CA125 of 25,000+: any positive stories out there??

[Jaffacake5]

Has anyone had an initial level of 25,000+? Want to hear your stories of progress with getting it down.

[GoldenGourd]

Hi there. My CA 125 was over 8000 initially. Of the myriad things said about ca125 one thing I have learned is that it is not the actual number but the direction of travel over a prolonged period. Some people seem more sensitive in readings and so have higher figures and some have lower figures so smaller changes are more meaningful for them. I'd advise to focus on how you are feeling, to try relaxation in any way that helps e.g. Bath, massage, walk in the woods, relaxation tape, lying warm and comfy with candle and nice music, reading what you love etc. It's a long term game this.

I hope this helps

Netti

[Jaffacake5 in reply to GoldenGourd]

Thanks. Because Oncologist seemed taken aback by the figure when he told us, and when i asked the oncology nurse she said she hadnt seen anyone at over 25,000 before, was trying to gauge how unusual this is. Were taking it as just one part of the bigger picture, but even so the number is obviously startling.

[Mrs_Atko in reply to Jaffacake5]

Hi there - have they offered you a repeat test just to check the numbers? I concur with Netti about the importance being the general direction over time being the most important factor than the number, but i'd may be tempted to ask for a repeat test just to sure. Jemima x

[Jaffacake5 in reply to Mrs_Atko]

Thx. She starts chemo next week and is having her CA125 done again just before that starts. Oncologist has asked for an exact level this time as usually anything over 25,000 isnt usually measured, it just comes back as 25,000?

[Mrs_Atko in reply to Jaffacake5]

Sounds like they are on top of it then. Hope all goes well with the treatment. Keep us posted xx

[Yoshbosh]

Hi Jaffacake,

From what I've noticed, the number is almost irrelevant. Some women have very low CA125 and yet have an advanced stage of OC, whilst others have a very high number and are in no worse a position. I was diagnosed as stage 3, but my CA125 was 'only' 489... That didn't matter to me - I still had stage 3 cancer!

I hope whoever you are supporting responds well to chemo and you see that number tumble 😊

Yosh x

[Jaffacake5]

Guess its so different to most of the levels Ive seen people mention on here, wanted to put some context around it. This is all new to me. Thanks.

[Lost4Words]

Hi, mine was 29,000+ at the start of my last lot of chemo and after 5 cycles had dropped to 254. It pretty much halved after each cycle. Try not to get hung up on the numbers, whilst it can be a good indicator for some it can also go up and down for so many reasons.

[Hidden]

I agree with Lost for words, dont get hung up on numbers you will drive yourself crazy. I assume the question is for someone you know and not yourself. So I would drop it for now, give your friend as much support as she may need.. Help with shopping housework, school run etc if this applies.

[Jaffacake5 in reply to Hidden]

Thanks. Yes I am helping in all the practical ways that I can of course, including seeking information from those whove been where she is now because she was really thrown when the oncologist told us how high it was. Difficult to make sense of the medical stuff without any context isnt it. Sorry in advance if Im asking things on here that are obvious to those whove been dealing with it longer, just trying to feel our way around this at the moment as diagnosis is very recent and its hard to know where to begin.