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Mesonephric adenocarcinoma...anyone?
Gynecologic Cancers | Last Active: May 19 10:11am | Replies (30)Comment receiving replies
@kirlizee
Sorry also wanted to ask about person at Jo’s Trust who is still living after 14 years… is she chatting with you? I’m just wondering about what she had done due to length of time still living. Does she still chat on forums? Also my doctor has said at cancer centre where I am being treated they have seen quite a few women with this and they suspect more women world wide have it but get misdiagnosed with cell type. So I am thinking maybe not as rare as initially thought.
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@mariannie2 Jo’s trust shut down abruptly last year so I don't have a way to find her but she never had a recurrence which would certainly be a better spot to be in. Only had a username and no email.
MSK didn’t have a specific reason for why the avutometinib/defactinib stopped working but there were indeed promising results for a year+ for many in the trial. Of the cervical patients, it had a roughly 1 in 3 response. The trial was designed more for ovarian patients but accepted any mesonephric gyn cancers with measurable disease.
The rollercoaster of new treatment about every 3-4 months is ultimately what gets to me. You just feel like you're blasting through options trying to buy time.