Treatment Name: Decitabine (Dacogen®)
How does decitabine work?
Decitabine is designed to help the bone marrow produce more healthy and normal functioning cells.
Goals of therapy:
Decitabine is given to help increase blood cell counts, reduce the risk of infection, reduce the amount of blood transfusions needed, decrease the risk of bleeding, and to prevent MDS from transforming to acute leukemia. Decitabine is not commonly given with the goal of cure for MDS.
- Decitabine intravenous infusion over 60 minutes on Days 1, 2, 3, 4, and 5
Decitabine is usually given in an outpatient infusion center, allowing the person to go home afterwards. On occasion, decitabine may be given in the hospital if someone is too sick.
Decitabine is repeated every 28 days. This is known as one cycle. Treatment is continued until decitabine is no longer working or it is stopped because of unacceptable side effects.
Estimated total infusion time for this treatment:
- 60 minutes
- Infusion times are based on clinical studies, but may vary depending on doctor preference or patient tolerability. Pre-medications and intravenous (I.V.) fluids, such as hydration, may add more time
Click here for common starting doses.
In clinical studies, the most commonly reported side effects with decitabine are shown here. Side effects sometimes have percentage ranges [example 1 – 4%] because they differed between in clinical studies:
On average, 8 - 17% of patients discontinue decitabine due to unacceptable side effects.
How often is monitoring needed?
Labs (blood tests) may be checked before treatment and periodically during treatment. They may be checked more often after the start of therapy until blood counts start to increase. Once blood counts return to safer levels, labs may be checked less frequently. Labs often include: Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), plus any others your doctor may order.
How often is imaging needed?
Imaging may be checked if there is concern for an infection or internal bleeding. Imaging may include: computerized tomography (CT) scans and x-rays.
How might blood test results/imaging affect treatment?
Depending upon the results, your doctor may advise to continue decitabine as planned, or delay or switch therapy
- Your blood counts may initially decrease or remain very low after beginning therapy and blood transfusion may be needed or their frequency may increase. On average, it takes 3 - 4 cycles (= 3 - 4 months) to see an improvement in the White Blood Cell, Hemoglobin, or Platelet count
- A pharmacist should ALWAYS review your medication list to ensure that drug interactions are prevented or managed appropriately
- Clinical trials may exist for MDS. Ask your doctor if any studies are currently enrolling in your area. If not, go to clinicaltrials.gov to search for other centers offering study medications
Patient Assistance & Co-payment Coverage
Patients under the age of 65 years, or those with private insurance plans:
If you have insurance and are looking for patient assistance or copay assistance for Decitabine (Dacogen®), we have provided links that may help.
Visit our Patient Assistance page and click the links to various patient assistance programs for help paying for Decitabine (Dacogen®). Depending upon your income, they may be able to help cover the cost of:
For Branded medications (may be available for generic medications too), check with the manufacturer to determine if a co-pay card is offered and if it could reduce your monthly copay.
- If you are uninsured, check with the manufacturer to determine if you are eligible to receive medication at no cost.
Medicare and Medicaid patients (Patients 65 years or older):
The clinic providing treatment will likely pre-authorize medications and immune therapies such as Decitabine (Dacogen®) and are the best source to help you understand drug cost.
- Ask to speak with a patient assistance technician or financial counselor at the clinic or hospital administering this therapy.
What is Emotional Wellness?
Emotional wellness is having a positive outlook balanced with a realistic understanding of current life events. This requires both an awareness and acceptance of your emotions. It is with this knowledge that you can develop a plan to take the necessary actions to positively impact your life.
Emotional wellness uses an ongoing process to continually reflect on the stressors of life in a constructive manner to move forward and create happiness.
Because emotional wellness is deeply connected with physical, social, and spiritual wellness, pursuing it often becomes particularly difficult in times of major illness. Despite this difficulty, working toward emotional wellness has been connected to improved treatment outcomes and a higher likelihood of achieving goals of therapy.
Learn more about pursuing emotional wellness while receiving treatment with Decitabine (Dacogen®)
What is Myelodysplastic Syndromes (MDS)?
Myelodysplastic Syndromes (MDS) are a group of blood disorders where the bone marrow either fails to make mature blood cells, or immature cells build up and crowd out normal cells preventing them from developing normally.
