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Anyone taking Romvimza for TGCT?

Posted by fancynance @fancynance, Mar 27 8:26am

Hi there, checking to see what others on Romvimza for TGCT are experiencing.

My diffuse tumor in my pelvic-hip area was surgically removed after being on Turalio over 2 years but when it came back last May I started taking 30mg Romvimza twice a week which was new then.

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fancynance | @fancynance | Mar 29 2:59pm

Oh I'm so sorry, it's tenosynovial giant cell tumor. You can have diffuse or localized, often in a joint like the knee. Diffuse, which i have had an 80%chance of recurrence which mine did less than 2 years after surgically removing it.
It can be very hard to get these diagnosed correctly as they are rare and aggressive. I am grateful that there are medications to shrink the tumors as that is a fairly recent development.
I hope this is helpful and thank you for asking.

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