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Living and Managing Tips When You Have Myelofibrosis

Living and Managing Tips When You Have Myelofibrosis

Tips For Managing and Living with Myelofibrosis 

Although it is a rare disease, myelofibrosis is a severe blood cancer that prevents blood from healthily circulating in the body. It is usually seen in patients over 50 years of age. Since it has no apparent symptoms, it is mainly diagnosed after a routine examination. The prognosis of the disease can be observed differently in everyone. As with all chronic diseases, myelofibrosis will significantly alter some patients’ living conditions.

After the disease is diagnosed, the following problems may arise: 

  • Frequent doctor appointments 
  • Emotional stress and irritability 
  • Tiredness 
  • Weakness 
  • Feeling lonely 
  • Increasing pain 
  • Sleep problems 
  • Nutritional disorders 

In addition, if the disease is in the stage requiring treatment, side effects that come with treatment may also occur. 

Small changes we will make in our daily lives will increase our standard of living and keep us away from the disease’s problems. 

The following question may immediately come to your mind:  

Is myelofibrosis a terminal disease? 

Myelofibrosis is a rare type of bone marrow cancer in which the average production of blood cells is impaired. Some patients have no symptoms, even if myelofibrosis is diagnosed. In such cases, no treatment is applied; only the process can be followed for routine controls.  

To learn more about Myelofibrosis, read our ultimate guide: Myelofibrosis Ultimate Guide

In advanced stage myelofibrosis patients, treatment methods such as antibiotic treatments, biotherapy, radiotherapy, chemotherapy, stem cell transplantation can be applied according to the stages of the disease. Myelofibrosis treatments aim to help control symptoms and complications improve the patient quality of life. 

Whether we accept it or not, learning to live with myelofibrosis instead of fighting it, as in all chronic diseases, is one of the most critical steps that can be taken for treatment. In addition, the following tips will help you learn to live with myelofibrosis and improve your quality of life. 

Eat Healthy 

Although the foods we consume do not have a primary effect on myelofibrosis, the dietary choices  can be an essential factor in the progression of the disease. The contents of the foods we consume can affect the inflammation in our bodies. A healthy and balanced diet provides the nutrients the body needs, gives energy, and helps weight control. 

An ideal diet may include: 

  • Fruits 
  • Vegetables (Especially dark leafy greens and cruciferous vegetables like broccoli and kale) 
  • Whole grains 
  • Healthy oils (Olive oil, coconut, avocado, hazelnut, etc.) 
  • Proteins (Chicken, turkey, eggs, beans, low-fat milk, soy, etc.) 
  • Legumes 
  • Seeds 

What not to consume: 

  • Red meat 
  • Processed food 
  • Salt 
  • Foods high in sugar, including sugary drinks 
  • Foods high in fat, such as whole milk and cheese 
  • White bread 
  • An excessive amount of alcohol 
  • Saturated oil and trans oils 

Benefits of Exercise and Sports 

Moving and exercising helps you cope with the stress of the disease. It increases your motivation, raises your energy, increases the body’s resistance. It strengthens your muscles and immune system. 

You can improve your quality of life and turn sports into a lifestyle with regular weekly or daily exercises like walking, swimming, yoga, cycling, and basic outdoor activities like trekking and jogging. If you have difficulty moving, you can practice with a physiotherapist or personal trainer. 

Spending time in nature such as the sea, lakeside or forest areas is also good for your health. 

Having Good Sleep 

Whether you have a disease or not, good sleep is one of the essential elements of a healthy and quality life. People with symptomatic myelofibrosis may have trouble sleeping, often due to nighttime symptoms such as night sweats and fever. Therefore, regular rest can help with the fatigue that may occur in myelofibrosis. Creating a sleep routine will eliminate these problems. 

To create a sleep routine, you can follow these steps: 

  • Avoiding bright screens from electronic devices such as computers and phones at night 
  • Going to sleep and waking up at the same time every day 
  • Ensuring the bedroom is quiet, dark, and relatively cool 
  • Avoiding caffeine and alcohol close to bedtime 
  • Spending time in bed only during the hours you plan to sleep 
  • Listening to relaxing music, meditating, or taking a relaxing bath before bed 

Avoid Bad Habits 

It is a crucial step to improve the quality of life to avoid the actions that are not good for you for a healthy life and that tire your body unnecessarily. 

  • Avoid all types of tobacco products such as cigarettes, tobacco, cigars, etc. 
  • Cut down on alcohol 
  • Instead of sitting too much, take small breaks while working or in your daily routines. 
  • Stop constantly snacking 
  • Stay away from environments and people that can stress you out 
  • Don’t disrupt your sleep pattern  

Get Help from Loved Ones 

Our loved ones bind us to life. Every time we feel grumpy or lonely, they support us and offer good suggestions. Chronic diseases such as myelofibrosis can cause emotional stress and make patients feel lonely. Asking for support from family, friends, or a support group will guide you in the right direction. Through solid communication with your loved ones, you can better understand the disease and fight together. The support of your loved ones will give you strength. 

Keep in Touch with Your Doctor 

After meeting the disease, you may enter a period where you will spend more time with your doctor and your medical team. With good communication with your doctor, you can monitor your condition more closely, have better understanding of your disease’s progress and determine the most appropriate treatment. You can manage the process together. Remember that your doctor will be one of your closest friends during this process. 


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