Treatment Options

Every child with pLGG has a different treatment experience

Lily, lives with pLGG.
Lives for dancing.

What’s available to treat pLGG?

Each child’s journey is unique. Depending on the location of the tumor, surgery is usually the first treatment choice to remove as much of the tumor as possible without creating any additional damage to the brain. After removing as much of the tumor as possible, the outlook is generally very good. However, further treatment may still be required.

If surgery does not remove the tumor entirely, additional surgeries may be needed, in addition to other treatments such as radiation and/or chemotherapy.

Treatment and/or approach	Purpose	Information to note
Observation	Watch the tumor to see if it changes in size; can be referred to as “watch and wait”	No treatment is used
Surgery	Remove as much tumor as possible without causing additional damage to the brain	May not be an option for everyone based on tumor location
Chemotherapy	Attacks tumor cells in the body	Not as targeted, so it may also attack healthy cells
Radiation	Kills tumor cells or slows their growth by damaging their DNA	May be avoided due to its side effects
Targeted therapy = type of treatment that targets and attacks tumor cells with certain characteristics	Targets cancer-causing proteins involved in the growth of tumor cells	Targeted therapy = type of treatment that targets and attacks tumor cells with certain characteristics include BRAF inhibitor = type of targeted therapy that works on the BRAF protein to inhibit or slow the growth of tumor cells and MEK inhibitor = a type of targeted therapy that works on the MEK protein to inhibit or slow the growth of tumor cells; limited available options for those with pLGG and long-term effects unknown

Most options available to treat pLGG, including chemotherapies and certain Targeted therapy = type of treatment that targets and attacks tumor cells with certain characteristics, are only approved by the FDA for use in adults

Many of these options have been studied for effectiveness and safety in children with pLGG but have not been FDA approved specifically for children with pLGG. There is a need to develop and gain FDA approval = has been tested in clinical trials and approved by the US Food and Drug Administration for medicines specifically for those with pLGG.

pLGG, and all that it means for you and your loved ones, can represent change for your family. Most people living with pLGG, but not all, require surgery. Most people living with pLGG will also require chemotherapy, but not all. While surgery, chemotherapy, or radiation may be effective treatment options, it is important to know that they can all have a lifelong impact on your child’s quality of life.

Speak with your healthcare team about the benefits and risks of each treatment option. Share which aspects of treatment may be challenging so they understand the specific impacts of treatments on your child and family.

Discover other pLGG experiences from people like you

Explore Their Stories

How might Genomic testing = test to identify a BRAF alteration and what type it is inform Targeted therapy = type of treatment that targets and attacks tumor cells with certain characteristics selection?

The majority of patients with pLGG have a BRAF = a gene that, when altered, may be a driver of pLGG growth Alteration = a type of genomic change (mutation or fusion) in the BRAF gene that may contribute to cancer development in their tumor. A BRAF = a gene that, when altered, may be a driver of pLGG growth Alteration = a type of genomic change (mutation or fusion) in the BRAF gene that may contribute to cancer development will fall into 1 of 2 categories: (1) a BRAF fusion = 1 of the 2 most common types of BRAF alterations in pLGG (ie, KIAA1549-BRAF fusion) or (2) a BRAF point mutation = 1 of the 2 most common types of BRAF alterations in pLGG (ie, BRAF V600E).

Targeted therapy = type of treatment that targets and attacks tumor cells with certain characteristics are treatments that attack tumor cells based on their unique characteristics. Some Targeted therapy = type of treatment that targets and attacks tumor cells with certain characteristics block the action of certain proteins or other molecules involved in tumor cell growth.

Targeted therapy = type of treatment that targets and attacks tumor cells with certain characteristics

Fusions do not get inhibited with current BRAF inhibitors while point mutation does

Fusions do not get inhibited with current BRAF inhibitors while point mutation does

Currently available BRAF inhibitor = type of targeted therapy that works on the BRAF protein to inhibit or slow the growth of tumor cells are only effective against certain BRAF point mutation = 1 of the 2 most common types of BRAF alterations in pLGG (ie, BRAF V600E)

There are no FDA approval = has been tested in clinical trials and approved by the US Food and Drug Administration BRAF inhibitor = type of targeted therapy that works on the BRAF protein to inhibit or slow the growth of tumor cells that can target both types of BRAF = a gene that, when altered, may be a driver of pLGG growth Alteration = a type of genomic change (mutation or fusion) in the BRAF gene that may contribute to cancer development (fusion or mutation). Research is underway on developing new treatments for pLGG that target both BRAF fusion = 1 of the 2 most common types of BRAF alterations in pLGG (ie, KIAA1549-BRAF fusion) and BRAF point mutation = 1 of the 2 most common types of BRAF alterations in pLGG (ie, BRAF V600E).

An important goal is to develop medicine specifically designed to target any BRAF alteration that may be causing your child’s tumor

An important goal is to develop medicine specifically designed to target any BRAF alteration that may be causing your child’s tumor

For explanations of terms used throughout the site, please see the glossary.

Speak with your child’s healthcare provider for information about ongoing Targeted therapy = type of treatment that targets and attacks tumor cells with certain characteristics research.

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