Having chronic myeloid leukemia (CML) also means having a lot of tests, monitoring, and treatments. You may feel overwhelmed at times trying to remember what tests you need to get and how often you need to get them. Here is what you can expect, along with some tips on staying up to date with your tests.
Diagnostic and ongoing tests
Your doctor may recommend these tests to diagnose CML and monitor your condition.
Complete blood count
A complete blood count (CBC) is a test your doctor uses to measure the number and proportions of white blood cells, red blood cells, and platelets in your blood. This test also gives your doctor key information about the size, shape, and variation of the different cells.
People with CML often get what is called a white cell differential along with the CBC. This additional test shows what white cells are in your blood and in what proportion.
Bone marrow aspiration
A bone marrow aspiration (BMA) removes some of your bone marrow with a needle. You may have this test to help diagnose CML as well as to follow how your treatment is going.
Bone marrow biopsy
A bone marrow biopsy (BMB) is a procedure similar to a BMA, but it’s performed less often and by using different equipment. You may have a BMB if your doctor needs a larger sample of marrow or if your BMA is unsuccessful.
Karyotyping is a cytogenetic test. That is, it looks at cells and chromosomes to identify genetic abnormalities. These abnormalities are what cause disease. Karyotyping focuses on about 20 different cells to get its results.
Fluorescence in situ hybridization
The fluorescence in situ hybridization (FISH) test is another cytogenetic test that looks for the BCR-ABL gene. The ABL piece of DNA looks like a red dot, and the BCR looks like a green dot. In healthy cells, these dots show up on different chromosomes. In cells with leukemia, they are fused together.
Polymerase chain reaction
A polymerase chain reaction (PCR) is a test that can find extremely low levels of DNA. It’s used to detect BCR-ABL in your bone marrow cells.
People going through treatment for CML need frequent monitoring and a consistent schedule for this monitoring. Your monitoring will use a combination of the preceding tests to measure your hematologic response, cytogenetic response, and molecular response.
Keeping up with your testing schedule is especially important in the first 18 months after you receive a CML diagnosis or until your body shows signs of responding well to treatment.
The National Comprehensive Cancer Network recommends the following schedule:
Measuring your hematologic response (HR) is important. Your doctor is looking for your white blood cell count to decrease over time. When you were diagnosed, it was likely high. Seeing an HR means that your blood counts have returned to more normal levels. A complete hematological response (CHR) is when the blood counts are at normal levels.
How often? You’ll likely have your levels tested at your diagnosis, and then every 15 days until you’ve reached CHR. After that, you may have it checked every three months or as suggested by your doctor.
Your cytogenetic response is based on how many Philadelphia chromosome-positive cells you have in your bone marrow. The Philadelphia chromosome is a gene abnormality related to CML. A lab technician will count the number of cells in your sample and figure out your specific percentage that way.
Reaching complete cytogenetic response (CCyR) means that no Philadelphia chromosome-positive cells were found in your marrow. You may also receive a result of partial, minor, or minimal cytogenetic response.
How often? Cytogenetic response is usually measured at diagnosis, after three months, and then every six months until you reach CCyR. After that, your doctor will likely measure your levels each year.
Your molecular response is measured by using high-level monitoring. Reaching complete molecular response (CMR) means that the BCR-ABL gene isn’t found in two blood samples in a row.
You may see levels of MR 4.0, MR 4.5, and MR 5.0 instead of just CMR on your test results. This numeric designation is now being used because tests have become much more sensitive. You may also have what is called a major molecular response (MMR). This means the ratio of your cancer cells to your normal cells is less than or equal to 0.1 on the International Scale, a standard of measurement for BCR-ABL.
How often? You’ll likely have your molecular response evaluated every three months until you’ve reached MMR. After that point, you may have the testing done every six months or as called for by your doctor.
The takeaway: Tips for staying up to date
CML treatment involves many tests. Staying on top of them may seem impossible, but it’s important so your doctor can see how your treatment is working. Consider following these tips to keep up to date:
Write it down: You may find that keeping a specific notebook or calendar with your cancer treatments helps you stay on top of things. If you’re better with your phone, set some reminders in your digital calendar. Some offices call to remind patients about appointments and others don’t. Find out your office’s policy to see how they can help you too.
Try to schedule any tests you can for the same day: Grouping your tests together also means there are fewer times you need to go to the hospital or clinic.
Connect with others: If you’re part of a support group, reach out to other people you know with CML to see how they managed all their tests. They may have some invaluable tips and tricks that you can use in your own life.
Let your loved ones help: You don’t need to go to all your appointments and tests by yourself. In fact, having friends and family offer to give you a ride and accompany you can be extremely helpful. Plus, if another person knows your schedule, you’re less likely to miss your appointments.
Ask for your options: You may not have a large support network, and that’s OK. The American Cancer Society has a program called Road to Recovery that offers rides to and from appointments. Call 800-227-2345 to be connected with a volunteer in your area.
Your doctor may know of other options in your area that can help you get to your tests and other appointments.