Hello lovely ladies,
This is my six monthly update.
I have just received the results of my CA125 blood test and it is at 7. It's usually at 8 or 9 so definitely going in the right direction. It's now been 11 years since I finished my chemo and I've been lucky enough to get no recurrence.
For those that don't know, I was diagnosed stage 3C in July 2013.
I wish the same for everyone. (Not the diagnosis but the luck)
Love to all Zena xx
Hi There, its a while since I have been on here. My latest CA125 is 11 just over two years on from my surgery. Long may it continue x
Hi, 11 is good. Long may it last. xx
congratulations! Did you have any Parib or maintenance drugs after chemo? How often do you have blood tests or scans? My CA125 has been 11 or 12 for about 3 years I wonder if mine will ever drop like yours?
Hi JustKBO. No, I didn't have any maintenance drugs after chemo. I didn't even know there was a maintenance drug at the time. I have blood tests every 6 months and breast screening every year due to the BRCA gene.
I think the CA125 is different for everyone. At the time of diagnosis I didn't know how high the number could go to or what mine was then. It was only after I finished treatment that I followed it. I don't think I knew enough about cancer to know what questions to ask. I relied on the professionals giving me the information they thought I needed. It's so different these days.
It sounds like you're doing really well too so long may that last. xx
Hi Zena,
Fantastic news, thank you for sharing; so uplifting and offers many newly diagnosed people hope.
Best wishes
Denise xxxxxx
Hi Denise, thanks. I hope it helps others see that there is hope and a lot of us do get there. I've always thought that the lucky ones often leave here and we don't get to hear there happy stories but there are loads of us out here.
All the best Zena xxx
Fantastic news again! It gives us all hope for the future X
Always so good to hear you doing so well Zena! Long may it continue x
Thank you xx
thankyou for sharing and long may that low figure continue x
thank you for your encouraging update Zena, long may low C125 continue.
Great news,gives us all hope xx
wonderful wonderful news Zena. Thank you.
That’s fantastic Zena , I have been 4 years now since I was diagnosed stage 3 Ovarian cancer. I have just come off my PARP treatment. My CA125 has gone from 7 to 11 but has stayed at a steady 11 for the last couple of years. I hope I am like you and long may it continue. It is always good to share your good news as it is encouraging for so many others. Well done you and thank you for your advice you have given me along my journey. Xx
Hi, I'm so pleased you're doing well and a steady CA125. Four years is good. I don't know about you but it was the 5 year clear that I was aiming for and you're well on your way to that.
I wish you all the very best for the future and keep letting us know how you're getting on. xxx
Hi Zena - I am so pleased to hear you’re still doing so well. I finished treatment in 2022, but still worry about recurrence - so it is always so reassuring to hear from you. I hope it continues like that forever for you and you will have a little treat to celebrate too! Love Shan xxx
Thanks Shan, I'll have a little toast of Prosecco but to be honest I forget all about it these days until the appointments come through. I've been so lucky and I wish it was the same for everyone. I'm glad you're doing well too. The longer it lasts the better chance of not having a recurrence. xxx
That’s great news, Zena! So glad to hear that you’re doing so well. It’s so encouraging for others who are at an earlier place on their OC journey. Long may it continue xx
Thank you. I hope you're doing well. xx
That’s fantastic news, so encouraging 😊
Congratulations Zena that's great news to hear. I'm Brca gene also, mine is Braca 1. I was stage 4 on diagnosis in 2021 and doing well, had a reoccurrence March 2023 but responded well TG. I'm surprised that you weren't offered a maintenance drug due to the Gene, I'm on Olaparib and Avastin infusions at the moment. But I'm delighted that you are doing so well and it's reassuring to hear from a another Brca gener! X
Hi Cinemalover, I'm so pleased you are doing so well. That's fantastic news.
When I finished my chemo no-one knew I had the BRCA gene. It was only when I joined this group and read about it that I asked for a test. This was quite a few months, maybe a couple of years after all my treatment.
It did make me worry a bit about what else I didn't know about but luckily everything has been okay. e.g. maintenance. No-one mentioned it so I assumed it wasn't available in 2013.
All the very best to you. Zena xx
Thanks for your reply Zena that's good you asked to be tested and that you are doing so well..as they said if it ain't brokedont fix it! Continued good health is wished for you. Xx
This is great news and really encouraging. I'm also stage 3C diagnosed in Aug 22 and been NED since, CA125 always around 8-10. Also on nirapirib 100mg for maintenance. Mx
That’s soo uplifting to hear Zena. I had my bloods done yesterday ready for 4 monthly check up on Friday, last time CA125 was 6.2 so hoping for the same again.
Tell me does the anxiety get any better the more time passes or do you feel anxious before your appointment each time?
