Did you know that most people living with myeloproliferative neoplasms (MPNs) don’t experience symptoms when they’re first diagnosed? However, symptoms often develop and may change as the MPN progresses. Some common symptoms of MPNs are also typical side effects of MPN treatments. Your doctor can help you understand where symptoms are coming from and how best to manage them.

Common MPN Symptoms

MPNs are a group of cancerous disorders in which blood stem cells develop abnormally and excessively in the bone marrow. MPNs are closely related to other types of blood cancer such as leukemia, lymphoma, and myeloma. In fact, some leukemias are considered MPNs and some MPNs can turn into leukemias.

Because MPNs involve one or more different types of blood cells, they may cause different symptoms. Some symptoms are common in many or all types of MPNs, while others are associated only with certain types.

Here’s a quick guide to the way each type of blood cell works:

• Red blood cells (RBCs) — These cells carry oxygen to all body tissues. Oxygen is necessary for generating energy.
• White blood cells (WBCs) — WBCs belong to the immune system and protect you from bacteria, viruses, toxins, and parasites.
• Platelets — Platelets are small cell fragments that help form blood clots.

Doctors order regular blood tests — like complete blood counts (CBC) — to measure levels of each cell type.

1. Fatigue and Weakness

Anemia (a low RBC count) is a common symptom in people with primary myelofibrosis (MF), a type of MPN. This is because scar tissue develops in the bone marrow, preventing it from producing enough healthy RBCs. Other MPNs, such as polycythemia vera (PV) and essential thrombocythemia (ET), don’t cause anemia directly but might lead to secondary myelofibrosis as they progress and damage the bone marrow.

Our bodies need oxygen to make energy. Low oxygen levels from anemia in MF can lead to tiredness and weakness. You may also experience light-headedness, vertigo, or shortness of breath with physical activity. The MPN Research Foundation recommends getting regular exercise and taking naps as effective ways to increase energy levels.

2. Abnormal Bleeding and Clotting

In people with MPNs that raise or lower platelet counts to dangerous levels, abnormal bleeding or clotting can occur. If you have a low platelet count, you’re at risk for bleeding symptoms like:

• Easy bruising
• Bleeding more than usual when injured
• Nosebleeds
• Heavy periods
• Blood in your urine or stool

Bleeding symptoms may occur in MF, PV, and ET.

High RBC levels, abnormal platelets, or abnormal WBCs are risk factors for blood clots in people with MPNs. These cancerous disorders raise the risk for life-threatening complications such as:

• Deep vein thrombosis (a blood clot in a deep vein)
• Pulmonary embolism (a blood clot in the lungs)
• Heart attack
• Stroke

Doctors may prescribe aspirin for people with MPNs to lower the risk of clotting. Anticoagulants (blood thinners) are sometimes prescribed if a clot develops in a large vein. Phlebotomy (removal of a small amount of blood) is an effective treatment to prevent blood clotting in PV.

3. Enlarged Spleen

The spleen, located on the left side of the abdomen, stores extra RBCs for when the body needs them. In many cases of MF and some cases of PV, the spleen swells with extra abnormal RBCs. It may also begin producing RBCs to compensate for bone marrow damage.

When the spleen becomes too large — a condition known as splenomegaly —symptoms may include abdominal pain, a feeling of fullness, and pressure on the left side. The swollen spleen can push against the stomach, causing discomfort, loss of appetite, or a feeling of fullness after eating a small amount of food. This can lead to weight loss over time. Some people with MPNs also develop hepatomegaly (an enlarged liver), which can contribute to abdominal discomfort.

Many treatment options for MPNs can also help reduce an enlarged spleen. In severe cases of splenomegaly, splenectomy (surgical removal of the spleen) or radiation may be needed to manage symptoms.

4. Fevers and Infections

Fevers and frequent infections may be a symptom of neutropenia. This medical term refers to low levels of WBCs, which can occur in MF and other types of MPNs. These symptoms may also be a side effect of cancer treatment.

5. Skin Symptoms

Pruritus (itching) is a common symptom in many types of MPN. People with MPNs have high levels of cytokines and histamine. The immune system releases these chemicals, which are associated with inflammation.

Medications used to treat MPN can also help reduce itching. A doctor may also recommend oral antihistamines, aspirin, or prescription topical medications to help.

Tips that may help control itching include:

• Keeping your skin moisturized
• Bathing less frequently and using mild soap and water that’s not too hot
• Staying hydrated with plenty of fluids
• Keeping the air in your home cool and humid
• Choosing cotton clothing and bedding
• Reducing your stress level as much as possible

Night sweats are common symptoms in most MPNs. Studies show that night sweats are caused by inflammation. Treating your MPN with anti-inflammatory medications can help manage uncomfortable sweating.

MPNs like MF that lower your platelet count can cause tiny red or discolored spots to appear on your skin, known as petechiae. These spots occur due to bleeding in the small blood vessels just beneath the skin.

MPNs may cause reddish or purple skin discoloration. Your fingers or toes may feel cold and turn blue. Ulcers on the ankles or legs or in the mouth may be a side effect of hydroxyurea, a common MPN treatment.

6. Reduced Vision and Hearing

PV and ET are associated with vision problems like blurred vision or blind spots. PV may also cause hearing problems, such as tinnitus (ringing in the ears). Doctors believe these symptoms are associated with thicker, stickier blood called hyperviscosity, which raises the risk of clotting problems.

ET can cause silent migraines, which involve visual or sensory disturbances — like seeing flashes of light or feeling tingling — without the pain typically associated with migraine headaches. Symptoms of silent migraines can also include nausea and sensitivity to light.

7. Pain

MPNs may cause different types of pain. Abdominal pain may be due to an enlarged spleen. Bone pain may be caused by overproduction of blood cells and crowding in the bone marrow. This symptom can also affect people with MF as their condition progresses.

Headaches may be a side effect of MPN treatments or result from hyperviscosity. MF may cause joint pain or gout. ET can cause pain in the hands and feet.

8. Depression and Anxiety

People with MPNs have a higher rate of depression and anxiety than that of the general population. According to the National Institute of Mental Health, the risk for depression is higher in people with many types of chronic illness. Depression may be triggered by feelings of anxiety, stress, and worry that arise as a result of living with a chronic condition.

Treatment for depression can improve your quality of life while living with MPN and depression. Examples of treatments include medications and talk therapy. Having an active support system can make it easier to cope with these challenges.

You can find support from:

• Family members
• Friends
• Your spiritual community
• Online or in-person support groups

Talk to Your Doctor

Living with MPNs can bring a mix of symptoms, from tiredness and pain to emotional effects like stress and worry. Recognizing these signs can help you work with your health care team to find ways to manage them effectively. With the right support, treatments, and self-care steps, you can improve your day-to-day life and handle the changes MPNs may bring.

Find Your Team

On myMPNteam, the social network for people with myeloproliferative neoplasms and their caregivers, more than 4,800 members come together to ask questions, give advice, and share their experiences with others who understand life with different forms of MPNs.

What symptoms have you had with MPNs? What has helped you manage them? Share your experience in the comments below, or start a conversation by posting on your Activities page.