IDH-mutant glioma is a type of brain tumor that happens when a gene called IDH (isocitrate dehydrogenase) changes in a way that affects how brain cells grow. Detecting an IDH mutation in the tumor cells from your biopsy or surgery leads to the diagnosis of IDH-mutant astrocytoma or oligodendroglioma.
What you should know ABOUT IDH-MUTANT GLIOMA
About 20% of gliomas have IDH mutations. Another common type of glioma, called glioblastoma, has no IDH mutation.
The prognosis is usually better for astrocytoma and oligodendroglioma than for glioma without an IDH mutation.
IDH-mutant gliomas tend to continually grow and should be regularly checked with an MRI.
Identifying mutations in your glioma helps you and your doctor decide the best treatment options for you.
You should ask your healthcare provider if your tumor was tested for all possible IDH mutations. If it has been a long time since your last resection or biopsy, ask if your tumor can be retested.
IF YOU FIND OUT YOU HAVE AN IDH MUTATION, YOU MAY BE eligible for targeted treatment with VORANIGO®.
Understanding THE STEPS YOUR HEALTHCARE TEAM WILL TAKE TO DIAGNOSE YOUR GLIOMA
MRI
A brain scan, or digital image, which is used to check if the doctor can see anything that is not normal, like a tumor.
Biopsy
A procedure performed by a neurosurgeon where a sample of tissue is taken from the tumor for testing and diagnosis. This sample can be collected as part of surgery to remove as much of the tumor as possible, called a resection. Resection can be the first step in treatment.
Mutations tested
The tumor sample is tested for mutations.
The tumor is diagnosed as IDH-mutant glioma if there is an IDH1 or IDH2 gene mutation.
This means that your glioma is an astrocytoma or oligodendroglioma
Other mutations and changes identified in cells can provide additional information for a more precise diagnosis
Less common IDH mutations can only be detected by a different test called NGS which may require your doctor to send your tumor tissue to another lab for testing
There is a lot of information about glioma, which can be overwhelming.
My Glioma Guide CAN HELP ANSWER SOME OF YOUR QUESTIONS.
IDH-mutant gliomas continue to grow even after surgery. This means that the glioma can come back even if you remove most of it.
Choosing the appropriate treatment for you and your glioma is an important decision to make with your healthcare provider (HCP). If you learn that you have an IDH mutation, targeted treatment with VORANIGO may be an option.
Active observation (“watch-and-wait”)
An option for people who don't want to start any treatment. Regular monitoring of the tumor with MRI scans is done to monitor for any changes in the tumor size.
Current scans are compared with previous scans to confirm whether the tumor remains stable. If the tumor changes, you and your doctor can discuss the next step.
Chemotherapy and/or radiotherapy
Treatments that can be used alone or together.
Chemotherapy: A treatment that stops cancer cells from growing by killing them or preventing them from dividing.
Radiotherapy: A treatment that uses high-energy radiation to kill cancer cells and shrink tumors.
Targeted treatment
A type of therapy designed to focus on specific mutations in your glioma cells. Targeted treatment doesn't affect healthy cells as much as other treatments.
There is currently only one targeted treatment that has been FDA-approved and specifically designed for IDH-mutant glioma—VORANIGO.
A procedure to reduce the size of your tumor or remove as much as possible depending on location within your brain.
When performed as part of diagnosis, surgery can be the first step in treatment because it reduces your tumor size. Additional surgery may be necessary if your tumor changes or grows.
Consider getting a referral to a specialized brain tumor center,
where doctors from multiple specialties can come together to discuss which treatment option is best for you. Ask if the treatment team has a neuro-oncologist, a doctor with special training to take care of patients with brain tumors.
The American Brain Tumor Association (ABTA) provides a trusted resource for help finding a specialized brain tumor treatment center near you. To search for brain tumor programs, visit ABTA’s Brain Tumor Center Finder.
LEARN FROM PEOPLE WITH IDH-MUTANT ASTROCYTOMA AND OLIGODENDROGLIOMA who have shared their stories and treatment journeys.
VORANIGO (40 mg tablets) is a prescription medicine used to treat adults and children 12 years of age and older with certain types of brain tumors called astrocytoma or oligodendroglioma with an isocitrate dehydrogenase-1 (IDH1) or isocitrate dehydrogenase-2 (IDH2) mutation, following surgery. Your healthcare provider will perform a test to make sure that VORANIGO is right for you. It is not known if VORANIGO is safe and effective in children under 12 years of age.
What are the possible side effects of VORANIGO?
VORANIGO may cause serious side effects, including:
Liver problems. Changes in liver function blood tests may happen during treatment with VORANIGO and can be serious. Your healthcare provider will do blood tests to check your liver function before and during treatment with VORANIGO. Tell your healthcare provider right away if you develop any of the following signs and symptoms of liver problems:
yellowing of your skin or the white part of your eyes (jaundice)
dark tea-colored urine
loss of appetite
pain on the upper right side of your stomach area
feeling very tired or weak
What is VORANIGO?
VORANIGO (40 mg tablets) is a prescription medicine used to treat adults and children 12 years of age and older with certain types of brain tumors called astrocytoma or oligodendroglioma with an isocitrate dehydrogenase-1 (IDH1) or isocitrate dehydrogenase-2 (IDH2) mutation, following surgery. Your healthcare provider will perform a test to make sure that VORANIGO is right for you. It is not known if VORANIGO is safe and effective in children under 12 years of age.
What are the possible side effects of VORANIGO?
VORANIGO may cause serious side effects, including:
Liver problems. Changes in liver function blood tests may happen during treatment with VORANIGO and can be serious. Your healthcare provider will do blood tests to check your liver function before and during treatment with VORANIGO. Tell your healthcare provider right away if you develop any of the following signs and symptoms of liver problems:
yellowing of your skin or the white part of your eyes (jaundice)
dark tea-colored urine
loss of appetite
pain on the upper right side of your stomach area
feeling very tired or weak
The most common side effects of VORANIGO include:
increased liver enzyme levels in the blood
lack of energy, tiredness
headache
COVID-19
muscle aches or stiffness
diarrhea
nausea
seizure
Your healthcare provider may change your dose, temporarily stop, or permanently stop treatment with VORANIGO if you have certain side effects.
VORANIGO may affect fertility in females and males, which may affect the ability to have children. Talk to your healthcare provider if this is a concern for you.
These are not all of the possible side effects of VORANIGO.
Before taking VORANIGO, tell your healthcare provider about all of your medical conditions, including if you:
have liver problems
have kidney problems or are on dialysis
smoke tobacco
are pregnant or plan to become pregnant. VORANIGO can harm your unborn baby
Females who are able to become pregnant:
Your healthcare provider will do a pregnancy test before you start treatment with VORANIGO
You should use effective nonhormonal birth control during treatment with VORANIGO and for 3 months after the last dose. VORANIGO may affect how hormonal contraceptives (birth control) work and cause them to not work well. Talk to your healthcare provider about birth control methods that may be right for you during treatment with VORANIGO
Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with VORANIGO
Males with female partners who are able to become pregnant:
You should use effective birth control during treatment with VORANIGO and for 3 months after the last dose
Tell your healthcare provider right away if your partner becomes pregnant or thinks she may be pregnant during your treatment with VORANIGO
Tell your healthcare provider if you are breastfeeding or plan to breastfeed. It is not known if VORANIGO passes into breast milk. Do not breastfeed during treatment with VORANIGO and for 2 months after the last dose.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. VORANIGO may affect the way other medicines work, and other medicines may affect how VORANIGO works.
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