Decitabine is used in adults to treat a group of blood problems called myelodysplastic syndromes (MDS). Although its brand name Dacogen is no longer available, generic decitabine is currently used for treatment. This medication is a type of chemotherapy called a hypomethylating agent. It’s an injection that’s given through the vein (IV) for either 3 or 5 days during each treatment cycle. Decitabine can cause side effects such as low blood cell counts, headache, and nausea.
In people with myelodysplastic syndromes (MDS), immature blood cells don’t develop properly into normal, healthy blood cells (such as white or red blood cells). Instead, the blood cells continue to grow as immature cells. As a result, people with MDS have a lot of immature blood cells and very few fully-developed, healthy blood cells.
Decitabine is a hypomethylating agent. It works by telling the immature blood cells to grow up and develop into mature, healthy cells. The medication also causes cell death in some immature blood cells.
The following side effects may get better over time as your body gets used to the medication. Let your healthcare provider know immediately if you continue to experience these symptoms or if they worsen over time.
Note: Side effects were reported by people who followed the 3-day treatment regimen for decitabine. Side effects and percentages might differ for people who followed the 5-day treatment schedule.
Contact your healthcare provider immediately if you experience any of the following.
Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.
Check with your doctor or nurse immediately if any of the following side effects occur:
More common
Black, tarry stools
bladder pain
bleeding after defecation
bleeding gums
blood in the urine or stools
bloody or cloudy urine
blue lips and fingernails
blurred vision
body aches or pain
chills
congestion
coughing that sometimes produces a pink frothy sputum
decreased urination
difficult, burning, or painful urination
difficult, fast, or noisy breathing
dizziness, faintness, or lightheadedness when getting up from a lying or sitting position
drowsiness
dry mouth or throat
fainting
fast or irregular heartbeat
feeling unusually cold
flushed, dry skin
frequent urge to urinate
fruit-like breath odor
headache
hives or welts, itching, skin rash
hoarseness
increased hunger
increased sweating
increased thirst
increased urination
lightheadedness
loss of appetite
loss of consciousness
lower back or side pain
mood or mental changes
muscle pain, cramps, spasms, or twitching
nervousness
numbness or tingling in the hands, feet, or lips
pain, redness, swelling, tenderness, or warmth on the skin
pale skin
pinpoint red spots on the skin
redness or pain at the catheter site
seizures
shivering
small clicking, bubbling, or rattling sounds in the lung when listening with a stethoscope
small red or purple spots on the skin, lips or in the mouth
sore mouth, tongue, or throat
sores, ulcers, or white spots on the lips or in the mouth
sunken eyes
swelling of the face, hands, ankles, feet, or lower legs
swollen, painful, or tender lymph glands in the neck, armpit, or groin
tightness in the chest
trembling
trouble in swallowing
troubled breathing with exertion
uncomfortable swelling around the anus
unexplained weight loss
unusual bleeding or bruising
unusual tiredness or weakness
voice changes
vomiting
weakness or heaviness of the legs
wrinkled skin
yellow eyes or skin
Less common
Collection of blood under the skin
deep, dark purple bruise
pain or tenderness around the eyes and cheekbones
pain, warmth, or burning in the fingers, toes, and legs
problems with vision or hearing
skin scrape or burn
swelling at the injection site
Incidence not known
Fever sores on the skin
Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
More common
back pain
belching
bumps on the skin
chest discomfort
falls
hair loss or thinning of the hair
indigestion
loose stools
muscle stiffness
pain in the arms or legs
pain in joints
stomach discomfort or upset
swelling or inflammation of the mouth
trouble sleeping
unusual drowsiness, dullness, or feeling of sluggishness
Less common
Difficulty in moving
general feeling of discomfort or illness
postnasal drip
pressure in the stomach
swollen joints
Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.
Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
Yes, decitabine is typically categorized as a traditional chemotherapy drug. Traditional chemotherapy works by killing cells that grow very quickly, including both healthy cells and cancer cells. Decitabine, at higher doses in particular, can kill cancer cells. But decitabine is also often given at lower doses, such as for treating MDS. At lower doses, decitabine works more specifically to turn on an important pathway that helps the body recognize blood cells that aren’t growing correctly. This allows the body to either destroy unhealthy blood cells or fix them so that they can become healthy blood cells.
