Hello Dear Ladies (and gents),
I wrote recently that my ca125 is on the rise. Last test, it went from 15 to 73. I am on a clinical trial (PARP --Veliparib vs Placebo) after front line, and 7 months later, this rise. So pretty sure I am not on it. I called ahead of my appointments this week to say I am pretty sure they will tell me to get a CT scan to confirm what is going on. I told them I wanted to get off the trial because obviously not working, and they said I can't get off the trial till the trial says so (protocol) and they can't say so until they get confirmation from the scan I am recurring. BUT they said the protocol for the trial won't allow me to have the scan so soon after the last one (2 months ago--when NED) and I need to keep taking the pills and wait.
In my mind, the cancer will spread because I am waiting (about 3 more weeks) and the anxiety? Don't even get me started.
I don't know if this is because they believe it may not be a recurrence, or I might be on the real medication or what, but I cannot imagine my doctors telling me to wait three weeks if this is a recurrence. Anyone dealt with this or had to wait for a scan when you really really didn't want to wait (not that I want or like a scan but this is what the medical team is going to be waiting for to treat me!) Another three weeks feels like an eternity.