Living With Chronic Myelogenous Leukemia: A Lifelong Challenge

Patient Expert
Michele Tschirhart

Being diagnosed with cancer is one thing; living with cancer for the rest of your life is another. When you’re first diagnosed with cancer, there are many questions. Will I live or die? Is there a treatment for my disease? How many treatment options are available? What is my prognosis? And one very important question that is most often overlooked: how will my diagnosis and treatment affect the rest of my life?

Chronic myelogenous leukemia (also known as chronic myeloid leukemia or CML) is a type of cancer that is unlikely to be cured but can be controlled successfully through targeted therapy for decades. This therapy most likely will continue throughout the patient's lifetime and will become a juggling act between controlling the disease and managing side effects—from the medication, as well as the cancer.

While the good news for those diagnosed with chronic myelogenous leukemia is that they have a high probability of living a normal lifespan, the less than desirable news is that their treatment comes with a host of drawbacks and complications.

Costs

The obvious drawback is the treatment and medication are extremely expensive. If you are not fortunate to have good health insurance, the burden of care will likely land you in the poorhouse.

There is also the added complication of finding a hematological oncologist in your area that specializes in CML. If you do not have a CML specialist overseeing your treatment you may be putting your life at risk. Finding a specialist often incurs the added expense of travel to your already expensive treatment.

Medications and side effects

Another drawback of living with chronic myelogenous leukemia is the fact that you will be taking a powerful medication, known as a tyrosine kinase inhibitor, for the rest of your life. While this medication saves your life and keeps your CML under control, it can also wreak havoc on the rest of your body.

Patients often find themselves taking other medications to try and alleviate the side effects caused by their leukemia medication. This makes everyday life a bit more challenging, with side effects ranging from mild to severe.

"You will likely be expected to act as though you were never sick, when in fact, you will be sick for the rest of your life. There will be days when you feel like giving up, and there will be days that you once again feel as though you are on top of the world."

Sometimes these side effects make life challenging and uncomfortable; other times they may be life-threatening. The long-term effects of these drugs are still unknown, and one can only imagine the effect that they are having on other organs in your body. But because these drugs keep you alive, you are willing to risk these uncertainties.

A new normal

As with most chronic illnesses, there is also the day to day living. Most likely, once the initial scare of being diagnosed with "cancer" and understanding that you will likely live a long time with this cancer, a new normal will set in.

Your family and friends will either return to their own normal, forgetting that you will have cancer for the rest of your life, or they will disappear, as though your cancer may be contagious. They will begin to expect you to return to your old self and may not understand that you are no longer the same person you were, both physically and emotionally.

You will likely be expected to act as though you were never sick, when in fact, you will be sick for the rest of your life. There will be days when you feel like giving up, and there will be days that you once again feel as though you are on top of the world.

Thriving with CML

You can look at life with chronic leukemia in two ways: on the one hand, you never achieve remission and survivorship; on the other hand, you are perpetually in survivorship.

You will begin to accept that your world and life have changed, and you will have to learn to be kind to yourself. Understand that you need to say no to overextending yourself just to please others, because it will do nothing but put yourself at risk for setbacks, and misery for days.

Understand that fighting for your life, every single day of your life, for the rest of your life takes a certain strength that most people will never have to tap into, and will most likely never understand.

You may find that your outlook on life is a bit different than it used to be and that things that used to be important to you before, are no longer important to you now. You may have an appreciation for life which you have not yet experienced and you may also have a sense of urgency to accomplish your dreams and goals.

However you choose to follow your journey, know that there is no right or wrong way to do so, and know that you must follow your heart into a life of uncharted waters.

See more helpful articles:

Leukemia: The Basics

Leukemia Types and Their Characteristics

How Leukemia Is Diagnosed in Adults