Feeling Sick With CML: Coping With Later Phases
Sujana Movva, MD
When you’re in the advanced stages of CML, you may feel sick and have a wide range of symptoms -- or none at all. Here’s what’s going on inside your body and how to feel as good as possible.
How Do You Know Your CML Has Progressed?
You might feel ill, but not necessarily.
Some people with advanced CML have fever, less appetite, or weight loss. But not everyone does. You might not have any symptoms and find out through blood tests that your CML has progressed.
That’s why regular doctor visits are key.
“With chronic disease, be religious about monitoring, so if you were to slip into the accelerated phase you can catch it quickly,” says Jerald P. Radich, MD, of Seattle’s Fred Hutchinson Cancer Research Center.
Why Does CML Progress?
For most people with CML, medications prevent the disease from advancing to its later stages.
But it can still happen. About 10% to 15% of CML patients reach the advanced stages of the disease, says Elias Jabbour, MD. He's a leukemia expert at the University of Texas MD Anderson Cancer Center in Houston.
It can happen if you don’t take your meds, if your disease was already advanced when doctors found it, or if your body stops responding to the medication you're taking.
The Accelerated Phase
In this phase, abnormal blood cells and platelets (which help stop bleeding) begin to crowd out normal ones. Several gene glitches cause that, Radich says.
You can also progress to this phase if you develop very high or low platelet counts or high white blood cell counts that don't respond to treatment.
What Is CML Blast Crisis?
CML is in blast phase when blast cells -- another type of white blood cell -- make up more than 20% of your bone marrow or blood.
During this phase, infections and bleeding are common and can be life-threatening. Fever, loss of appetite, weight loss, and fatigue can worsen.
Treating Accelerated or Blast Phases
The goal of treatment in later phases is to replace all cells that have the BCR-ABL gene and return your disease to the chronic phase or put it into remission.
If you’re taking a TKI (tyrosine kinase inhibitor), the most common type of CML medication, your doctor may switch you to a new one or suggest another type of drug or chemotherapy.
At this point, there are limits to what TKI therapy alone can do. They can slow down progression in these phases, Radich says, but they can’t cure the disease.
You should also talk to your doctor about whether you might need a bone marrow transplant, also known as stem cell transplant.
“I would tell patients, 'We are dealing with aggressive disease, so we need to look for donors and have a plan for long-term care,'” Jabbour says.
Use Your Support Network
If your CML gets to the advanced stages, reach out to friends and family for support. Let them know what would help you, or when you would like company.
Your doctors are also part of your support team. As you follow their medical advice, you can ask them about resources, like support groups or counseling, that might help.
Try to stay positive, too, because there's lots of room for hope. "We are constantly improving our treatments," says Amir Fathi, MD, of Harvard Medical School. "CML is among the most exciting areas of therapeutic improvement in the last 10-15 years, and it continues to get better."