Symptoms of CML May be Non-Specific
- Chronic myeloid leukemia (CML) is a type of blood cancer that typically grows at a slow pace.
- While people may experience symptoms like fatigue, night sweats, and weight loss, many of the signs associated with CML are non-specific and hard to peg down.
- In the absence of symptoms, CML is often detected during routine blood tests given during regular wellness checks.
- The current standard treatment for patients with CML is a targeted therapy called a tyrosine kinase inhibitor (TKI).
“At the beginning of the disease the majority of patients are asymptomatic and so they may not even be aware of any change in their health. But if CML is left untreated, white blood cells will become unharnessed and uncontrolled,” Dr. Frances Arena, medical director at NYU Langone Arena Oncology and Integration, tells SurvivorNet.Read More
What are the symptoms?A patient who is unaware that they have the disease might think they’re “just not feeling in tiptop shape.” Also, many CML symptoms are similar to those of other illnesses. “When the white blood cells go up, what sometimes will happen is … patients come in anemic, they come in very fatigued, tired, decreased exercise tolerance, unable to do things that they normally do,” Dr. Eric Winer, clinical director of adult leukemia at Dana-Farber Cancer Institute, tells SurvivorNet of possible symptoms. “Sometimes they also come in with infections as well because the white cells that they’re making aren’t normal white cells.”
It is important to note often additional follow up is often required because most patients with just fatigue and weakness do not have CML. Additionally a high white blood cell count by itself is not diagnostic of CML.
CML symptoms may include:
- Fatigue: It’s common for people with CML to feel exhausted. That’s because their bone marrow is no longer able to make enough red blood cells. The reason? The white blood cells are proliferating and crowding them out.
- Weakness: Someone with CML may feel general exhaustion or tiredness in their body. This is usually because of anemia which is the result of the inability of depleted red blood cells to carry oxygen to the body’s tissues.
- Night sweats. These are repeated episodes of very heavy sweating during sleep, heavy enough to soak your night clothes or bed linens. It may be due to an infection.
- Weight loss. Rapidly dividing cells use up large amounts of energy (calories) that the body would otherwise utilize or store as fat.
- Fever. This symptom is more frequent in advanced cases and usually the result of the body fighting an infection.
- Bone pain. When leukemia cells spread from the marrow cavity to the surface of the bone or into the joint, a CML patient may at first experience tenderness in that area. The sensation can progress to a consistent ache or one that may come and go.
- Enlarged spleen. The spleen sits just below the left rib cage. An enlarged spleen usually doesn’t cause any pain and is most often discovered by a physician’s examination. Many conditions including infection, liver disease, as well as some cancers such as CML, can cause the spleen to enlarge.
- Pain or a sense of “fullness” in the belly area. These sensations may mean the cancer cells are building up in the liver and/or spleen creating a feeling of swelling or fullness in the belly.
Without obvious signs, how is CML diagnosed?
A simple blood test, the kind we get during an annual wellness visit, offers the big reveal.
“That’s what makes this illness easy to diagnose,” Dr. Arena points out. “Blood tests are now a routine part of annual examinations.” So, even if a patient isn’t describing symptoms, a blood test will tell the story. The usual sign of CML is an abnormal white blood cell count.
What are treatment options?
“Once diagnosed, patients with CML are treated with a class of oral drugs (pills) called tyrosine kinase inhibitors (TKIs),” Dr. Jay Yang, hematologist, medical oncologist, and leader of the Hematology Oncology Multidisciplinary Team at the Barbara Ann Karmanos Cancer Institute, tells SurvivorNet. “These are targeted medications specifically designed to kill the leukemia cells.”
The most common TKI medications for CML are:
- Imatinib (Gleevec)
- Nilotinib (Tasigna)
- Dasatinib (Sprycel)
- Bosutinib (Bosulif).
In many cases, treatment with TKIs is incredibly effective. “It’s possible to have a treatment-free remission from CML after five years of TKI. In more than 50 percent of patients, the disease will not recur,” Dr. Arena says.
In cases where patients stop responding to TKIs or have a relapse, other treatments may be utilized, including stem cell transplant.
What are the side effects of TKIs?
“Like most chemotherapy treatments, the primary side effect is fatigue,” says Dr. Yang. “But fatigue can also be the result of the disease itself.”
Other side effects of TKI therapy include:
- Nausea, vomiting and diarrhea
- Muscle cramps and bone pain
If treatment doesn’t work
“It’s important for patients to understand that their prognosis is quite favorable with modern treatments. However, patients can sometimes suffer with side effects that interfere with the quality of their life,” says Dr. Yang. “That’s why it’s so important to be honest with your physician about what symptoms and side effects you’re experiencing because there are other options.”
Those options are:
- The initial dose may be increased
- Medication can be switched to different one
- Interferon or “chemo” may be prescribed for patients when TKIs don’t work, or if the patient is unable to take it
- A stem cell transplant may be recommended
The latest medication
In some people, CML cells develop a change in the BCR-ABL gene known as a T3151 mutation. This makes them resistant to standard TKI medication. Ponatinib is the only TKI that can work against T3151 mutant cells. Additional drugs that are effective against this mutation are in the process of being tested.
Hearing you have a form of leukemia can be scary, but the outlook for CML is a positive one — especially if you catch it early.
“The vast majority — 98 or 99% of CML patients — will be found in what we call the chronic phase of the disease. This means the number of mature and immature abnormal white blood cells in the bone marrow and blood is higher than normal, but lower than in the more advanced cases,” explains Dr. Arena.
However, without effective treatment, CML in chronic phase will eventually move into accelerated phase at first and then into blast phase in about 3 to 4 years after diagnosis.
Questions to Ask Your Doctor
- Should I get a second opinion?
- Does the medication you are prescribing give me a good chance of getting this disease under control?
- Are there any side effects to the medication?
- What are the options to relieve side effects?
- Is there a special diet or any changes I can make to my lifestyle that will help improve my outcome?
- Will my insurance cover my treatments?