Thanks for sharing & long may It continue xx Jen
Hi Jen, thanks for your reply. For me, I don't think about it anymore and assume all will be well with my blood tests. I must admit I don't even worry about the results anymore and assume all will be well. To start with I always assumed it would be bad news and I'd have a recurrence but I think that is a normal reaction. I hope that's the same for everyone. I've never been much of a worrier about things I can't do anything about. I worry about silly little things though. lol.
It's good news that your CA125 is 6.2. Long may it remain that low.
Best wishes, Zena xx
Thank you Zena.
I’m only 2.5 years in so hopefully I’ll get to that place one day. I’m fine day to day it’s just checkup time that the anxiety sets in. As soon as I’m told my CA125 then I relax ☺️ xx Jen
Hi Zena, thank you for posting this ❤️
It’s certainly given me hope as I anxiously wait for my CA125 result each month. Mine was 4200 + at diagnosis in Feb 24 and it is now 10 after chemotherapy, debulking and now on immunotherapy (Olaparib). But it’s hard not to obsess about reoccurrence.
Sending all the lovely ladies on here good luck 🤞🏻 and healing thoughts x
Yay! Great news!
Brilliant news. X
love such positive posts … gives us all a lot of hope
hi Zena is there anything else you can share about your diagnosis or treatment. I’m 3c but am struggling to get clear of the disease after 7 chemo my ca125 went up. I’m fearing the worst so would love more detail on your experience
Hi, There's not too much I can tell you as I was ignorant of it all at the time. I had the operation to remove everything. The tumour was entwined with my bowel so it was a long operation but I had a fantastic surgeon who managed to save my bowel. I have a lot of problems there though since. I went on to have 18 weekly sessions of chemo. Paclitaxel and Carboplatin weekly. I used the cold cap which worked for the hair on my head but lost all my other hair. I also had some blood transfusions but that's about it.
When chemo finished I had a scan and was seen at the hospital every few months for 5 years and now I have 6 monthly blood tests and yearly breast screening.
I didn't know there was such a thing as BRCA or maintenance drugs. I read on here about BRCA and asked for a test which showed I carry the gene. Luckily, no-one else in my family does.
Stage 3C can be frightening but we have ladies on here with stage 4 and are still living a fantastic live. There's always hope.
I wish you all the best. Zena xx
Really brilliant news ! x
Brilliant news x
Wonderful news ZenaJ. I had a reoccurrence after 10 years and following chemo, carbo/paclotaxil. I've been on naraparib for 7 months. Unfortunately my CA125 has been rising and is now over 1,000. PET scan in November was clear and I'm awaiting results of a second scan. Heaven knows what's going on.
Thank you.
I do hope you hear some good news. I know CA125's do vary a lot.
Please let me know how you get on. xx
Hi Zena, glad to hear that you are doing so well. I was diagnosed stage 3 and then stage 4 after surgery. It spread to my intestines and abdominal wall. Anyway, this was in Oct. of 2019. I was on Niraparib for three years, which gave me side effects. Low blood counts and UTIs . Took some breaks off and on. I am just starting on 6 month checkups. My CA125 holds between 14 through 18. I believe this could be from arthritis and some inflammation. No worries. I feel blessed that I am doing well at age 78. I hope that you continue well in your journey. 🙏😊 Donna
Hi Donna, you are doing so well. I think UTIs come with the territory. It's difficult to know what's due to the cancer treatment and what's due to old age. We're just lucky to still be around to get these things.
All we can do is take each day as it comes and enjoy our lives as much as possible with our hobbies, holidays and family.
I wish you all the very best. Zena xx
Hello piano player ,
You are going well and all the best with your treatment . Does your ca125 fluctuate between 14 and 18 ? I’m just wondering if it’s normal for most peoples to change through t recovery ? Many thanks 😀
Hi, I think the CA125 can also point to some inflammation that is going on. Arthritis can be an example. Thanks for your message , wishing you the best!
Brilliant news Zena, thank you for sharing xx
Thank you so much Zena for your positive post, it’s so inspiring to hear success stories, it gives us all such hope xxx
Hello! that’s brilliant news! Mine was 7 and gone to 10 my nurse said this is nothing to worry about but I do worry and wonder if anyone else has slight fluctuations and is this normal ? X
Hi Flapjack, I think fluctuation is normal. Mine isn't the same every time I'm tested. I wouldn't worry too much yet. xx
Thanks Zena , I have just seen a lady was 7 then stayed at a steady 11 for years! These group chats are amazing and has helped me not to worry to much and live life! 😀Xx
Understanding CA125 - does anyone?
CA125 test - how effective is it?
Ca125 risen a little. 
What is your CA125 level?
My daughter's ca125 is 21
