IWILFIN Frequently Asked Questions

How is IWILFIN different from upfront treatment for high-risk neuroblastoma?

IWILFIN is used to reduce the risk of relapse in children and adults with high-risk neuroblastoma who have had at least a partial response to certain prior therapies (such as chemotherapy or stem cell transplant, and immunotherapy). For patients with high-risk neuroblastoma, prescription IWILFIN is considered a maintenance therapy and is taken orally from the convenience of your home.

What is maintenance therapy and why is it important?

The purpose of maintenance therapy is to reduce the risk of relapse or disease progression and keep any residual cancer cells from further growing and proliferating.

Who is IWILFIN for? 

IWILFIN is for adults and children with high-risk neuroblastoma who have completed multiagent, multimodality therapy (such as chemotherapy or stem cell transplant, and immunotherapy) and have achieved at least a partial response.

How does IWILFIN work? 

IWILFIN blocks an enzyme called ornithine decarboxylase, or ODC. ODC helps create polyamines, which are believed to play an important role in the production and growth of neuroblastoma tumors. By blocking ODC activity with IWILFIN, the body is not able to produce as many polyamines. With fewer polyamines available, it’s believed the growth of any residual cancer cells and the formation of new tumors are inhibited, thereby reducing the risk of relapse.

How effective is IWILFIN? 

In an externally controlled study, IWILFIN reduced the risk of relapse in high-risk neuroblastoma patients by 52% when compared to patients not taking IWILFIN.

Is IWILFIN chemotherapy?

IWILFIN is not a type of chemotherapy. It’s a targeted treatment that disrupts the polyamine pathway, which is thought to play an important role in tumor development and growth.

How is IWILFIN administered?

IWILFIN is an oral pill taken 2 times a day, at home or wherever is convenient. For patients who are unable to swallow whole tablets, IWILFIN tablets may be chewed, or crushed and mixed with soft food or liquid.

How is IWILFIN dosed?

Depending on your child’s body surface area (BSA), your doctor will prescribe 1 to 4 IWILFIN tablets to be taken twice a day for up to two years. Because your child’s BSA can fluctuate, dosing adjustments can occur.

Are there any necessary dietary restrictions while taking IWILFIN? 

There are no specific dietary restrictions required while taking IWILFIN.

What are the side effects of IWILFIN? 

The most common side effects of IWILFIN include ear infection; diarrhea; cough; sinus infection; pneumonia; upper respiratory tract infection; pink eye; vomiting; stuffy, runny, itchy nose or sneezing; fever; skin infection; and urinary tract infection.

How are IWILFIN side effects managed?  

If your child experiences a side effect related to IWILFIN treatment, please report it to your doctor. Your doctor might choose to pause or reduce your child’s IWILFIN dose. If treatment is paused, your doctor may recommend restarting IWILFIN at a lower dose and slowly increasing it until your child can tolerate it. Parents should never increase or decrease their child’s dose without speaking to their doctor.

Are there any other names for IWILFIN? 

The scientific name of IWILFIN is eflornithine or difluoromethylornithine, also known as DFMO.

How can I access IWILFIN? 

Once your doctor submits your child’s IWILFIN prescription to IWILFIN Cares™, a team of dedicated specialists will help you understand the process of getting your child’s medication. IWILFIN is not available at your local pharmacy. It’s distributed by a specialty pharmacy that will be responsible for shipping your IWILFIN prescription to your home.

What is IWILFIN Cares? 

IWILFIN Cares is a customer service program designed to help your child start and stay on IWILFIN therapy, as prescribed.

IWILFIN Cares provides support services for insurance coverage determination, financial support eligibility, and coordinated prescription home delivery. IWILFIN Cares also provides refill reminders, 24/7 access to a pharmacist for emergency/urgent matters, and educational resources to support your child’s treatment journey.

Will my insurance cover IWILFIN treatment? 

Coverage for IWILFIN will vary by insurance plan. An IWILFIN Cares Support Specialist can help determine your insurance coverage and confirm your eligibility for any available financial support programs. You can reach an IWILFIN Cares Support Specialist by calling 1-877-IWILFIN (494-5346), Option 1, Monday through Friday (9 AM to 7 PM ET).

Advocacy Groups

US WorldMeds is not responsible for the content on external websites.

The Children’s Neuroblastoma Cancer Foundation (CNCF) is comprised of families just like yours. It was created in 2000 to support the patients and families affected by neuroblastoma and to help find a cure.

Candlelighters Childhood Cancer Family Alliance – founded by families of children with cancer FOR families of children with cancer; to be a light in the darkness. We are there each and every day providing emotional, educational, and practical support to families of children with cancer.

The mission of the End Kids Cancer Foundation is to provide financial support for clinical research and clinical trials that will cure neuroblastoma (NB), with an emphasis on non-toxic treatments. Our narrow focus on neuroblastoma is designed to increase the success of finding a cure.

Research Organizations

US WorldMeds is not responsible for the content on external websites.

The Beat Childhood Cancer Research Consortium comprises over 50 hospitals providing a global network for childhood cancer clinical trials and collaboration efforts.

The Children’s Oncology Group, a clinical trials group supported by the National Cancer Institute, is the largest organization worldwide dedicated solely to childhood and adolescent cancer research.

Established in 2000, NANT is the only international clinical trials consortium focused on developing new treatments and biomarkers for improving outcomes in relapsed/refractory high-risk neuroblastoma.

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