Ca125 creeping again..

[Laz66]

Hello, Finished second round chemo for first recurrence in Feb, 2 surgeries, stoma. Now on Niraparib for 3 weeks, 100 mg initially due to blood counts. Doing ok on this so far. I have an inflammatory arthritis that came on very suddeny after final chemo, Rheumatology think chemo related. On steroids for a month to try and “ reset” system. Some improvement . My ca 125 is creeping up though... ct scan 3 weeks ago shows NED . Hoping its the inflammation from arthritis but still fairly twitched. Went up 10 points last month then repeat this week is up another 4 points to take me to 34. I know its at the top of normal range. It was 12 in Feb after chemo. Any words of wisdom please? Thank you x

[Lyndy]

Hi Laz66, I had inflammatory arthritis before OC and it seems to mean that my ‘normal’ ca125 is a bit on the high side. So I am stable on Olaparib but whereas most people seem to be stable under 10, I have never been lower than 17. I suspect that I have background inflammation which causes this. So don’t panic, hopefully it’s just the arthritis causing a blip xx

[Laz66 in reply to Lyndy]

Thank you Lyndy. I will keep my everythings crossed and keep you posted x

[Davonian]

Hi ya, I am sorry I have no words of wisdom but can totally relate to your post and what you are going through. You are at the same place in treatment as myself. I also finished 2nd round chemo, carbo/caelyx in December 2021, have a stoma (emergency op June 2021). Have been on 100mg Niraparib for 3/4 months, starting on 200mg. then reduced to 100mg. Have had to stop a couple of times due to low platelets. I will have completed a full 28 day Niraparib cycle next week and this is the furthest I've got. My CA125 is also creeping up. It was 17 on completion of the chemo and is now at 38, jumping 17 points from the last test. No CT scan until July and really just want to keep my head in the sand until then. As you said inflammation can cause the CA125 to rise. Ovacome is a really good place to talk to someone about your concerns also I'm sure some of the ladies on here will have more information for you.

[Laz66 in reply to Davonian]

Very similar then ...totally get the head in sand. I think I may just ask to stop having this tested for a few months as its driving me potty. How were you on this chemo and how are you feeling on Niraparib? I was dreading taking it due to side effects but ok so far. With that and the steroids I feel a bit woolly and insomnia is naff but am back swimming and spinning and getting away a lot in caravan so cant complain x

[Lucylockpocket]

It is hard to watch the CA125 creep up. After my first lot of chemo in 2020 mine went down to 7!! But sadly, after a few months, rocketed to 400+ ( my cancer is platinum resistant apparently, but they can only find out by trying) Following a CT scan there was a small tumour on my liver too so I had 6 months of a different chemo and was stable at around 50 for 2 months. Also developed osteoporosis and whilst having blood screening, the consultant was very thorough ,my CA 125 was over 200 , after that it went to 500 then 700+ , by Jan 1400 and in Feb over 3000. I have some changes in my lymph glands in a couple of places and am now having weekly, reduced doses of paclitaxel. After my first couple of weeks CA125 was over 4000 but now , I’m on cycle 3 and it’s down to 525 . It’s going down more slowly but it’s positive. Just keep speaking to your specialist nurse if you are anxious. It’s different for everyone so your worries are important.

[Laz66 in reply to Lucylockpocket]

Thank you. Yes its so very individual. Such a worry. Can see how some dont get it done often. Hoping you do well 🤞🤞x

[Lucylockpocket in reply to Laz66]

Thank you Laz66. Say positive 😊