Family Planning & Fertility Issues: Considerations When Using Vorasidenib

“I always say to patients that I’m treating a patient in front of me. I’m not treating an imaging report or a pathology report,” she says.

Family planning is an important discussion to have, Dr. Kurz says, and glioma patients should feel comfortable knowing it’s one their doctors have all the time.

Glioma Treatment & Pregnancy

Grade 2 gliomas are one of the few cancers that often appear in people in their 20s, 30s, and early 40s, which is, unfortunately, the exact window when many people are thinking about or planning to have children.

Vorasidenib (brand name Voranigo) is an oral medication designed specifically to target low-grade gliomas that have mutations in certain genes. These mutations (in the IDH1 or IDH2 genes) are found in the majority of low-grade gliomas and are thought to drive tumor growth by disrupting normal cellular metabolism.

Vorasidenib has changed the game for patients with this type of glioma — but unfortunately, it cannot be taken while a patient is pregnant.

Animal studies showed embryo-fetal toxicity and malformations. And because IDH enzymes play a role in normal cellular development, the risk to a fetus is considered significant.

“Having a family is such a paramount decision and for many people that is really crucial … and for them, they may want to wait starting treatment because they want to have that baby,” Dr. Kurz explains.

“I think this is one area where we really have to make a shared decision together with the patient. And in those discussions, we try to be as open and honest as possible and we may have to change plans to honor the patient’s wishes.”

While on vorasidenib and for three months after stopping, patients should not become pregnant or breastfeed. It’s important to use effective birth control during this time period.

Family Planning Conversations

Some people have slow-growing tumors and absolutely do have time to preserve fertility or attempt pregnancy before treatment — but that’s not the case for everyone. It depends entirely on MRI patterns, symptoms, and tumor behavior. That’s why it’s so important to discuss the risks of waiting carefully with your doctor.

“I have several patients who have chosen not be on vorasidenib, who I thought would be really great candidates for it. But they have not chosen that pathway because they wanted to have more children,” Dr. Kathryn Nevel, neuro-oncologist at Indiana University, told SurvivorNet in a previous conversation.

Like glioma treatment, family planning is not a one-size-fits-all approach.

As Dr. Nevel said, delaying vorasidenib may be okay for some people. However, for others, it could allow the tumor to grow or progress into a more aggressive state. A good neuro-oncologist will not make this decision for you, but they’ll show you the risks honestly and help you weigh them.

Fertility Preservation Options

There are ways to preserve your ability to have biological children before treatment starts.

For women, the main approaches include:

• Egg freezing (this usually takes about 10-14 days)
• Embryo freezing (same timeline)
• Ovarian tissue freezing (used less commonly, but an option when time is very limited)

For men, sperm banking is an option and can typically be done quickly.

Many people choose fertility preservation because it gives them future options and can help ease anxiety in the face of uncertainty.

While many patients feel pressured to freeze eggs or sperm the moment they’re diagnosed, it’s important to understand that being on vorasidenib alone doesn’t automatically mean you’ll lose your fertility. In fact, one of the advantages of this medication (compared with chemotherapy or radiation), is that it can generally be stopped safely if you and your doctor decide it’s the right time to try for a pregnancy.

There’s no strong evidence that vorasidenib permanently harms fertility, so some people choose not to freeze anything and simply plan to pause the drug later. That said, fertility preservation is often recommended because it gives you a safety net.

Long-Term Fertility Impacts

Currently, there’s no evidence in humans that vorasidenib impairs fertility long-term. It doesn’t appear to affect menstrual cycles and there’s no data suggesting early menopause. There is no known effect on sperm quality either.

However, while doctors don’t know if the drug harms fertility at this point, they also can’t promise that it doesn’t. There simply isn’t long-term data yet.

Paying For Fertility Treatment

Fertility preservation can be expensive. However, many people with cancer are eligible for different types of financial assistance — this might include discounted medications, specialized grants, nonprofit support, and additional insurance coverage.

Patients are often shocked by how much support exists. No one should assume cost makes this impossible until they speak to a social worker or fertility coordinator.

Questions To Ask Your Doctor

• Can I delay treatment to preserve fertility?
• Has my tumor grown quickly or slowly based on my MRIs?
• Do you think I can safely try to conceive now?
• How long would I have to wait after stopping vorasidenib before trying?
• If my partner is the one on vorasidenib, what does that mean for us?

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