I am stage 3c survivor
My ca125 has been really low since chemo and surgery 2016
Just had check
Up Tuesday and it’s gone up to 80
I’ve also been getting a non painful, more like a flutter in my lower pelvis
Has anyone experienced this feeling
I ha e got ct scan next Thursday but obviously worried
When I recurred, I too had something going on deep in my pelvis, though at times I did experience some pain. For me my CA 125 started to rise about 6 months before they could find something definitive on a CT scan. I had a second debunking surgery followed by 6 cycles of carbo/gemzar. And I’m still here to tell you about it. My last chemo was in November 2008. As of 7 days ago I am a 14 year survivor of Stage 3 c high grade epithelial/serous ovarian cancer.
God forbid if you are recurring we are here for you.
Best wishes - Gwen
Gwen that is AMAZING! ❤️❤️❤️
I agree amazing and good for those of us newer to this to hear! I am three years this month, stage 4, doing well!
Thank you ! That’s very inspiring . So happy for you
I have just discovered this forum which is a fantastic platform to talk to people of the same
Enjoy your life and thank you 💕💕💕❤️
Gwen that is incredible & very inspiring. I too had that exact same diagnosis with two surgeries followed by chemo, two years apart. The CA125 is very helpful to catch the recurrence early though no one wants a recurrence. I always have the thought in the back of mind of when the next recurrence might happen.
So Gwen thank you for inspiring us all. One question: Are you taking any targeting type drug or immunotherapy drug?
I’m not currently taking any kind of targeted or immunotherapy. When I got to my second remission I did participate in a phase I clinical trial back in the summer of 2009 for a vaccine they hoped would help keep women who had had a recurrence in remission longer once they reached NED (no evidence of disease) again. Having said that there is no statistical data to suggest that is why I am still here.
When I reached my 10 year mark I asked my oncologist why I was still here and others weren’t - knowing it was a rhetorical question. There are so many factors that may have played into me having the good fortune that I have had. And as a sample of one there isn’t any way to translate that to the larger population just based in my personal experience. But there are researchers who are studying long term survivors as a group to see if they can detect some commonality that contribute to their survival.
Hi Gwen,
May I ask if you have ever had your abdomen fill with ascetic fluid? Last Feb. they drained 1 1/4 gal off my abdomen. Statistics say after that prognosis is dim, but here I am a year later. Thanks
I did have ascites when I was first diagnosed as well as fluid around my left lung.
I really tried not to focus on statistics when I was in treatment. Just between my mother’s and my experiences it was very apparent that individual experiences don’t necessarily mimic the statistics. Remember statistics are made up of the experiences of lot of people. So within that population of people you will find lots of individual experiences that don’t look like the average.
Awesome gives me hope !! Are you in any maintenance drugs??
I am not. When I got to my first remission back in 2006 I had an extra 12 cycles of taxol. That was one of the early drug options for consolidation/maintenance.
Thx for replying hugs
I’m having the same issue right now but my CT scan from last November was good but the CA 125 was rising this is a problem we all worry about, I know what you’re speaking of that rumbling in fluttering in your stomach and lower abdomen ,We just have to trust in God, and stay strong until our next CT and blood test. We have to pray all the time for ourselves and for each other this is a very mysterious disease. Minnow, We Must Keep On Keeping On ❤️
Here I Go Again😔
CA125 scared 
Stage 3c OC, ca125 rising slowly 
Still in shock from diagnosis to surgery. 
