Living as a Chronic Myelomonocytic Leukemia Survivor

Chronic myelomonocytic leukemia (CMML) can be treated, and some people can live with it for a long time. But CMML is often hard to cure. Because of this, many people with CMML might never be completely finished with treatment.

If you are living with CMML, you may go through periods when you need treatment (such as when you have symptoms) with rests in between. You might get different types of treatments at different times, including supportive care.

Learning to live with cancer that doesn’t go away can be stressful. But there are steps you can take to help you live as well as possible, both physically and emotionally.

Follow-up care

Whether or not you are being treated for CMML, it is still very important to go to all your follow-up appointments.

During these visits, your cancer care team will ask about your symptoms, examine you, and order blood tests. They will continue to watch for signs of infection and signs that the CMML might be progressing to an acute leukemia.

They will also watch for short-term and long-term side effects of treatment. This is the time for you to ask your health care team any questions and discuss any concerns you might have.

Managing side effects

Almost any cancer treatment can have side effects. Some side effects might last for just a few days or weeks, but others might last longer.

Don’t hesitate to tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them.

Asking your doctor for a survivorship care plan

Your survivorship care plan might include:

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as tests to look for long-term health effects from your cancer or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when to contact your doctor
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care

Keeping health insurance and copies of your medical records

It’s very important to keep your health insurance. With a chronic disease like CMML, your treatment may never really be over. Tests and doctor visits can cost a lot, and even though no one wants to think about having to continue treatment for a long time, this could happen.

At some point, you might find yourself seeing a new doctor who doesn’t know your medical history. It’s important to keep copies of your medical records (or have access to them) so you can give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of CMML progressing or coming back?

If you have (or have had) CMML, you probably want to know if there are things you can do to possibly lower your risk of it growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. At this time, it’s not yet clear if there is anything you can do to lower this risk.

Adopting healthy behaviors like not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health, including helping you feel better.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of CMML progressing. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

In the United States, dietary supplements are not regulated like medicines. They don’t have to be proven effective (or even safe) before they are sold, although there are limits on what they’re allowed to claim they can do.

If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when CMML is a part of your life. Some people are affected more than others, but everyone can benefit from help and support. This support could come from friends and family, religious groups, support groups, professional counselors, or others.

Learn more

• Coping and Living Well During Cancer Treatment
• Managing Cancer As A Chronic Illness