you or your loved one has been diagnosed with chronic myeloid leukemia (cml). what does it mean and how will it affect you?
this fact sheet will help you:
when you have leukemia, cancerous blood cells form and push out healthy blood cells.
usually affects older adults (65 and older) and is more common in men
cml develops slowly. there may be no obvious signs or symptoms. cml
is often discovered when you have a blood test for another reason. the blood test shows that you have an abnormally high white blood cell count. this large number of white blood cells crowds out other blood cells.
weakness, tiredness, and feeling out of breath during normal activity
– when you have low red blood cell counts
fevers and night sweats
– possibly a response from your immune system
bone pain
– when your white blood cells accumulate, causing your bone marrow to expand
weight loss
– when you are eating less or using more energy
pain or a feeling of fullness below the ribs on the left side
– when your cml cells build up in your liver or spleen, causing your abdomen to swell
with your diagnosis, your doctor can determine the right treatment for you. your test results help your doctor predict how your cml will likely progress and how you may respond to treatment.
the phase of your disease is based mostly on the number of blasts (immature white blood cells) in your blood and bone marrow. knowing the phase of your disease helps doctors plan your treatment. it also helps them predict how your disease will progress.
cml is divided into three phases:
the treatment of cml has improved significantly over the past 20 years. many people with cml go into remission, which happens when the number of cml cells is controlled to a low, nearly undetectable level. today’s drug therapies can offer many people living with chronic phase cml good quality of life and a normal lifespan.
each phase of cml has a different type of treatment. your doctor will determine the best course of treatment for you based on the phase, your test results, and these factors:
the goal of treatment in the chronic phase is to keep the cml cells that contain the bcr-abl1 gene to a very low level. tyrosine kinase inhibitor (tki) therapy is the standard treatment used for chronic phase cml. tkis are taken in pill form. many people are able to manage their cml for long periods of time with tkis. there are several versions of tkis, so if one kind does not work or is difficult to tolerate, other types are available. other treatment options are reserved for uncommon circumstances when tkis cannot be given or do not work – these options include interferon-alpha or chemotherapy, which slows down the production of leukemia cells.
at this stage, the goal of treatment is to get cml back to the chronic phase. standard treatments don’t work as well in the accelerated phase. this is because the cancer cells start to change in new ways, and it’s important to bring down your white blood cell counts.
if you are in the accelerated phase when you are diagnosed with cml, the first treatment option is tkis. if you move from chronic to accelerated cml while taking tkis, your doctor may give you a higher dose or a different medication. since the chance of controlling cml long-term is lower in accelerated phase than in chronic phase, your physician may discuss the possibility of an allogeneic bone marrow transplantation (bmt) with you. bmt is a procedure to replace damaged or destroyed bone marrow with healthy bone marrow cells from a donor.
blast phase cml is more difficult to treat because the leukemia cells have become very abnormal, like more severe forms of leukemia. people with blast phase cml may receive tki therapy and chemotherapy. since the chance of controlling cml long-term is lower in blast phase than in accelerated or chronic phase, your doctor may discuss the possibility of an allogeneic bmt with you.
new treatments for cml mean that you may go into remission and show no signs of the disease for a long time. if your cml has been under control for several years, you may even be able to stop taking medication for cml. this is an option that you can discuss with your doctor.
a small number of people with cml are children and young adults. there is no standard treatment for children with cml, so children should be seen by doctors who specialize in treating pediatric blood cancer.
when you begin cml treatment, you may experience mild to severe side effects, depending on your age, overall health, and treatment plan. most side effects decrease once your body adjusts to treatment or when your treatment ends. new drugs and therapies can help control side effects, such as nausea and vomiting. speak to your doctor if you are experiencing side effects.
the most common side effects of tki therapy are:
tkis can have serious interactions with other prescription medications, over-the-counter medications, supplements, and certain foods. be sure to talk to your doctor about your medications, vitamins, and diet. it is important to have regular blood tests to monitor the response and side effects while on tki.
treatment with interferon may be associated with flu-like symptoms, such as fatigue, fever, and muscle pains. it can also be associated with changes in mood or depression.
if you undergo other forms of treatment, including chemotherapy, you may experience these side effects:
medical follow-up is important during and after treatment for cml. you may need blood tests, bone marrow tests, or molecular tests to determine if you need adjustments to your treatment plan. your medical team should provide you with a care plan listing the frequency of follow-up visits and the tests you will have at those visits.
living with cml can be hard. seek medical help if you feel “down” or “blue” or don’t want to do anything – and your mood does not improve over time.
these could be signs of depression, an illness that should be treated even when you’re undergoing treatment for cml. treatment for depression has important benefits for people living with cancer.
the llsc gratefully acknowledges dr. françois mercier, assistant professor, department of medicine, division of experimental medicine, lady davis institute for medical research, jewish general hospital, for his important contribution to the content of this publication.
for more information, don’t hesitate to contact us: 1-833-222-4884 • canadainfo@lls.org • llscanada.org