Hi my name is Sonja. I was diagnosed and had surgery for OC November of 2019. Non hereditary.
I’m on a clinical trial.
My last chemo was May 2020.
My CA125 was holding at 8 during chemo and months after, but starting Nov, it went up 24, 38 then 48.
CT scan in Nov showed no evidence of disease, but an area on my vaginal cuff that had been looked at previously and deemed non-cancerous grew slightly.
Just had a PET scan yesterday and waiting for results. Pretty scared.
Any thoughts? Thank you.
Hi Sonja, looks like we are following each other .I too had surgery Nov 2019 & last chemo May 2020.Interested as to why you are on a clinical trial ?What stage & grade is your OV.mine was stage 1c grade 3 .I’ve been NED since the op.with ca125 at 8. Not much help to you but have heard from others that ca125 can go up for lots of other reasons eg.infection so don’t panic...I know that’s easy to say, I worry almost every day about something that might be wrong ! Difficult isn’t it but try to feel reassured that whatever is found it will be dealt with straight away but I know , waiting is aweful. Hope you get your results soon & will keep fingers crossed for you🤞Let us know how you get on.big hugs. Dee X
Dee, I just read my portal from the Cancer center. Thank you God. There is no cancer showing up on my body from my brain to skull PET scan. Of course I’m still wondering why my CA 125 is rising, but for now I will consider my prayers answered.
Dee you asked about the clinical trial. It is a stage 3 trial with AstraZeneca. If you go on clinical trials.gov, and put in NCT03737643, you will find the trial I’m on.
I Louise. Can I ask where you are based? I’m London, diagnosed Dec 2019 3c. HGSOV. How do you get on a clinical trial please?
Hi Rose. I live in Tampa, Florida. When I met with my dr. forthe first time, he was aware of a clinical trial that was accepting patients for its 3rd phase study. I am a patient at Moffitt Cancer Center. They are connected to a lot of research and studies. If you go to clinicaltrials.gov, you can find clinical trials that are all over the world.
I am on an astrazenica tral at UCLH Research Facility in Tottenham Court Road. The first step to getting on a trial is to ask your oncologist. If he doesn’t come up with anything then I suggest getting a second opinion. I paid for a consultation at the London Clinic and was sent , within a week, to the Research Facility. I was turned down for the first trial but then got on this one and have been on it for 3 years- fingers crossed for scan in February!
I did ask when first diagnosed but told there wasnt any! I had standard chemo care followed now by Olaparib maintenance 6 months now.What is the trial you are on Neona and 3 years in, what are the meds, if any, you are on?
I have changed hospitals recently and am much happier about that but do wonder if there is anything alongside the current meds that would help. I always asked about Avastin but was always brushed off I felt.
Good luck with the scan and long may your good situation continue.
I have clear cell and am on the Patriot trial. The drug is an ATR inhibitor calked AZD 6738. The trial is closed to new participants but the drug is already in new phase 2 trials. I am on a phase one trial which I wanted as you are guaranteed to get the new drug. I would not have got on this trial if I hadn’t gone for a second opinion .
Hi Sonja, I also had my op late last year, I then finished chemo in May and am on Avastin. My first scan after chemo was clear but my CA125 started going up around the end of July it was doubling every 3 weeks. I had another scan and the beast showed itself this time but in a small way. My Onc said the Avastin is working but not completely so I have to go back on chemo in Feb.. Do you mind me asking which clinical trial you are on. Sue xx
Hi Sue. I’m so very sorry that the OC reared it’s head again. My heart aches for you, me and any of us who live in this unsettling and scary world of OC. My clinical trial is through AstraZeneca. It is a stage 3 trial. If you want to see it, go to clinical trials.gov. The trial number is NCT03737643. I wish you all the best. Sonja
Hi Sue7777. Sorry to hear of recurrence however small. It does seem so very common to us OC so hopefully the next chemo will sort it. Ive heard good things about Avastin but i was declined and given Olaparib as a maintenance (PARP inhibitor). Was there a reason you were given Avastin in particular? I asked for it but was declined without clear explanation. All my best wishes, this first day of new year.
You poor thing, yes we all worry about our C A 125 results mines gone up from 12 to 21.4 not much but l worry why. Mine was in the thousands before my chemo 14 months on feeling a littke anxious myself. Were human and worry that's natural lm waiting for CT scan results again a phone call appointment my stomach so swollen l look pregnant and l eorry
Don’t despair yet it may be small and easily treatable. Inflammation anywhere in the body can cause CA to rise. The way things are at the moment with all these lockdowns etc are making most people depressed so with health problems as well it’s a double whammy. Hold on in there best of luck xx
Hi Sonja, very similar to you, diagnosed Nov 19, surgery March and last chemo May. I’m BRCA 1 and been on Olaparib since June. CA starting rising by about 20 a month from Aug to 80 in Nov, scan showed Ned. Dec blood test CA reduced by 15 and oncologist must see this as promising as she has cancelled Jan scan. I’m starting to think that not enough data available to be able to work out what’s normal CA fluctuation on the newer maintenance therapies. Stay positive and try not to worry, easier said than done I know. Bex x
Thank you Esmerelda. It always helps to hear others have gone down the same road. By the way, I’m sorry you and others have had to experience OC. It sure changes our lives. I wish you healthy days ahead!
Surprising CA125
Raised ca125 very scared 
CA125 Post operation have increased and treatment options
Ca125 gone up again
