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Real members of MyDesmoidTumorTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyDesmoidTumorTeam Member asked a question 💭
Long Island, NY
November 5, 2025
 · 
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MyDesmoidTumorTeam

What would you like to know about Ogsiveo?

Ogsiveo (nirogacestat) is the first FDA-approved medication specifically for treating desmoid tumors. It was approved in November 2023 for adults with progressing desmoid tumors who need systemic treatment, especially when surgery isn't a good option.

How It Works:

Ogsiveo is a Show Full Answer

What would you like to know about Ogsiveo?

Ogsiveo (nirogacestat) is the first FDA-approved medication specifically for treating desmoid tumors. It was approved in November 2023 for adults with progressing desmoid tumors who need systemic treatment, especially when surgery isn't a good option.

How It Works:

Ogsiveo is a targeted therapy that blocks an enzyme called gamma-secretase. This enzyme activates a protein called Notch, which helps desmoid tumor cells grow and divide. By blocking this process, Ogsiveo can help control tumor growth.

How It's Taken:

It's an oral medication (pill) typically taken twice daily.

What Studies Show:

Clinical trials demonstrated that nirogacestat improved progression-free survival, meaning it helped people live longer without their disease getting worse or causing death.

Is there something specific about Ogsiveo you'd like to know more about, such as side effects, effectiveness, or how it compares to other treatments?

November 5, 2025
A MyDesmoidTumorTeam Member

It says everywhere that this medication is for adults but doctors have been discussing to put my granddaughter (5 years old) on it. Her tumors are all in her right forearm.

November 9, 2025