Rising CA125, feeling low

[Mintybiscuit]

Since finishing chemo a year ago for stage 3 OC my CA125 has remained stable at between 6 and 9. I’ve just found out that it has increased to 23 from 6 a month ago.

I am trying not to panic as I know it still in the normal range and I had a scan in July which was clear. However, I have been feeling quite unwell for a few weeks, low appetite and fatigue, so am fearing the worst.

Not sure how I’ll get through the next month and next blood test. I will have another scan after that if my CA125 doesn’t change or has increased. Feeling very low but don’t want to worry my husband and kids…

[Kjpip]

Hi Minty Biscuit,

So sorry you find yourself in this situation, but as you say it might not be a recurrence. I was in the same position earlier this year, and found it was almost harder thinking about a recurrence than first diagnosis. I think you have a secret place in your head that tells you that you might be that low statistic that doesn't recur, and you feel very let down that it's not the case at all! (When I recurred, I had completed 18 months of olaparib and was feeling a bit smug that everything was going so well!)

I know what you mean about not wanting to worry your family - I told my kids once my CA125 had reached the 70s and treatment was definitely on the cards - but try and confide in somebody as it helps to have someone in the know who can help you through the initial worry.

You'll probably find that - if it is a recurrence - you'll feel much better once it's been confirmed and there's a plan in place. It's that limbo stage that's the worst, when you imagine all sorts of things. I thought a recurrence so soon after my first treatment meant that I would always recur fairly quickly after treatment but lots of ladies on here have had a much longer period of ned after their first recurrence, which was very reassuring.

I'm just nearing the end of treatment now, and my CA125 is down to 9. This treatment (carbo gem) has been much easier than before, far fewer side effects and I haven't lost my hair this time. I've got a scan coming up as well but I'm hopeful that it will show I'm ned again.

Best of luck with it all, and try not to worry too much (easier said than done I know) - if it is a recurrence, you will get through it and you will kick its arse again! Let us know how you get on xx

[Mintybiscuit in reply to Kjpip]

Dear Kjpip, thank you so much for your message. I’m so sorry to hear about your recurrence but glad your nearing the end of treatment and that you’ve found it more tolerable.

I relate so much to having that secret place (hope) in your head. I too feel a sense of failure. I don’t know for sure yet whether it is a recurrence but I feel quite ill again and it feels familiar. I don’t know whether you had symptoms too? I have been feel very very tired and a bit nauseous for a few weeks now. My appetite has gone.

We have booked a family holiday to Thailand for Christmas . We can’t really afford it but felt we needed something to look forward to after the last year and a half. Now I fear it will not happen either because I will be too ill or am having treatment. I feel like I’m letting everyone down.

I wish you well and than you again for your message. It has helped a lot.

Xx

[nordic5]

Hi Minty Biscuit, Im sure You will achieve Thailand holidays on Christmas. Even if its it (and maybe not) You will not start treatment before. Stay calm. Don't push facts. 😎 and buy new swimsuit.

[Mintybiscuit in reply to nordic5]

🤞

[delia2]

Hi. I’m sorry you’re in this situation but tell your team about the holiday and they will try to work around it for you.

[Mintybiscuit]

thanks xx