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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.
March 19
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Desmoid Tumor Causes: 6 Risk Factors Explained Read Article...
A MyDesmoidTumorTeam Member

Thanks so much for the info. We will ask her doctor about that when she goes back.

March 20
A MyDesmoidTumorTeam Member

Diet is important. Stay away from junk and fast food also sugary and fake food like margarine and trans fats. Use butter and olive oil. Fresh when available. Frozen when not. Canned or processed if you must. Good luck

March 22
A MyDesmoidTumorTeam Member

The newest one that I know of is Ogsiveo FDA approved in November of 2023. I'm on it since 12/28/2023. Is it working? Not sure. There are other approved drugs available. Check out this site and www.dtrf.org for more information

Home - The Desmoid Tumor Research Foundation
Home - The Desmoid Tumor Research Foundation
March 19
MyDesmoidTumorTeam

Are there any new medications for a desmoid tumor in the jaw, especially since your daughter's tumor grew during her last pregnancy?

Yes, there is a new medication specifically approved for desmoid tumors. In November 2023, the FDA approved nirogacestat (Ogsiveo) as the first medication specifically for desmoid tumors. This Show Full Answer

Are there any new medications for a desmoid tumor in the jaw, especially since your daughter's tumor grew during her last pregnancy?

Yes, there is a new medication specifically approved for desmoid tumors. In November 2023, the FDA approved nirogacestat (Ogsiveo) as the first medication specifically for desmoid tumors. This targeted therapy blocks a protein called gamma-secretase that desmoid tumor cells use to grow and divide.

Other medication options that may be used include:
* Tyrosine kinase inhibitors (TKIs) like imatinib (Gleevec), pazopanib (Votrient), and sorafenib (Nexavar) - these are used off-label
* Chemotherapy, which can help shrink or control tumor growth
* Radiation therapy for tumors that don't respond to other treatments

Regarding pregnancy-related growth, desmoid tumors can be influenced by hormones like estrogen, which may explain why your daughter's tumor grew during pregnancy. For future pregnancies, active surveillance is usually the preferred approach since many systemic medications aren't appropriate during pregnancy due to potential harm to the fetus.

It's important for your daughter to work closely with both her obstetrics team and desmoid tumor specialists to determine the best treatment plan, especially if she's considering future pregnancies or is currently breastfeeding.

March 19

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Kennett, MO