blood cell count and help with weakness and fatigue. A blood transfusion involves receiving red blood cells from a compatible donor.
This procedure can quickly reduce symptoms of anemia, such as fatigue. A transfusion is a relatively safe procedure. Your doctor may recommend a blood transfusion for severe anemia.
People with symptomatic myelofibrosis often report having night sweats and trouble sleeping.
- going to bed and waking up at the same time every day
- avoiding caffeine near bedtime
- only spending time in bed when you’re specifically intending to sleep
- avoiding bright screens from electronics at night
- keeping your bedroom dark and cool
- playing relaxing music, meditating, or taking a relaxing bath before bed
- limiting alcohol in the evening, as it can interfere with sleep
You may need to purchase an air conditioner or fan to help keep you cool at night.
Prescription sleep aids or supplements may also help you get a good night’s rest. Talk with your doctor about taking medications for sleep.
Myelofibrosis can lead to inflammation of the tissue surrounding the bones and hardening of the bone marrow, which can be painful.
An enlarged spleen, which is common in people with myelofibrosis, can also put pressure on the abdomen and cause pain.
Myelofibrosis can also cause another condition known as gout. Gout occurs when uric acid builds up in the body and forms crystals in the joints. The joints can become swollen, painful, and inflamed.
There are many treatment options available to deal with pain, depending on the cause. For an enlarged spleen, your doctor may recommend one of the following treatment options:
- ruxolitinib (Jakafi)
- hydroxyurea (a type of chemotherapy)
- interferon alfa
- thalidomide (Thalomid)
- lenalidomide (Revlimid)
- radiation therapy
If these options don’t work, you may need to have surgery to remove your spleen. This is known as a splenectomy. However, this procedure can carry risks, such as blood clots, infection, and liver enlargement.
Over time, you may develop a low platelet count. Platelets help with clotting. If you don’t have enough platelets, you’ll bleed and bruise more easily.
You may need to take extra time and care when walking up and down stairs or wear protective gear when exercising, such as knee pads.
You may also want to rearrange the furniture in your household to avoid any risk of tripping or bumping into something that can cause injury.
A diagnosis of any chronic illness can lead to emotional stress. It’s important that you ask for support from family, friends, or a support group. You may also want to seek counseling to work through your emotions.
Scheduling a meeting with a nurse or social worker can give you a better understanding of how a cancer diagnosis may affect your life and point you in the right direction to receive help.
You can also receive support from an organization like:
Alternatively, you can schedule an appointment with a licensed mental health professional, such as a counselor or psychologist.
A few simple lifestyle changes can also help you manage stress. Activities such as meditation, yoga, gardening, gentle hiking, and music can help improve your mood and overall well-being.
All treatment options for myelofibrosis carry the risk of side effects. You should discuss this with your doctor before you start treatment.
Side effects of treatment depend on many factors, including treatment dose, your age, and if you have any other medical conditions. Side effects may include:
- temporary hair loss
- shortness of breath
- tingling sensations in your hands or feet
Keep in mind that most side effects are temporary and will go away when you complete treatment. You may need to take additional medications in order to manage these side effects.
It may be a good idea to keep a journal or use a phone app to track your side effects. Share this information with your doctor at your next appointment.
While there’s no specific diet you need to follow for managing myelofibrosis, the foods you eat may play a role in your disease progression.
Chronic inflammation is a hallmark feature of myelofibrosis. The food you eat can also have an impact on the amount of inflammation in your body.
You may need to modify your diet to ensure you’re eating a healthy, balanced diet rich in:
This may, in turn, reduce inflammation and may even help slow down the progression of myelofibrosis.
- vegetables, especially dark leafy greens and cruciferous vegetables like broccoli and kale
- whole grains
- beans and legumes
- nuts and seeds
- healthy oils, like coconut or olive oil
- fatty fish
- fat-free dairy
- lean meats
They also recommend avoiding the following:
- red meat
- foods high in salt
- foods high in sugar, including sugary drinks
- foods high in fat, like whole milk and cheese
- processed food
- white bread
- excessive amounts of alcohol
In addition to diet changes, it’s important to maintain a healthy weight. Meeting with a registered dietician can help you figure out what changes you need to make to your diet.
Though you may not have symptoms at first, a myelofibrosis diagnosis will mean that your life is likely going to change in several ways.
At first, this could mean modifying your diet, going to the doctor more often for checkups, and joining a support group.
Later on in your disease course, it could mean dealing with new symptoms like fatigue or pain, trying new medications, or having surgery. Myelofibrosis treatments aim to help control symptoms and complications, enhance your quality of life, and improve your outlook.
Your doctor can help you decide on a treatment plan, while a social worker or support group can help you manage the emotional side effects.