Myelofibrosis

Supportive Care

Myelofibrosis can be accompanied by serious complications that arise from the disease or treatment, which can affect many aspects of your life. Managing the resulting physical, emotional, practical, spiritual, financial and family-related challenges may feel overwhelming, but help is available. A group of wide-ranging services, known as supportive care or palliative care, is designed to help you with these challenges.

A primary goal of supportive care is to prevent, minimize and effectively manage treatment-related side effects and to relieve cancer symptoms to keep you as comfortable as possible throughout treatment. Discuss potential side effects with your health care team and ask for a list of what to watch for before you begin treatment. Alert your team as soon as a side effect starts. Prompt treatment may help prevent more serious complications.

Supportive care services may also include educating you about your illness and prognosis, offering psychosocial support, coordinating care among the health professionals, helping with advance care planning and providing assistance to caregivers.

An oncology nurse navigator is a nurse with oncology-specific clinical knowledge. Although this person may have varying titles at different cancer centers, he or she will be key in accessing supportive care services, serving as your liaison with the health care team who can coordinate your care with other specialists; connecting you with psychosocial support services; providing survivorship or care transitions; finding community resources; and being your advocate. The navigator can also identify a need for home-based care and screen for other unrelated health conditions. Although many cancer centers have an oncology nurse navigator, not all centers will. Ask your medical team who can assist you with these functions. It is recommended you seek assistance soon after diagnosis because the course of myelofibrosis can be difficult to predict.

Following are some symptoms and side effects that may occur with myelofibrosis or during treatment.

Potentially Severe Side Effects

Severe side effects are not common but can occur with certain types of treatment. Ask your doctor if you are at risk and how to identify the signs. Contact your doctor right away if they occur.

  • Bleeding problems (hemorrhages) and bruising may occur. Make sure your health care team is aware of any history of bleeding problems, and contact them immediately if you experience any of these symptoms: blood in your stools or black, tar-like stools; pink or brown urine; unexpected bleeding or severe bleeding you cannot control; vomit that looks like coffee grounds; coughing up blood or blood clots; increased bruising, dizziness, weakness or confusion; changes in speech; or a long-lasting headache.
  • Infection can occur as a result of a low white blood cell count (neutropenia) or other factors. Contact your doctor immediately – do not wait until the next day – if you have any of these symptoms: oral temperature over 100.4° F, chills or sweating; body aches, chills and fatigue with or without fever; coughing, shortness of breath or painful breathing; abdominal pain; sore throat; mouth sores; painful, swollen or reddened skin; pus or drainage from an open cut or sore; pain or burning during urination; pain or sores around the anus; or vaginal discharge or itching.
  • Tumor lysis syndrome (TLS) may occur after treatment of a fast-growing cancer, especially certain blood cancers. It is less common but can occur in patients with myelofibrosis. As tumor cells die, they break apart and release their contents into the blood. This causes a change in certain chemicals in the blood, which may cause damage to organs. TLS can potentially cause damage to the kidneys, heart, liver or other organs. Symptoms may include vomiting, diarrhea, muscle cramps or twitches, neuropathy and decreased urination.

Common Side Effects

The following are common side effects to be aware of, but keep in mind that you may not experience all of them. They may be more intense when treatments are given in combination. Many of the side effects included here are also potentially symptoms of myelofibrosis itself, and it is important to identify when new symptoms began in relation to treatment.

Abdominal pain typically occurs in the stomach and may include cramping and dull aches. This type of pain can be more severe and debilitating than the occasional abdominal pain experienced by healthy individuals. Be sure to talk to your doctor openly about any abdominal pain you have so it can be controlled.

Anemia results from an abnormally low red blood cell count. Red blood cells carry oxy-gen to the body’s tissues. Anemia can be temporary or long-lasting, causing low energy, weakness, dizziness, light-headedness, shortness of breath and rapid heartbeat.

Bone pain and an increase in fracture risk can be the result of cytokine changes and changes in viscosity (thickness) from myelofibrosis or from other unknown factors. Pain management specialists are dedicated to keeping you comfortable while helping prevent further bone damage. Your doctor may prescribe medication to lessen bone pain or strengthen bones.

Diarrhea can seriously affect your quality of life. If diarrhea causes distress or keeps you homebound, tell your doctor, who may check for a Clostridium difficile (C. diff) colon infection. Severe diarrhea can lead to dehydration and loss of essential nutrients. Ask about preventive medications and how to rest your bowels, which can reduce and help eliminate symptoms. In time, you may be able to predict when diarrhea will begin based on when you receive treatment, then plan accordingly.

Fatigue related to cancer or its treatments is more severe than general tiredness, lasts longer and may not be relieved by sleep. If fatigue regularly keeps you from your normal activities and things you enjoy, talk with your health care team about your options.

Gout is a condition of increased levels of uric acid in the blood, joints and tissue. It may be a complication of myelofibrosis because the disease causes the body to produce more uric acid, which builds up in the joints and tissues, resulting in painful arthritis and inflammation. Your doctor may prescribe nonsteroidal anti-inflammatory drugs (NSAIDs) to reduce the inflammation.

Graft-versus-Host Disease (GvHD) is a side effect that may occur in allogeneic stem cell transplant patients only. It happens when white blood cells called T-cells from your donor (the graft) recognize healthy cells and tissues in your body (the host) as foreign and attack them. Call your doctor immediately if you experience any of these symptoms: dry eyes and mouth; new rash, tightening, blistering or burning of the skin; jaundice; fever; sudden weight loss; or abdominal pain, bloating or diarrhea.

Headaches may be caused by certain drug therapies. Most of the time, headaches resolve themselves but if they become severe or more frequent, tell your doctor. Keeping a log of symptoms can be useful.

Leukocytosis is a condition where the bone marrow produces too many white blood cells. Symptoms may include fever, trouble breathing, vision problems or bruising and bleeding. Ask your medical team when it is appropriate to contact the doctor’s office.

Mouth sores (oral mucositis) and/or dry mouth can make it difficult to talk, eat or swallow comfortably. Tiny sores begin in the lining of the mouth and can affect the gums, tongue, roof of the mouth and/or lips, with pain ranging from mild to severe.

Nausea and vomiting can usually be prevented, so ask your doctor about antiemetics (anti-nausea drugs) before treatment begins. Commonly, patients are given a prescription for an antiemetic in case these side effects happen. Your doctor may recommend taking it before treatment to prevent nausea and vomiting from happening at all. Severe vomiting can lead to dehydration. Contact your doctor about any of these serious symptoms: more than three episodes of vomiting an hour for at least three hours; blood in vomit; vomit resembling coffee grounds; weakness or dizziness; or being unable to keep your medications down, eat solid food for more than two days or drink more than 8 cups of fluid or ice chips in 24 hours.

Pneumonitis is a general term for inflammation of lung tissue, and it can result from several types of treatment. Symptoms can include difficulty breathing and/or shortness of breath, often with a dry (unproductive) cough, and sometimes chest pain. Contact your doctor as soon as you experience symptoms, as they can signal a serious condition.

Thrombocytopenia is a low number of platelets (thrombocytes) in the blood, which can result from the disease or certain treatments. Symptoms include bruising, bleeding and clotting problems. Patients with thrombocytopenia should avoid taking Omega 3 supplements, aspirin and other blood thinners. If tiny speckled spots or large bruises appear on your arms or legs while undergoing chemotherapy, notify your doctor immediately. Inform your health care team about all nonprescription medicines and supplements you take, as some may add further complications.

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