Your journey with chronic myeloid leukemia (CML) could involve several different treatments. Each of these may have different possible side effects or complications. Not everyone responds the same way to an intervention, so sometimes your doctor may make changes to your treatment plan.
It can help to talk to your doctor in advance about the risk of side effects. This conversation can help you be prepared, especially if your treatment options change.
It can also provide you with an action plan. Read on to learn more about how to start the discussion with your doctor so that you can leave feeling well-informed.
Your treatment plan for CML may include:
- medications, such as those used for targeted therapy or chemotherapy
- a stem cell transplant
- biologic or immunotherapy
Each of these interventions comes with a risk of side effects or complications. Keep in mind, if your doctor recommends a therapy, they’ve judged the potential benefit of the treatment to outweigh the risks.
You should always tell your doctor if your side effects are unusual, unmanageable, or cause you concern. Many side effects can be treated with medication, other therapies, or by making changes in your treatment plan.
Your doctor can give you more information about when you can manage a side effect at home and when you should seek medical attention.
Tyrosine kinase inhibitor (TKI) therapy
TKIs are a type of targeted therapy, meaning they’re used to kill cancer cells without causing damage to healthy cells. For example, medications that are TKIs include:
- imatinib mesylate (Gleevec)
- dasatinib (Sprycel)
- nilotinib (Tasigna)
- bosutinib (Bosulif)
- ponatinib (Iclusig)
For most people, bosutinib and ponatinib are used only after other TKI therapies have been tried.
Common side effects of TKI medication include:
- dry or itchy skin
- muscle pain
- joint pain
Each TKI drug may have its own possible side effects. Your experience will depend on which medication you take and how you respond to it.
In some cases, TKI therapy can have serious side effects, such as anemia, infections, or bleeding. These are rare. Other less common side effects include heart problems, liver problems, lung problems, or fluid retention around the heart and lungs.
Your healthcare team will monitor you for signs of any more serious side effects. If you notice a sudden change that you think could be a side effect of your medication, let your doctor know.
This type of treatment is also called immunotherapy. For example, some people receive therapy such as interferon alfa to manage CML. It may be prescribed to raise low blood counts.
Possible side effects of interferon alfa include:
- red and itchy skin
- symptoms of the flu
- lack of appetite
- sore mouth
- hair loss
It’s also possible for interferon alfa to cause an allergic reaction in some people, but this is rare.
Chemotherapy works by preventing certain types of cells from growing, including cancer cells. The therapy may either kill cells or stop them from dividing.
There are many drugs for chemotherapy, and these are sometimes combined with other treatments. The most common combination of medications that people in treatment for CML receive are cytarabine and interferon alfa.
The side effects of a typical course of chemotherapy for CML include:
- sore mouth
- sore throat
- hair loss
- loss of appetite
- problems with fertility
Your doctor can give you more information about the potential side effects of the specific chemotherapy medication you receive.
Stem cell transplant
A stem cell transplant restores healthy cells in the body.
There are different kinds of transplants used for CML. People who receive an allogeneic stem cell transplant get cells from a donor. These people are at risk for a condition called graft versus host disease (GVHD).
GVHD happens when the donor immune cells attack the body’s healthy cells. Because of this risk, people receive medication to suppress the immune system a day or two before the transplant. Even after taking the preventive drugs, it’s still possible for a person to experience GVHD, but it’s less likely.
Some people with CML may have their spleen removed. The goal of this surgery is to raise blood cell counts or to prevent discomfort if the organ is too big because of CML.
With any surgery, complications are possible. Complications from this procedure can include:
- reduced immune function
Your healthcare team will take steps to reduce your risk of any complications related to surgery. Most people recover from the surgery in four to six weeks.
Your doctor can help you to manage the side effects of CML treatment. Sometimes, that can mean changing to a new therapy.
It may also mean using additional medications to treat specific symptoms. For example, your doctor may recommend prescription or over-the-counter options to reduce nausea or heal a skin rash.
There are also things you can do at home to potentially manage side effects:
- Hydration and light exercise may help with fatigue.
- Protecting your skin from sun may help with rashes.
During treatment for CML, you can take steps to feel more comfortable. Keep up open communication with your doctor.
According to the Leukemia and Lymphoma Society, some people may have side effects after their initial course of treatment ends.
Most people living with CML take TKIs for the rest of their lives. With medical oversight, some people are able to take a reduced dose. It’s important not to adjust your dose unless your doctor recommends it.
Your response to your treatment plan may change over time. You may also experience new side effects if you change TKI medications. Your doctor can tell you what you can expect based on the specific medications you’re taking.
Many people living with CML find valuable information and companionship through connecting with others who live with the condition. It can be helpful and comforting to speak with people who have shared or similar experiences.
Your doctor or local clinic can help you find local support groups. The Leukemia & Lymphoma Society offers information about support groups through their local chapters. The American Cancer Society also has online resources for you to reach out.
All treatment options come with potential side effects, but that doesn’t mean you will experience them. Different people have different responses to medication. By partnering with your doctor, you can manage any side effects that you experience.