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Coping with ovarian & peritoneal cancer

Gynecologic Cancers | Last Active: May 29 8:21am | Replies (56)

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Profile picture for keepmoving2 @keepmoving2

@vissdoc Hi! Think I might have answered some of your questions in the Ascites section that you asked a question/answered someone. Curious where your positive lymph nodes are? Other than all the obvious ones that come out during my double mastectomy, I frequently light up like a twinkling little Xmas tree. And then we deal with it. It has come and gone in many places. Do you know for a fact about your liver or is it assumed because you have ascites?
The Fasoldex (Fulvestrant) injections seem to be helping in big picture w/hormone levels. Then we use big time drugs to turn back down.
Is the study you mention the same as a trial? With trials, it not known who is getting what & there are strict protocols to be followed. My docs have always thought I was too “healthy” to pivot to a trial, and there were still “tools” in the toolbox. I love that you still work (as do I) & that you exercise - you go girl!! I do think that you need to be up front about the ascites - hate for it to suddenly turn & might be a lot easier to handle before it does!

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@keepmoving2
Love your spirit! People like you are such an inspiration.
Lymph nodes: contralateral left axilla and left supraclavicular. Then Mayo found infiltration at hepatic dome, biopsies (6 passes) could only confirm breast cancer mutated from originally ER+ to TNBC and highly AR+ and not enough tissue for next generation sequencing. Also have a portal caval node which keeps lighting up. I stopped taking an experimental drug which is an androgen receptor blocker about a week ago which correlates with the rapid onset of ascites. I'm going to restart that tonight. I will let my MD Anderson team know about this. The study drug is Ivonescimab in case you're interested. Thank you for your wisdom.
My home onc is MSK. But I don't want them to involve them if not necessary at this early stage in the game.