Resources

Sam, age 10, living with NF1 PN, shown here
with his dad. Sam is a Koselugo patient.

How can I learn more about treatment with Koselugo?

The following resources provide information about neurofibromatosis type 1 (NF1) plexiform neurofibromas (PN), treatment with Koselugo, and support from your Koselugo team. As you review the materials, write down your questions and share them with your child's care team during your next visit.

Basics Brochure for Caregivers

Download this brochure to learn more about NF1 PN and treatment with Koselugo.

Download

Treatment Tracking Journal

Download this booklet to record your child’s treatment, and write down notes about their treatment so you can discuss them with your child’s doctor at their next appointment.

Download

Personalized Support Flyer

Download this guide to learn about the 2 unique support teams available to caregivers through OneSource™.

Download

OneSource Brochure

Download this brochure to learn about the many ways OneSource can support you and your child throughout your child's treatment journey.

Download

Parent Readiness Kit

The Parent Readiness Kit is designed to help families learn more about Koselugo, get ready for starting treatment, and enroll in the OneSource patient support program. To request for these resources to be sent to your home, connect with your PEM.

Request a kit

What are some advocacy organizations for patients with NF1 PN?

The following organizations can help you connect with the NF1 community and learn valuable information about the disease.

The NF Collective combines the work of nonprofits to provide accurate and reliable information to neurofibromatosis (NF) families and healthcare providers.

The mission of the Children's Tumor Foundation is to drive research, expand knowledge, and advance care of the NF community.

Visit the Neurofibromatosis Network website to discover news about treatment and their work toward a neurofibromatosis cure. They provide outreach through education and awareness, while offering hope and support to those affected by NF.

This is not a complete list of advocacy groups and organizations. Connect with your PEM to find additional NF1 PN community resources.

STAY INFORMED ABOUT NF1 PN

To receive the latest updates, tools, and tips about NF1 PN and Koselugo, please provide us with some information about yourself.

important safety information

What are the possible side effects of Koselugo?

Koselugo may cause serious side effects, including:

Heart problems. Koselugo can lower the amount of blood pumped by your heart, which is common and can also be severe. Your healthcare provider will do tests before and during treatment to check how well your heart is working. Tell your healthcare provider right away if you get any of the following signs or symptoms: persistent coughing or wheezing, shortness of breath, swelling of your ankles and feet, tiredness, increased heart rate.
Eye problems. Koselugo can cause eye problems that can lead to blindness. Your healthcare provider will check your vision before and during treatment. Tell your healthcare provider right away if you get any of the following signs or symptoms: blurred vision, loss of vision, dark spots in your vision (floaters), other changes to your vision.
Severe diarrhea. Diarrhea is common with Koselugo and can also be severe. Tell your healthcare provider right away the first time that you get diarrhea during treatment. Your healthcare provider may give you medicine to help control your diarrhea and may tell you to drink more fluids.
Skin rash. Skin rashes are common with Koselugo and can also be severe. Tell your healthcare provider if you get any of the following signs or symptoms: rash that covers a large area of your body, peeling skin, blisters.
Muscle problems (rhabdomyolysis). Muscle problems are common with Koselugo and can also be severe. Treatment with Koselugo may increase the level of a muscle enzyme in your blood called creatine phosphokinase (CPK) and may be a sign of muscle damage. Your healthcare provider should do a blood test to check your muscle enzyme levels of CPK before you start taking Koselugo and during treatment. Tell your healthcare provider right away if you get any of the following signs or symptoms: muscle aches or pain; muscle spasms and weakness; dark, reddish urine.

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

have heart problems.
have eye problems.
have liver problems.
are pregnant or plan to become pregnant. Koselugo can harm your unborn baby. Your healthcare provider should verify if you/your partner are pregnant before beginning treatment. Ensure you/your partner use effective birth control (contraception) during treatment and for 1 week after your last dose if there is possibility pregnancy could occur. Tell your healthcare provider right away if you/your partner think you may be pregnant.
are breastfeeding or plan to breastfeed. It is not known if Koselugo passes into your breast milk. Do not breastfeed during treatment and for 1 week after your last dose. Talk to your healthcare provider about the best way to feed your baby during this time.

Tell your healthcare provider about all the medicines you take, including prescription, over-the-counter medicines, vitamins, or herbal supplements. Especially tell your healthcare provider if you are taking aspirin, blood thinners, or other medicines to treat blood clots. Koselugo contains vitamin E, which may increase risk of bleeding.

What should I avoid while taking Koselugo?

Do not drink grapefruit juice, eat grapefruit, or take supplements with grapefruit or St. John’s Wort during treatment.

Most common side effects include: vomiting, stomach-area pain, nausea, dry skin, muscle and bone pain, feeling of tiredness or lacking energy, fever, sores in your mouth, headache, redness around the fingernails, itching.

These are not all the possible side effects of Koselugo. Call your healthcare provider for medical advice about side effects. Your healthcare provider may change your dose, temporarily stop, or permanently ask you to stop taking Koselugo if you have any of these side effects. You may report side effects to AstraZeneca at 1-800-236-9933 or at https://
us-aereporting.astrazeneca.com or FDA at
1-800-FDA-1088 or www.fda.gov/medwatch.

Indication

What is Koselugo?

Koselugo is a prescription medicine that is used to treat children 2 years of age and older with neurofibromatosis type 1 (NF1) who have plexiform neurofibromas that cannot be completely removed by surgery. It is not known if Koselugo is safe and effective in children under 2 years of age.

Please see Patient Information in the full Prescribing Information for Koselugo (selumetinib).

All families shown in this website have been compensated by Alexion, unless otherwise noted.