Hello ladies. I'm new to this page. I'm very sorry we all have this. I'm from New Zealand. STAGE 3C Serous High Grade. Been in niraparib 3 months, ca125 risen go 59. I'm really devastated. Will stay on it, review with oncologist after scan and next bloods. I'm feeling physically great. Had chemo, surgery, chemo, unfortunately very small bits of residual cancer in upper abdomen. Thoughts/advice please.
Kindest regards xxx
Welcome OCFNZ to a club nobody wanted to join but will find solice being in it. You left behind a beautiful country. One I still need to visit. Big hugs, F x
Good Morning
I'm so sorry your in this position. I was diagnosed with clear cell stage 3a last spring. After the initial chemotherapy I was put on Niraparib. I wasn't on it many weeks before my CA125 started to rise. I too was devastated and know exactly how you feel. I think the thing is although we're diagnosed at stage 3 we just hope and pray that we're going to be a lucky one that gets through the net and it never touches again or at the very least a very long remission.
At the moment you know your plan your staying where you are for now. My advice would be to exercise, eat the best you can and lots of relaxation such as meditations. Keep an eye out for drug trials if they are of any interest to you, make a note of them so you can discuss them with your oncologist.
I'm now back on Taxol but I don't see me staying there, it's just for now. Small steps with all of this is key.
Sending you lots of love
xxx
Dear OC fighter, like me I also 3c HGSOC, chemo, surgery, chemo. Finished treatment June 2022 on Niraparib. CA125 was down to 3. But over the next 4 months it crept up. By January 2023 I was seriously ill again and spent 9 nights in hospital. Now I’m on weekly paclitaxol which is keeping it at bay. I’m able to enjoy life and do some work. Not sure what comes next. There’s plenty of options I believe. I too was disappointed the PARPs didn’t work for me. Make the best of the time you have when you are feeling well.
It’s a rollercoaster ride that none of us want. Best of luck xx
Hi there,I'm sorry Niraparib isn't doing it for you. I was on it for about 5 months (after the same pathway as you plus second surgery) and so disappointed when the numbers climbed again. I went on a trial which didn't work either and now recently finished Carbo and Gemcitabine and feeling really well.
So maybe you can try a trial next, which help lots of people, or more chemo. Avastin could be another option if you haven't had it yet?
Wishing all the best.
Martine xx
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