Hi everyone! I have HGS 3C and finished chemo in Oct 2020. In Dec my CA 125 started increasing, and it’s still going up. I had a scan two weeks ago which didn’t show anything. In fact a lesion I had is gone, ascites are gone. My oncologist said that because of my rising CA that I have peritoneal disease but suggested that we don’t do any more scans unless I really want one. I am in a clinical trial getting Niraparib and immunotherapy, and she suggested we stay the course and continue with the trial for as
long as possible before switching to Caelyx. Have any of you been in a similar position of rising CA with nothing visible on a CT? How did you proceed? Thanks!
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I am from Montreal, but have lived in BC since 1990! I live in a small town in the East Kootenay, and my oncologist and team are in Calgary.
I do not have overt symptoms, never really had. Even when my CT showed ascites and multiple lesions in my abdomen, before my HIPEC surgery and 1st chemo, I didn't have symptoms...that is why I am nervous to wait until I have symptoms before anything is done, maybe it would be too late and difficult to manage.
Are you experiencing symptoms?
I am having some symptoms. Abdominal discomfort, changed in bowel movements, fatigue. It’s unclear to me If these are related to the surgery last June or my current medication (niraparib, immunotherapy, metformin). I am meeting my oncologist tomorrow and plan to ask her about HIPEC. I wish I had been offered this at the time of surgery.