This often results in the bone marrow producing too few blood cells leading to: 1) A low white blood cell count (neutropenia), which can increase the risk of infection; 2) A low red blood cell count (anemia), which may contribute to weakness, fatigue, or shortness of breath; or 3) A low platelet count (thrombocytopenia), which can increase the risk of bleeding. Depending upon the type of MDS, some patients have neutropenia, AND anemia, AND thrombocytopenia.
In newly diagnosed cases of MDS, the causes are not always known. This is sometimes referred to as “de novo” MDS. However, exposure to certain chemicals, radiation, and chemotherapy are known to increase the risk of MDS. When causes are known, this is referred to as "secondary MDS." There are various subtypes of MDS and treatment depends on the specific subtype and risk level. High risk patients may be treated more aggressively than low risk patients. The effectiveness of treatment often depends upon the type of MDS as not all types respond the same way to treatment.
NOTE: Treatment Options listed below are not all-inclusive. Other treatments may be available. ChemoExperts provides drug information and does not recommend any one treatment over another. Only your Doctor can choose which therapy is appropriate for you.
If you are interested in reading the clinical trials results, please click on references below:
1. Kantarjian H, Issa, JP, Rosenfeld CS, et al. Decitabine Improves Patient Outcomes in Myelodysplastic Syndromes. Cancer. 2006;106:1794-1803.
2. Lübbert M, Suciu S, Baila L, et al. Low-Dose Decitabine Versus Best Supportive Care in Elderly Patients With Intermediate- or High-Risk Myelodysplastic Syndrome (MDS) Ineligible for Intensive Chemotherapy: Final Results of the Randomized Phase III Study of the European Organisation for Research and Treatment of Cancer Leukemia Group and the German MDS Study Group. J Clin Oncol. 2011;29:1987-1996.
Common Starting doses
- Decitabine 20 mg/m2 intravenous infusion over 60 minutes on Days 1, 2, 3, 4, and 5
Note: Individual doses may vary based upon your Doctor's recommendation, or drug availability
What is a CBC?
A Complete Blood Count (CBC) is a frequently ordered blood test that tells clinicians the status of your: 1) White blood cell count, 2) Hemoglobin, and 3) Platelet count at the time the test was taken.
1) White blood cell count (WBC): is used to determine infection risk, or response to chemotherapy. Certain chemotherapy agents may harm our good infection-fighting cells. Sometimes chemotherapy may need to be delayed to allow these cells to recover.
2) Hemoglobin: is used to determine if someone is anemic. Anytime the hemoglobin is below 12 g/dL, the person is said to be anemic. Red blood cell transfusions, and sometimes iron can be given to restore the hemoglobin level, but anemia treatment should always aim at treating the underlying cause or condition.
3) Platelet count: is used to determine if the risk of bleeding is increased or if a platelet transfusion is required to prevent bleeding. Certain medications that increase bleeding risk, such as: aspirin, certain chemotherapy agents, and blood thinners, may need to be stopped temporarily until the platelet count is within a safe range.
What is a CMP?
A Comprehensive Metabolic Panel (CMP) is a frequently ordered blood test that tells clinicians the status of your: 1) Electrolytes & Acid/Base status, 2) Kidney function, 3) Liver function, 4) Blood sugar, and 5) Calcium at the time the test was taken. It is commonly used to monitor liver and kidney function when beginning new medications such as chemotherapy. A total of 14 tests are run simultaneously and are shown below.
Electrolytes & Acid/Base status:
1) Sodium, 2) Potassium, 3) Carbon dioxide, 4) Chloride
5) BUN (blood urea nitrogen), 6) Serum creatinine (Scr)
7) AST, 8) ALT, 9) Total bilirubin, 10) Alk Phos, 11) Albumin, 12) Total protein
13) Serum glucose
14) Serum calcium
What does Cure mean?The word “cure” means there are no cancer cells left in the body and cancer will never come back. Depending on the cancer type and stage, this may be the true goal of therapy. However, it is very difficult to prove all cancer cells are gone. Even though images, like X-rays and MRI’s, and blood tests may not show any signs of cancer, there can be a small amount of cancer cells still left in the body. Because of this, the word “remission” is used more often. This means there are no signs or symptoms of cancer. Patients in remission are followed closely for any signs of cancer returning. Sometimes, more chemotherapy may be given while in remission to prevent the cancer from coming back.
Doctors usually do not consider a patient “cured” until the chance of cancer returning is extremely low. If cancer does return, it usually happens within 5 years of having a remission. Because of this, doctors do not consider a patient cured unless the cancer has not come back within 5 years of remission. The five-year cutoff does not apply to all cancers.