Your oncologist will discuss with you when decitabine will be used during your cancer treatment. In general, it depends on many factors, such as what type of cancer you have, your age, and the specific characteristics of your cancer (for example, if you have a specific mutation). Sometimes, decitabine might be the first medication you take to treat your cancer. And other times, your oncologist might start with other medications and bring on decitabine later in your treatment. Talk to your oncologist If you have questions about your overall treatment plan.
The most common side effect of decitabine is having a low blood cell count. For example, it’s common to have low white blood cells in the body. White blood cells are important for your body to fight infection. So when your levels are low, your body might have a hard time getting rid of the infection if you get sick. Decitabine can also cause anemia (low red blood cells) and make you feel tired. In addition, decitabine can cause you to have less platelets in your blood and put you at risk for bleeding. Your oncologist will check your blood cell counts while you’re taking decitabine to make sure the medication is safe for you. Tell your care team if you have any unexpected bruising or bleeding or if you feel very tired. These can be signs of having a low blood cell count.
Sometimes, having a fever is the only symptom you’ll have when you’re sick. It’s important to detect infection early, and one of the best ways to do this is by checking for a fever. This is because MDS and decitabine can cause low white blood cells, which can put you at risk for getting sick and having a harder time recovering from infections. Contact your care team right away if you have a temperature of 100.4 degrees Fahrenheit or higher.
Although it’s possible, most people who take decitabine don’t lose their hair. In a clinical study, fewer than 10% of people who took decitabine reported hair loss during treatment. To help manage any hair loss that you have during treatment, be sure to use a soft-bristled brush, only wash your hair when necessary, and use gentle shampoos. You might also want to talk to your oncologist if you experience hair loss while you’re taking decitabine because there can be other causes of hair loss.
Yes, it’s possible for decitabine to make you feel nauseous. Your oncologist will prescribe anti-nausea medications for you to take on the same day you get chemotherapy; the anti-nausea medications are either taken by mouth or given through your IV. Your oncologist will also prescribe anti-nausea medications for you to have at home to take in between treatments if needed. Contact your oncology care team if you have severe nausea that doesn’t get better with medications.
Decitabine can cause some serious health issues. This risk may be even higher for certain groups. If this worries you, talk to your doctor or pharmacist about other options.
Decitabine commonly causes your blood cell counts to drop. Having low white blood cells can put you at risk for serious and life-threatening infections. Having low red blood cells can lead to problems like feeling more tired and anemia. And having low platelets can put you at risk for easy bleeding.
In particular, you might be more likely to develop low white blood cell counts if you’re older than 65 or if you’ve had chemotherapy or radiation before. Having low blood cell counts is also more common during the first or second treatment cycles of decitabine.
You’ll need to get a blood test done before every decitabine infusion so your oncologist can check your blood cell counts. If your counts are too low, your oncologist might make adjustments to your treatment to give your body time to make new blood cells. These adjustments might include lowering your decitabine dose or delaying your infusion. Your oncologist also might add medications to your treatment to boost the number of white blood cells you have or prescribe antibiotics to prevent infections.
Based on studies and the way the medication works, decitabine could cause harm to an unborn baby if it’s given during pregnancy. If you’re able to become pregnant, you should use effective birth control while you’re taking decitabine and for 6 months after your last dose. And if you’re a male who’s sexually active with a partner who can become pregnant, you should use birth control such as condoms while you’re taking decitabine and for 3 months after your last dose. Contact your oncology care team right away if you or your partner becomes pregnant while you’re taking decitabine.
Although certain medicines should not be used together at all, in other cases two different medicines may be used together even if an interaction might occur. In these cases, your doctor may want to change the dose, or other precautions may be necessary. Tell your healthcare professional if you are taking any other prescription or nonprescription (over-the-counter [OTC]) medicine.