Thanks so much for the info. We will ask her doctor about that when she goes back.
March 20
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
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