Holmes, lives with pLGG, and Clare, Holmes' mom
Side effect management
Confidence comes from knowing what to expect
“Starting treatment for your child is overwhelming and terrifying. You must stay strong, but also informed about the side effects and how you can manage them. Finding ways to help your child could make treatment just a bit easier.”
—Reeba, Myla's mom
—Reeba, Myla's mom
Hear from caregivers about how they worked with their care teams to manage side effects for their children taking OJEMDA
Children with pLGG may have growth-related conditions. Treatments for childhood cancer (like chemotherapy, radiation, extended steroid use, or targeted treatment) can also affect growth.
How common is it?
An initial analysis conducted in June 2023 showed that 15% of children 18 years or younger had slowed growth in the clinical trial. In May 2024, additional data was collected and studied. These results are not in the OJEMDA Prescribing Information.
In the updated data analysis,
46%
(61 out of 133) of children 18 years or younger had slowed growth
- Children who participated in the FIREFLY-1 clinical study are being monitored for long-term observation, and further analysis may become available.
When does growth typically slow in children taking OJEMDA?
Every child is different, and depending on their age (and other factors), growth changes may be noticed at varying times, or sometimes not at all. You can monitor your child’s growth at home, and check in with your child’s healthcare team to see how their growth is tracking.
Is slowed growth reversible?
Improvement in growth was seen as early as 3 months after stopping OJEMDA in the clinical trial.
- This data is based on the results of the updated analysis in May 2024 and is also not included in the OJEMDA Prescribing Information
Most children were catching up in their growth after pausing or stopping treatment with OJEMDA
Genetics, tumor location, nutrition, and previous medicines all influence a child’s individual growth. This is why it’s important to talk to your child’s care team about expectations for growth before beginning OJEMDA.
How common are they?
Skin reactions are common side effects in lots of cancer treatments, including OJEMDA. Some of the common skin reactions for OJEMDA were rash, acne, dry skin, and sensitivity to sunlight.
In the clinical trial of OJEMDA,
77%
(105 out of 137) of children had rash
The majority of children experienced mild to moderate rash. 12% of children (16 out of 137) had serious rash.
14%
(19 out of 137) of children had sensitivity to sunlight
When did the children in the clinical trial first notice rash?
In the clinical trial for OJEMDA, children experienced rash as early as 2 weeks after taking the first dose and up to 16 months after.
How can rash, dry skin, acne, or sun sensitivity be managed?
Here are a few tips to help make your child more comfortable. Be sure to work with your child’s care team to come up with the right plan to manage side effects.
- Use unscented creams and gentle soaps; avoid products with alcohol or retinoids
- Wash clothing with gentle (hypoallergenic) laundry detergent
- Apply unscented, thick moisturizers (creams over lotions) to dry skin right after bathing
- Wear sunscreen when outside, reapply as needed
- For sensitivity to sunlight, when dressing, cover legs, arms, and face with sun-protective clothing. Use sunglasses and brimmed hats to cover the head and neck
- Take short, warm baths or showers
- Consider home remedies such as oatmeal and bleach baths (Download A guide to learn about side effects of OJEMDA for more details)
- Talk to your child’s doctor about steroids for dry skin
How common is hair color change?
Certain cancer treatments, especially targeted therapies, commonly can lead to changes in hair color. Eyelashes, eyebrows, and body hair may change, too.
In the clinical trial of OJEMDA,
76%
(104 out of 137) of children had hair color changes
Hair color changes consisted of lightening, graying, or turning white.
When do children usually first notice hair color change?
Hair color changes may appear soon after treatment, but timing varies among children based on factors such as how fast their hair grows.
How can hair color change be managed?
Each person experiences hair color changes differently. Depending on your child’s age, these changes may be unwanted.
Older children, like pre-teens and teenagers, may find color changes to be a burden, so it could be helpful to manage expectations through open and supportive conversations.
“My mom asked if I wanted to dye my hair, but I said no! This is who I am, and I love who I am”
—Gabby, lives with pLGG
Fatigue (tiredness)
- Allow more time for naps and reduce activity to conserve your child’s energy
- Help your child drink lots of fluids and eat well
- Encourage exercising when possible
Vomiting or nausea
- Feed your child frequent small snacks (empty stomachs can make nausea worse)
- Encourage your child to sip liquids slowly throughout the day
Headache
- Use a cold washcloth and place it on your child’s forehead or back of their neck
- Help your child rest in a darkened room
Viral or upper respiratory tract infection
- Call your child’s care team if your child is showing signs of a viral infection, or an upper respiratory infection, like a cold or bronchitis. Your child’s doctor can help choose the best treatment plan
Fever
- Contact your child’s care team right away if your child gets a fever
- Give your child plenty of liquids and place a cold cloth on their forehead
Constipation
- Give your child warm fluids often
- Feed your child high-fiber foods
