Looking for advice about recurrence 1

nadiaC

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! 

Sylviequebecbc

It's interesting how different oncologist proceed with treatment. How high is your CA125? Mine was last increased to 461 (in December)no new blood test planned, my last PET/CT showed lesions still there, "some less active, some more,  with one lesion increased in size..." and for now, follow up in 3 months, back on Anastrozole, "but call us if you have symptoms"...

nadiaC

hi @Sylviequebecbc. Thank you for responding to my comment. Yes, different oncologists do seem to have different approaches, which is why I reached out to the OVDialog community for insight and shared experiences. My CA is 850 as of last week, but CT is relatively clear. No visible lesions. My oncologist thinks I have 'extensive peritoneal disease.' I am curious, do you have any symptoms? Also, I see Quebec in your name, and wanted to let you know that I'm in Montreal, being treated at the MUHC. 

Sylviequebecbc

Allo NadiaC
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? 

nadiaC

Salut @Sylviequebecbc
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. 

Bonne journée

Sylviequebecbc

Oh ya! Fatigue....Bonne chance demain!