Living With CMML

Many patients with chronic myelomonocytic leukemia (CMML) continue to live full lives after their diagnosis and are minimally affected by their disease.

Patients with more advanced types of CMML frequently have more symptoms, and may experience side effects related to their treatment. However, even with more advanced forms of CMML, patients are living longer lives because of better diagnosis, new therapies, and cancer research.

Anxiety

Anxiety is a normal reaction to cancer. It may increase feelings of pain, interfere with sleep, cause nausea and interfere with the quality of life of you and your family. Most patients who have not had an anxiety condition before their cancer diagnosis will not develop an anxiety disorder associated with their cancer.

It may be difficult to distinguish between normal fears associated with cancer and abnormally severe fears that can be classified as an anxiety disorder. Signs of severe fear may include panic attacks that involve a variety of distressing symptoms such as racing heart, sweating, shaking, shortness of breath, nausea, or feeling faint. Other signs of severe fear may also involve excessive avoidance of certain situations, muscle tension, intrusive thoughts and excessive rumination, recurrent nightmares, memory problems, and difficulty sleeping.

Treatment depends on how the anxiety is affecting your life. Treatment can include providing management of uncontrolled symptoms such as pain, providing information and support, counseling and/or medication.

Blood Count

Virtually all types of myelodysplastic /myeloproliferative syndromes and their treatments affect blood counts.

  • White blood cells help to fight infections
  • Platelets prevent bleeding and bruising
  • Red blood cells carry oxygen throughout your body

Depending on the particular disease, patients may experience symptoms related to either the high or the low blood counts. Treatment options may be different for each patient based on severity and health history. Patients should discuss treatment options with their doctors if they experience any of the following symptoms:

Symptoms of Low White Blood Cells (Neutropenia)

A fever in patients undergoing chemotherapy may be a medical emergency. Contact your health care provider or go to the emergency department if you experience fever greater than 100.5 F with neutropenia after chemotherapy.

  • Chills or sweats
  • Cough, increased mucous production, shortness of breath or painful breathing
  • Soreness, swelling or ulcers in the mouth
  • Pain, burning, urgency, frequent urination or foul smelling urine
  • Redness, pain or swelling of any area of skin or drainage tubes
  • Confusion or listlessness, especially in older adults, can sometimes be a symptom of infection

Symptoms of Low Platelets (Thrombocytopenia)

  • Excessive bruising of the skin
  • Tiny, pinpoint red spots on the skin (called petechiae)
  • Bleeding gums or nosebleeds
  • Excessive bleeding from a small cut, or bleeding that won't stop even after pressure has been applied
  • Dark urine or blood in the urine
  • Blood in stool or from the rectum when after a bowel movement; black-colored stools
  • Menstrual bleeding that is heavier than usual, lasts longer than usual or occurs between periods

Symptoms of Low Red Blood Cells (Anemia)

  • Weakness or fatigue
  • Shortness of breath
  • A faster heart beat or chest pain

Controlling Pain

Pain may be caused by different factors including diagnostic procedures, bone pain or spleen pain related to CMML and other reasons not related to cancer. Pain, if not treated, may impact your quality of life. This is because pain is not only a physical experience but also a psychological and social experience. Pain may interfere with activities of daily living, work, and interpersonal interactions.

Pain can be controlled with effective pain medications. Let your health care team know if you are experiencing pain, so the appropriate pain treatment is implemented.

Pain treatments include a combination of modalities such as analgesics (pain medications), adjuvant medications (increase the analgesic effect of pain medications), anesthetics, massage, use of heat and cold, relaxation, exercise and more.

Pain management programs are available through the Abramson Cancer Center.

Depression

Depression is a disabling illness that affects about 15 to 25 percent of cancer patients. Everyone who is diagnosed with cancer will react to the diagnosis in different ways and may not experience serious depression or anxiety.

Sadness and grief are normal reactions to the crises faced during cancer and will be experienced at times by most people. Major depression is not simply sadness, but has common symptoms that can be diagnosed and treated. Just as patients need to be evaluated for depression throughout their treatment, so do family caregivers, who may be an increased risk for depression.

Mild symptoms of depression can be distressing and may be helped with counseling. However when symptoms are intense and long lasting, or when they keep coming back, more intensive treatment is needed.

Symptoms can include feeling sad or empty most of the time, being tearful, losing interest in activities, weight and appetite changes, difficulty sleeping, feeling slowed down or sped up, having no energy, feeling excessively guilty or worthless, having difficulty concentrating or making decisions, or thinking about dying or suicide. Of course, some of these symptoms may be the direct result of your treatment or disease and not due to depression, so you should discuss your concerns with your medical team.

Eating Well

Eating well during cancer treatment can be difficult at times but good nutrition during treatment can help decrease hospitalizations and delays in treatment and general well being.

Patients undergoing cancer treatment at Penn Medicine, or those who have completed cancer treatment, may benefit from nutrition counseling services at the Abramson Cancer Center. For more information about nutrition counseling, speak with your physician or nurse.

Fatigue

People with cancer may feel tired during and after treatment. Radiation therapy, chemotherapy, surgery and other treatments may cause you to have less energy. An infection, fever, poor nutrition, decreased activity, depression and stress can also cause fatigue.

Being tired can impact work, concentration and participation in family or social activities. Even after cancer treatment ends, it may be a while before you feel strong again. The following tips can help conserve energy:

  • Prioritize activities
  • Delegate things that are less important
  • Take short rests as needed
  • Walk or exercise
  • Get a good night’s sleep
  • Eat frequent, small, nutritious meals for more energy
  • Ask about medicines to help with fatigue

Stress

Coping with the stress of cancer and treatment side effects is challenging. Many cancer patients experience anxiety and feelings of depression. Feeling overwhelmed, hopeless, isolated, tearful, and having difficulties concentrating is common. Speaking with a counselor or practicing relaxation techniques can help some people feel better. Relaxation techniques can help with sleep, energy and reducing anxiety.

There are different methods to help relieve day-to-day stress. A simple relaxation exercise that can be done through the day includes:

  • Finding a quiet place.
  • Staring at an object or close the eyes and thinking of a peaceful scene.
  • Taking a deep breath in through the nose and breathing out through the mouth, pushing all of the air out of the lungs.
  • Placing one hand on the abdomen while taking a breath in through the nose and let it out through your mouth, focusing on the way the muscles are working to help breathing.

Cancer counseling services at Penn Medicine offer support and information about stress and concerns you may face as you undergo cancer treatment. Services also include psychological and spiritual counseling.

Talking to Family and Friends

While friends and family may try to do everything they can to help, it's normal to feel sad, alone or out of control. It’s normal to experience difficulty speaking to friends and family who have not had cancer and haven't had the same experiences.

Many people who have been through cancer treatment say it helps to get a sense of connection with a support network. Support groups are usually free of charge and led by trained staff. Other patients prefer working one-on-one with someone who has special training and experience in counseling people with cancer.

Family and friends may also benefit from counseling or support groups.

Cancer counseling services at Penn Medicine offer support and information about concerns cancer patients may face as they undergo cancer treatment.

The Abramson Cancer Center offers psychological and spiritual counseling. For more information about counseling services at the Abramson Cancer Center or to make an appointment, call 800-789-7366 (PENN).