Gemcarbo day 8

[18Hilltop]

Hi, I am on my second reoccurrence of HGSS stage 1. I have been told it is incurable despite it being stage 1. From what I understand if your cancer reoccurs it becomes incurable. My cancer has come back in three areas of my abdomen fortunately as I was being monitored monthly it was picked up in my bloods CA125 was at 38 and then a CT scan confirmed three areas In the abdomen . After three rounds of gemcarbo it is now at 12.9. However not once have I been able to get to day 8 of gem. Has anyone else experienced the same on this treatment?

I have a habit of catastrophising and running before I can walk, I am 53 and terrified that as soon as treatment finishes it will come straight back as I can no longer have maintenance treatment as on my first reoccurrence I was put on Olaparib and it hasn’t worked because it came back within 18 months.

I am just looking for some reassurance as I feel quite alone and need to remain as positive as possible.

Thank you ladies in advance for any support and positivity you can share. Xx

[LovemyJackRussell]

It is my belief that Ovarian cancer is never curable - at least that is what I was told at the beginning, and it has been reiterated several times since. We are all in the same boat, hopeful but always with the niggling worry.Take heart at your low CA125. Things are good for you at the moment so try to focus on that. Good luck!

[Bookclublover]

I agree with LovemyJR.

When I was diagnosed HGSOC I was pretty much told it was incurable before I started any treatment. The gynaecologist said it’s only curable if caught very early but even then nothing is certain which is where everyone finds themselves in life.

I agree that it’s the randomness that makes things so uncertain. I met a lady in her 70s at an Ovacome event- diagnosed HGSOC 11 years ago, no recurrences and they still won’t say she’s cured !

Definitely focus on the good stuff and that low CA125. Mine has been climbing for 6 months- 1 year on Niraparib- but I’m feeling really well and enjoying every day.

Good luck ! ❤️

[NewtonEmma1900]

I started my journey in the Autumn of 2021. I have had 3 different chemos and Niraparib. However my last chemo was Spring and early Summer 2024. Fairly quickly afterwards it was discovered that I had new lesions on my liver and the CA 125 was rising . I didn’t want any treatment over the Christmas period as i felt I needed to enjoy time with my family. However inexplicably in January my CA 125 stayed the same and in February it halved (So now 55) Both without any further treatment. How this has happened we don’t know, it might come back but for now I am just enjoying life whilst not on treatment. So try not to give up, live for the day! 🙏 Sending best wishes Katy

[Saintgermain]

Is radiation an option since the recurrence is confined to the abdomen? Ovarian is a beast like playing whack a mole. I'm on my 4th line after being NED for 22 months but mine was a stage 3 I thought stage 1's had a really good cure rate as I have a survivor friend that is 7 years out very lucky but each one of us is different same type different outcome. Its a very lonely journey at times did the carbgem have alot of bad side effects?

[delia2]

Hi. It stinks but if you are still platinum sensitive that’s a plus. I’m on Elahere after three lines of chemo and three years on Olaparib. I hope it becomes more available in the UK. My team keeps saying there are a lot of new treatments in the pipeline., not that treatments are fun!

[Karkam]

Are you having any symptoms? I was diagnosed Stage 4 HGSOC with debulking and a splenectomy due to spread which was not detected on CT. I am so worried about recurrence

[OvacomeSupport Partner My Ovacome Team]

Dear 18Hilltop,

I am sorry to read that you are feeling quite alone, our Support Team are here if you would like to talk anything through. The Supportline is available Monday to Friday 10am - 5pm on 0800 008 7054

Dolores - Ovacome

[Jax68]

Sorry your feeling so alone Hilltop.I'm in pretty much the same boat as you and it's hard going but I've found talking it through really helps. I've had three lots of counselling in the past four years to talk about the shock of getting cancer and how to live with it (after line one), how to deal with the prospect of it coming back (a year after line 1) and dealing with the reality of it being incurable (post line 2). I've found it really helpful to talk these through with someone skilled and who I don't have to consider how it affects them, unlike family and friends. Maybe it might help you feel less alone ? Wishing you well. Jax x