Living as a Chronic Myelomonocytic Leukemia Survivor

Since chronic myelomonocytic leukemia (CMML) is rarely cured, most patients never actually complete treatment. Patients may go through a series of treatments with rests in-between. Some people stop active treatment in favor of supportive care. Learning to live with cancer that does not go away can be difficult and very stressful. See Managing Cancer As A Chronic Illness for more about this.

Follow-up care

Even if you have stopped your treatment for CMML, it is still very important to go to all your follow-up appointments. During these visits, your doctors will ask about symptoms, physically examine you, and order blood tests. They will continue to watch for signs of infection and signs that you are moving on to active leukemia. They'll 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 to discuss any concerns you might have.

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

Ask 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 early detection (screening) tests for other types of cancer, or 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 you should 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

Even after treatment, 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 cost a lot, and even though no one wants to think about their cancer coming back or having to continue treatment for a long time, this could happen.

At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to 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 that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as 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 that can extend beyond your risk of CMML or other cancers.

About dietary supplements

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

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being 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.

If the cancer comes back

If the cancer does recur at some point, your treatment options will depend on what treatments you’ve had before, your overall health, and other factors.

For more general information, see Understanding Recurrence.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when cancer is a part of your life. Some people are affected emotionally more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.