For caregivers

As a caregiver, you have the important and often challenging role of providing emotional and physical support for someone with relapsed/refractory AML.
If you already have experience as a caregiver for someone with AML, you may notice that your role evolves as the disease changes. If this is your first time caring for someone with AML, you may be unsure of what your role is. Know that you and your loved one are never alone, and that support is there for you each step of the way.

Your role as a caregiver

As a caregiver, you will have many roles, and your roles change day-to-day. You may feel as though you are called upon to be a chauffeur, nurse, cheerleader, or counselor. If you have experience as a caregiver, you may already be aware of all these different responsibilities. If this is your first time caring for a loved one, or your first time caring for someone with a relapse, you may feel as though you don’t know where to begin. The following information will offer advice on how you can best help in the care of someone with AML. Keep in mind that your role as caregiver may change depending on what stage of treatment your loved one is in. We will discuss:
  • Providing emotional support
  • Helping with daily activities
  • Staying organized
  • Working with the healthcare team

AML & its impact on your loved one

Those living with AML often have a low number of healthy blood cells in their body because leukemia cells (blasts) multiply and crowd out the normal, healthy cells. Having a low number of healthy cells is known as a cytopenia. There are several different types of cytopenia, depending on what type of blood cell is affected.

Type of cytopenia:

Type Of Cytopenia



Low red blood cell count
  • Feeling tired
  • Weakness
  • Dizziness or lightheadedness
  • Headaches
  • Shortness of breath
  • Neutropenia
  • Leukopenia
Low white blood cell count
More susceptible to infections (a weakened immune system)
A low number of platelets
  • Bruising and bleeding
  • Frequent nosebleeds
  • Bleeding of the gums

If you notice any of these symptoms, contact the doctor right away.

Encourage your loved one to eat and drink right, get enough rest, and reduce physical activity. To decrease the chance of infection, help them avoid contact with sick people, and practice good hygiene.

caring for a loved one with acute myeloid leukemia

Model used for illustrative purposes only

Caring for your loved one

Providing emotional support

Finding out that AML has come back can be stressful for both a patient and their caregiver. The patient may feel as though he or she does not have the energy to go through another round of therapy.

You may feel like you aren’t sure what kind of emotional support your loved one needs. Staying positive, being patient, and having an open mind can help both of you cope with a tough diagnosis.

Here are some practical ways to provide emotional support:

  • Be there to listen
  • Let your loved one set the pace and tone of conversations
  • Provide encouragement
  • Be patient and understanding if he or she is no longer able to do something
  • Help your loved one find a support group if he or she wants to join

Helping with daily activities

AML can often impact a patient’s ability to perform simple tasks. Their daily routine may change, and they may need more help than they did in the past. As a caregiver, you can ease some of the pressure that someone with AML feels by helping him or her with everyday activities.

Some activities that you could help with include:
  • Driving to appointments and running errands, such as grocery shopping
  • Helping around the house
  • Helping with personal care, such as bathing, dressing, and eating
  • Helping to figure out medical expenses and insurance coverage
  • Monitoring and/or giving medicines

Working with the healthcare team

Communication is key

The healthcare team can be your most valuable ally. And, as a caregiver, you will be helpful to the entire healthcare team. Make sure that you have open conversations with the doctor and nurse, and that you are comfortable discussing all aspects of AML and your loved one’s prescribed treatment.

Some questions you may want to ask the healthcare team:

  • How will we know if there has been a change in his or her condition?
  • How will we know if a treatment is working?
  • What are common side effects of the treatment?
  • What symptoms should we look out for?

Some questions that you will want to ask about the practice:

  • When is the office open?
  • Who should we contact outside of office hours or if there is an emergency?
  • Who can we go to for questions when the doctor is unavailable?
  • Can we get the results of lab tests on our computer?
  • Do you know of any local support groups that we can contact?


