Juvenile myelomonocytic leukemia (JMML)

Overview

JMML is driven by gene changes in the RAS pathway. Some children with Noonan syndrome have a form that goes away on its own.

Most children need a stem cell transplant, the main treatment that can cure it.

Symptoms

Common signs:

• Belly swelling from a large spleen or liver
• Pale skin and tiredness
• Easy bruising

Less common

• Fevers or infections
• Rash
• Poor growth

Look up a symptom: Bruising easily or bleeding for a long time · Fever · Lump or swelling in a child's belly · Pale skin · Rash

When to get medical care

Causes

Changes in a cell's genes that make it grow out of control. Most happen by chance; some are linked to the risk factors below or to inherited genes.

Does it spread or run in families?

• Cancer isn't contagious. You can't catch it from someone.

Who is more likely to get it

• Neurofibromatosis type 1
• Noonan syndrome

Diagnosis

Tests look for the cause. Many people checked for these symptoms turn out not to have cancer.

Questions you may be asked

• When symptoms started and whether they're getting worse
• Family history of cancer
• Past illnesses, treatments, and exposures

The exam

A physical exam, focused on where the symptoms are.

Tests

Tests, if needed:

• Complete blood count (CBC):
• Bone marrow biopsy:
• Gene tests:

Treatment

Treatment depends on the type, stage, and your child's overall health. A cancer care team makes a plan with you.

Self-care

• Write down symptoms and when they started
• Bring someone with you to appointments
• Ask for copies of test results
• Ask about clinical trials: they can offer new treatments

Stem cell transplant, sometimes hypomethylating drugs first.

Prevention

To lower risk or find it early:

• No known way to prevent it

Which doctor treats this

• Start with your child's pediatrician.
• They'll send you to a pediatric oncologist (children's cancer doctor) at a children's cancer center.

Living with it

• Keep a simple notebook of symptoms, medicines, and questions for visits.
• Ask for a survivorship care plan when treatment ends.
• Gentle activity, like walking, can ease tiredness.
• A cancer diagnosis can affect mood. Tell the care team if you or your family feel down or anxious.

Support groups and helplines

• American Cancer Society: Help 24/7 at 1-800-227-2345, rides to treatment, and support programs.
• National Cancer Institute: Cancer Information Service: Free answers from cancer information specialists: 1-800-422-6237.
• American Childhood Cancer Organization: Support and resources for families of children with cancer.

Back to school, work, or sports

• Most children can return to school during or after treatment.
• Ask the care team about a school liaison and a 504 plan or IEP for extra help.

Children, pregnancy, and older adults

• Children: Children with cancer do best at a children's cancer center, where care teams also help with school, growth, and long-term health.

For caregivers

• Go to visits when you can and take notes.
• Keep a list of medicines, allergies, and doctors in one place.
• Learn the warning signs that need fast care, like fever during treatment.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Outlook depends on the type and stage. Cancers found early are usually easier to treat, and treatments keep improving.

Support is available: ask about social workers, nutrition help, and support groups.

Getting ready for your visit

Bring a list of symptoms and medicines.

What to bring

• A list of medicines and supplements
• Notes on when symptoms started
• Past test results and scans

Questions to ask

• Does my child need a transplant?
• Should our family have genetic testing?
• What stage is it, and what are the treatment options?
• Are there clinical trials for my child?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Juvenile myelomonocytic leukemia (JMML)