Information for Family and Friends

Caring for a loved one who is not feeling well can be a lot of work. This section of the Web site is for people like you who are caring for someone with MDS.

How can I help my loved one prepare for treatment?

You can help your loved one prepare for treatment by being supportive of his/her needs. You can help him/her organize what he/she needs to bring to the treatment center and be there to listen to his/her needs and concerns.

How can I help my loved one after treatment?

Your loved one may have side effects from treatment. You can help by watching for a fever, signs of an infection, or signs of your loved one bleeding or bruising more easily than usual. These are signs of low blood cell counts and could be serious. If you notice any of these signs, call your loved one's healthcare provider right away.

I sometimes need a break from taking care of my loved one, but I feel bad. What should I do?

It is common for caregivers to feel tired or upset and to want time to themselves. After taking care of your loved one, you have very little time left to take care of yourself. It's important to get your rest, eat right, and ask for help. There are resources available to help you in caring for your loved one.

What resources are available to support me?

As a caregiver, you are one of many people who help to take care of a loved one. There are many support groups that you can participate in to meet other people who share your experiences. Talk to your loved one's healthcare provider about resources in your area that may be able to help you.

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DACOGEN is a prescription medicine indicated for treatment of patients with myelodysplastic syndromes (MDS), including:

Previously treated and untreated MDS
De novo (cause unknown) and secondary (treatment-related) MDS:
  • All French-American-British (FAB) subtypes (refractory anemia, refractory anemia with ringed sideroblasts, refractory anemia with excess blasts, refractory anemia with excess blasts in transformation, and chronic myelomonocytic leukemia)
  • Intermediate-1, intermediate-2, and high-risk International Prognostic Scoring System (IPSS) groups


Treatment with DACOGEN is associated with serious, sometimes fatal, blood disorders including:
  • fewer white blood cells (neutropenia and leukopenia), platelets (thrombocytopenia), and/or red blood cells (anemia)
  • fever associated with low white blood cell counts (febrile neutropenia)
  • bone marrow suppression
  • infections
Your doctor will test and monitor your blood cells before and during treatment with DACOGEN. Your doctor may prescribe medicine to help manage your blood cell counts and/or medicines to prevent or treat infections. Your doctor may need to delay your treatment and/or reduce your dose if you experience certain side effects. Patients should monitor and report any symptoms or fever to their doctor as soon as possible
Harm to a fetus when administered to a pregnant woman: Women of childbearing potential and men with female partners of childbearing potential should use effective contraception and avoid pregnancy while taking DACOGEN
Other common side effects including:
  • feeling tired (fatigue)
  • fever (pyrexia)
  • nausea
  • cough
  • reddish or purplish spots (petechiae)
  • constipation
  • diarrhea
  • high blood sugar (hyperglycemia)
DACOGEN should be used with caution if you have kidney or liver problems
You are encouraged to report side effects of DACOGEN® (decitabine), please contact Otsuka America Pharmaceutical, Inc. at 1-800-438-9927 or FDA at 1-800-FDA1088 (