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:
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
Dizziness or lightheadedness
Shortness of breath
Low white blood cell count
More susceptible to infections (a weakened immune system)
A low number of platelets
Bruising and bleeding
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.
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
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?
Here are some additional links that may provide more resources for you and your loved ones. Organizations, including some of the ones listed, can provide help in finding ways to pay for medicines, transportation, and other types of support services. Depending on the treatment, the manufacturer may have a support program to help you.
Celgene takes no responsibility for the content of these resources.
This is a resource with details about differentiation syndrome and other potential side effects of IDHIFA. It also includes cards for you and your loved one to cut out and keep in your wallets.
What Is IDHIFA?
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.
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:
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)
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:
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.