Hello everyone,
I have been on this board for a couple of years now supporting my partner who was diagnosed with Stage 3C high grade serous OC. Unfortunately after a little over a 1 of remission, the cancer has returned and she will need to start chemo again.
I wanted to ask ladies who have had to get 2nd line chemo and what your timeframe was from knowing you had a recurrence to actually starting 2nd line chemo treatment? Was it within a month? Or faster than that?
Thanks!
Steph
Hello… mine was unusual. After 2.5 years a scan appeared to show progression..so I had discussions about chemo but onc wanted to wait for symptoms. 1.5 years later symptoms arrived…but due to pandemic delays I became so ill with pleural effusion that chemo was delayed. I eventually got it, it worked and I am now on a Parp.
The learning I think is that if you are not symptomatic don’t rush but be ready when you are….
Recurrence seems much less precise and more difficult to diagnose xx
Hi Lyndy!
Thanks so much for your reply and advice. I agree, it does seem a bit more complex than when first diagnosed when it was really everywhere and there was no question on the steps that needed to be taken right away. Also at that time she was feeling so bad physically. Right now my partner has few symptoms...though I think we will likely start chemo soon. Hard to decide when is really the 'right' time.
Hi for me the signs and symptoms had been there for about 3 months. They then confirmed recurrence by ct scan in August and I started 2nd line chemo in September. Got good results and started maintenance in January which I am on at the moment.Should add I was given the option of waiting a little linger as symptoms where manageable at that point. However, once I knew the disease was active I just wanted to knock it out asap. and I was able to start after a month.
Hi - sorry to hear about the recurrence. We’ve been through numerous recurrences now and usually treatment starts pretty quickly but. Best of luck with this next phase 🌼
Hi I finished 3rd line treatment in December ‘21. Once blood tests and scans concluded candidate for repeat chemo, it was a transition of 3/4 weeks only, both times. Both 2nd & 3rd line treatments were during the pandemic. Good luck. You know what’s coming, so I found it easier than 1st time round as knew exactly how to combat side effects previously experienced. Be strong, be positive 🦋🌻 x
Thanks for the encouragement Julie! Yes, I think the first time around my partner was much more anxious and afraid. Though some people do report different symptoms from their first and 2nd times. We are getting the same, carbo and taxol again, but this time every week, rather than every 3 weeks. Hope it works again! 🤞
With my first recurrence I found out on 22nd February and started treatment 16th March 2017. With my second, I knew for some months that the OC was active again, but when my oncologist decided to stop Niraparib and my CA125 shot up dramatically the timeframe from her telling me I’d need chemo to actually starting was 21st July 2021 to 17th August, which included all the extra Covid testing needed.
Thanks Numi! Did you ever feel any symptoms for your first and 2nd recurrence? Or were they only picked up on scans?
Hi. Hadn’t a clue with my first recurrence. I’d had a couple of bouts of unexplained sickness which I just thought was a bug, so finding out, the first time I’d got to a 3 month review (I’d been having monthly reviews after my initial treatment the previous year), that my CA125 had shot up to 200 from 50, was a real bombshell! The second time round, though I had no symptoms whatsoever I could see it coming, so coped better. I was on Niraparib for over 3 years and was having 4-weekly blood tests so I could see my CA125 creeping up slowly, and when it reached 35, a scan confirmed the cancer was active again, though not dramatically. Niraparib kept the progression slow for several months after that but once my CA125 reached 150 my oncologist decided I would need chemo and stopped the PARP inhibitor. By the time, a month later, that I started chemo my CA125 was nearly 400. How did your partner find out hers was back?
Hey Numi, for my partner, she had a rising CA 125 for about 5 months actually. She had a PET scan when it was around 45, but nothing showed up on the scan. It gradually rose to 172 and that is when the PET scan lit up with recurrences in a few areas and a small amount of ascites. Still small recurrences, but since it is not one area it is difficult for surgery. Chemo seems the best route at this point. She still doesn't have any significant symptoms...maybe more gas, but she is still going to the toilet regularly and is not bloated. She is due to start chemo on April 19th...really hope it kills all of it off and she can have a longer remission...
I was told I would need more chemo a bit later on around beginning of July last year; by late August, was told by a different oncologist to start it then. I didn't because I had no symptoms, and my CA 125, whilst raised, wasn't shooting upwards at a rate of knots, it was more just creeping upwards slowly and was still less than half what it had been when I had chemo before. I just waited till end of November and then decided to go for it, even though I still didn't really have any symptoms but more because I wanted the chemo finished by spring time, so I started it in early December and finished about 12 days ago.
If I'd had symptoms, I'd have had the chemo sooner, obviously...
Miriam
Hi Stuee. They told me I recurred 6 month after 1st line chemo. And despite my CA was only 19, they said my Niraparib doesn't work for me and they can see tiny nots in 3 places . I've started new treatment Caelyx 3 weeks after that. I had symptoms like nagging pains, aches, pins and needles etc. At the moment 4 weeks after I started new chemo, i got Covid positive with severe viral symptoms. So they posed my chemo for after Easter . We be OK ! )))
Yes! Wishing we will all be OK too 
Thanks for the support organicinna! We are starting chemo too right after Easter. Hoping you sail through your treatment ❤️
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