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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.
July 5, 2025
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A MyDesmoidTumorTeam Member

no.

August 4, 2025
A MyDesmoidTumorTeam Member

Thank you so much for that info! I feel like because of this platform I can go to the specialist with all the questions and information I need. I am very grateful to you and everyone else for the knowledge and support! I hope you have a wonderful day!

July 30, 2025
A MyDesmoidTumorTeam Member

Yes, surgery caused the paralysis. The tumor encompassed the nerves, veins, and artery. When they removed the tumor, they had to take those also and then they tried to repair the damage. I also have less than 50 percent blood flow in that leg. Then I grew two new tumors that we treated with Tamoxifen and sulindac. The medications stabilized the tumors and I have been stable since 2012ish.

July 29, 2025
A MyDesmoidTumorTeam Member

Was the surgery what caused your paralysis? And are you on medication or did they just naturally stabilize?

July 23, 2025
A MyDesmoidTumorTeam Member

Thank you so much for this information, I will check out your Facebook page! Thank you again!

July 23, 2025

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