Caring for Loved Ones
We’re here for you, too
As a caregiver, you take on a lot more responsibility—and you may feel unsure about where to start. Caregivers help in many ways that are unique to each individual and family. Your role could change over time, but what won’t change is the positive impact you can have on your loved one’s life.
Your role as a caregiver involves different kinds of support:
Coordination
- Going grocery shopping and preparing meals
- Keeping track of finances and managing insurance coverage
- Driving your loved one to appointments and staying with them during visits
Care
- Cleaning, doing laundry, and helping with other household chores
- Assisting with personal care, like eating, bathing, and dressing
- Giving medication and setting up a treatment plan
Connection
- Listening and encouraging them to share their feelings and set goals
- Talking with other family members and friends to keep them informed
- Helping with treatment decisions and communicating with the healthcare team
Caring for your child
You already provide for your child in many ways, but caring for a child with acute leukemia brings new challenges and worries. Throughout your child’s journey with AML or ALL, you have likely experienced a wide range of emotions. You may feel that life for your child and family will never be the same. And you have likely found ways to adapt and gradually develop a new normal for you and your family. No matter where you are on this journey, support can go a long way.
Caring for yourself
The care you provide makes a huge impact in your loved one’s daily life. Playing such an important role in the care of others can feel overwhelming at times, both physically and mentally. And you’re likely feeling the emotional impacts of cancer as well.
It’s important to make time for yourself and take care of your own needs so that you stay healthy and well. And don’t be afraid to reach out for help. Remember, you and your loved one are not alone.
Below are a few other resources dedicated to providing support for caregivers
Caregiver Action Network
CaregiverAction.org
Help Desk:
855-227-3640
Family Caregiver Alliance
Caregiver.org
National Alliance for Caregiving
Caregiving.org
Well Spouse Association
WellSpouse.org
Syndax is not affiliated with the organizations mentioned above and is not responsible for the content or availability of these resources. The information provided is for educational purposes only and is not meant to replace the advice of a healthcare professional.
Revuforj Ready
How to prepare for Revuforj treatment
It may feel discouraging when you find out the disease has come back or did not improve after the previous treatment. And it may be overwhelming for you and your loved one to start a new treatment journey.
Here are 3 things to keep in mind as you begin with Revuforj
1
Understand the goal of treatment with Revuforj
- The goal of treatment is remission
- 21% of people in the clinical trial achieved complete remission (CR) or complete remission with a partial hematologic recovery (CRh)
Learn more about the Possible Benefits of Revuforj seen in the clinical trial.
2
Know the signs and symptoms of serious side effects that may occur
- Symptoms of differentiation syndrome include fever, cough, shortness of breath, severe headache, confusion, dizziness or lightheadedness, fast weight gain, swelling of arms, legs, neck, groin, or underarm area, and decreased urination
- Symptoms of QT prolongation include feeling faint, lightheaded, or dizzy, or irregular or fast heartbeats
Get more information about Side Effects
and what actions to take.
3
Stay organized and help your loved one set and stay with a plan
- Save all appointment dates, times, and locations, as well as names and phone numbers of all doctors and emergency care team members, on your and your loved one’s phones
- Set reminder notifications for appointments and daily Revuforj dosing times
- Use a journal or an app to keep track of how your loved one is feeling, and other important things you may wish to share with the healthcare team
- You can also reach out to an organization who can help provide you with more information and helpful tools
Check out the Revuforj Routine for ways to make it easier to stay on Revuforj.
Make the most of every visit
Frequent doctor appointments can make up a large part of your role as a caregiver. Being prepared and knowing what to expect at doctor visits can help you feel empowered as you advocate for your loved one and support their treatment decisions.
Here are some helpful tips to keep in mind when talking with members of the healthcare team:
-
Before each appointment, talk with your loved one about any questions or information they want to bring up with the doctor or the healthcare team
-
Write your questions in a notebook so you don’t forget to ask them—and so you can take notes during the visit
-
Mention any symptoms or changes you’ve noticed with your loved one since their last appointment
-
Ask for written information about your loved one’s test results and treatment plan
-
Don’t be afraid to ask the doctor to slow down or explain things in another way if you don’t understand
-
Make sure you know who the main point of contact is, and who to contact after hours in case of an emergency
Revuforj Routine
Getting into a new routine with Revuforj
Since Revuforj is taken at home 2 times a day (and around the same time each day), it may be helpful to set a dosing routine right from the start to make sure Revuforj is taken as directed.
Here are some tips for setting a Revuforj routine:
Keep Revuforj in a safe place away from children, but somewhere you access every day.
For example: a cabinet where you keep coffee mugs or a medicine cabinet near your toothbrush.
Leave a reminder note in plain sight in the kitchen or set an alarm on your phone.
For example: if the plan is to take Revuforj at 7 AM and 7 PM, set an alarm 5 minutes before each dosing time.
Incorporate Revuforj into other rituals that are already part of your loved one’s day.
For example: first thing in the morning after they brush their teeth or before reading or watching a show in the evening.
Revuforj should be taken on an empty stomach or with a low-fat meal (about 400 calories and contains 25% or less fat).
In the clinical trial, an empty stomach was defined as at least 2 hours after a meal and 1 hour before the next meal. If taking with a low-fat meal, you may choose a go-to low-fat snack or change it up each week for variety.
If your child is taking Revuforj, include an emotional support item or fun ritual with each dose.
Examples: include a favorite stuffy or toy, or dose right before playing a happy song or show.
As a caregiver, use the time after each dose to take a breather and do something simple just for you.
Examples: breathing slowly for a few minutes with your eyes closed, petting your dog or cat, or standing outside for some fresh air.