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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 💭
San Francisco, CA

Living with a desmoid tumor often means adapting to uncertainty.
What routines, tools, or support systems help you feel more empowered in your day-to-day life? Share your strategies and tips with the community! 💬

May 20, 2025
 · 
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A MyDesmoidTumorTeam Member

Put your trust in God and if he wants to sin, so be it. God will carry you through. Remember the story Foot Prints. Pray and be at peace.

June 25, 2025
A MyDesmoidTumorTeam Member

Nothing. Desmoid tumors are a strange animal with a life of their own and
are totally out of control. I have tried seven different types of chemo.
The tumor just laughed at all except possibly Ogsiveo and the verdict still
is not totally clear on this one. These monsters are known for waxing and
waning on their own. I only have two words for anyone that has them - good
luck. There is no control.

May 21, 2025
A MyDesmoidTumorTeam Member

I'm still very new and I have very limited support. I usually don't depend on anybody and even this situation has led my husband to ask for divorce a few times during this process. We are in a new area and I have my husband and my children here that's it. I don't go hang out with any friends or anything. I work and I have teaching groups but I have tried to not lean on my students for support. This is changing my life in ways I don't even know yet...

June 25, 2025

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