IDHIFA® (enasidenib) is a prescription medicine used to treat people with acute myeloid leukemia (AML) with an isocitrate dehydrogenase-2 (IDH2) mutation whose disease has come back or has not improved after previous treatment(s). It is not known if IDHIFA is safe and effective in children.

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What is the most important information I should know about IDHIFA?

IDHIFA may cause serious side effects, including:

  • Differentiation Syndrome. Differentiation syndrome is a condition that affects your blood cells which may be life-threatening or lead to death if not treated. Differentiation syndrome has happened within 10 days and up to 5 months after starting IDHIFA. Call your healthcare provider or go to the nearest hospital emergency room right away if you develop any of the following symptoms of differentiation syndrome while taking IDHIFA:
    • fever
    • cough
    • shortness of breath
    • swelling of arms and legs
    • swelling around neck, groin, or underarm area
    • fast weight gain (greater than 10 pounds within a week)
    • bone pain

If you develop any of these symptoms of differentiation syndrome, your healthcare provider may start you on a medicine taken by mouth or given through a vein (intravenous) called corticosteroids and may monitor you in the hospital.


Before taking IDHIFA, tell your healthcare provider about all of your medical conditions, including if you:

  • Are pregnant or plan to become pregnant. IDHIFA can cause harm to your unborn baby if taken during pregnancy
    • If you are able to become pregnant, your healthcare provider will do a pregnancy test before you start taking IDHIFA
    • Females who are able to become pregnant and who take IDHIFA should use effective birth control (contraception) during treatment with IDHIFA and for at least 1 month after your last dose of IDHIFA
    • Males who have female partners that are able to become pregnant should use effective birth control during treatment with IDHIFA and for at least 1 month after your last dose of IDHIFA
    • IDHIFA may affect how hormonal contraceptives work and may cause them to not work as well
    • Talk to your healthcare provider about birth control methods that may be right for you while taking IDHIFA
    • IDHIFA may cause fertility problems in females and males, which may affect your ability to have children. Talk to your healthcare provider if you have concerns about fertility
  • Are breastfeeding or plan to breastfeed. It is not known if IDHIFA passes into your breast milk. You should not breastfeed during your treatment with IDHIFA and for at least 1 month after your last dose of IDHIFA

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

How should I take IDHIFA?

  • Take IDHIFA exactly as your healthcare provider tells you to
  • Take IDHIFA 1 time a day at the same time each day. IDHIFA can be taken with or without food
  • Swallow IDHIFA tablets whole with 8 ounces (one cup) of water. Do not chew or split the tablet
  • If you miss a dose of IDHIFA or vomit after taking a dose of IDHIFA, take the dose of IDHIFA as soon as possible on the same day. Then take your next dose the next day at your regularly scheduled time. Do not take 2 doses at the same time to make up for the missed dose
  • Your healthcare provider should do blood tests to check your blood counts before you start IDHIFA treatment and at a minimum of every 2 weeks for at least the first 3 months during treatment to check for side effects

What are the possible side effects of IDHIFA?

IDHIFA may cause serious side effects, including:

See "What is the most important information I should know about IDHIFA?"

The most common side effects of IDHIFA include:

  • nausea
  • vomiting
  • diarrhea
  • jaundice
  • decreased appetite

Tell your healthcare provider if you have any changes to the color of your skin or the whites of your eyes.

Your healthcare provider will monitor you for side effects during treatment and may tell you to stop taking IDHIFA if you develop certain side effects. These are not all the possible side effects of IDHIFA. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

General information about the safe and effective use of IDHIFA

Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. Do not take IDHIFA for conditions for which it was not prescribed. Do not give IDHIFA to other people, even if they have the same symptoms you have. It may harm them. You can ask your pharmacist or healthcare provider for information about IDHIFA that is written for health professionals.

Please see full Prescribing Information, including Boxed WARNING and Medication Guide.

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idhifa for relapsed refractory aml with an idh2 mutation

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