If you're in the later phases of chronic myelogenous leukemia (CML), there's a wide variety of ways you may feel. Some people have fever, lose their appetite, and drop a few pounds. But others don't have any symptoms.
No matter how your disease affects your body, make sure you get the emotional support you need. Talk to your friends and family and keep up with contacts you've made in support groups. They can be huge sources of help while you manage your health.
Even if you don't have any symptoms, it's important to have regular visits to your doctor. He may take blood tests that can check if your chronic myelogenous leukemia -- also known as chronic myeloid leukemia -- has moved into an advanced phase.
Why Does CML Get Worse?
For most people with CML, medications prevent the disease from moving to its later phases.
But it can still happen. About 10% to 15% of CML patients reach the advanced phases of the disease, says Elias Jabbour, MD, a leukemia expert at the University of Texas M.D. 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
The first phase of CML, called the chronic phase, is the easiest to treat. But if your diseases advances, you may move into the "accelerated" phase. When this happens, abnormal blood cells and platelets (which help stop bleeding) begin to crowd out normal ones. Several gene glitches cause that, saysJerald P. Radich, MD, of Seattle's Fred Hutchinson Cancer Research Center.
You can also go into 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?
You move into the blast phase when blast cells, another type of white blood cell, make up more than 20% of your blood or bone marrow (the place in your bone where blood cells are made).
During this period, infections and bleeding are common and without treatment can be life-threatening. Fever, loss of appetite, weight loss, and fatigue can get worse.
Treating Accelerated or Blast Phases
If you're in a later phase of CML, your treatment tries to reduce the number of cells that have the BCR-ABL gene, which is involved with the process that tells your body to make too many of the wrong kind of white blood cells. The goal is to return your disease to the chronic phase or put it into remission. That doesn't mean your cancer is completely gone, but it's less active than before.
If you're taking a TKI (tyrosine kinase inhibitor) and your disease continues to advance, 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. It can slow down the advance of the disease in these phases, Radich says, but it can't cure it.
You should also talk to your doctor about whether you might need a bone marrow transplant, also known as stem cell transplant, the only treatment that can cure CML.
"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
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 for people with advanced CML. Tap into your network of close friends and family for advice and help. And talk to your doctor to see if a clinical trial, where you might be able to try experimental treatment, is good idea for you.
Researchers are always looking for new ways to manage chronic myelogenous leukemia. "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."