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Mesonephric adenocarcinoma...anyone?
Gynecologic Cancers | Last Active: May 19 10:11am | Replies (30)Comment receiving replies
@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.
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@kirlizee
Thanks for your reply. I am just now beginning to realize the roller coaster feelings. I think I was naive, perhaps wishfully so. Emotionally not great but trying to move forward. The woman at Jo’s Trust must have been caught so very early with no cell migration. I keep hearing there are so few of us but then my doctors say they have seen quite a few and feel many are misdiagnosed. I noticed MD Anderson has a registry for mesonephric like cancers and I wish another centre would start one for mesonephric as I think if people started being accumulated it may help with future research and funding. Just a thought. Thanks again for your info and sending positive thoughts to you.