ca125

[Hjsr2]

I am about to start chemo carbo/taxol for a first recurrence HGOC. Please could you tell me how quickly Ca125 starts to come down. Is it from the first cycle or is it further into the course? I understand that that is how we judge how well it is working and assuming it comes down i will wait and have a scan at the end. Thank you.

[Gonewith]

Hi, sorry to hear you have to go through this

My ca125 was about 7000 when I started the 1st chemo. I went drasticly down to 4000 after the 1st one. Please bear in mind everyone is different but by 3rd one you know is working. The only thing i didnt do which I think now I know better to cut the hair very short and use the cool cab all through. Even nearly all cases lose the hair but for the growth afterwards it helps. Hope this help xx

[Hjsr2 in reply to Gonewith]

Thank you so much for taking the time to reply Gonewith. That’s really interesting info. What a huge drop in CA125! Mine is around 170 so there won’t be such a drastic drop but i can’t wait to see it going down! I am going to try the Cold Cap but have bought a wig because i still expect to lose hair. Wishing you all the very best. X

[Gonewith in reply to Hjsr2]

So glad yours is not as high. It will drop. Dont worry and try to be relax and positive xx

[FDMD]

Hi there in my experience it can take 1 or 2 cycles to show its actual working. The first ctscan which usually happens after 2nd treatment round can see what is happening and if it's working

[Hjsr2 in reply to FDMD]

Thank you so much for taking the time to reply FDMD. I will have to be patient and try not to panic if i don’t see instant results! Wishing you all the very best. X

[SopSinger]

Of course everyone is different. Mine was 680 before surgery and back to normal by the time I started chemo (which probably meant the surgeon actually did get everything). Still here, nearly 19 years later, never had a recurrence.

[Hjsr2 in reply to SopSinger]

Thank you for your reply SopSinger and it’s wonderful to hear that you've never had a recurrence. I think your point that we are all different is really important to bear in mind. I’m terrible for comparing myself to others. All the very best. X

[Moominalong]

I don’t know how useful it is to compare oneself with others. CA125 markets are particularly variable and personal and may not mean that much anyway. I find that the Gynae nurses are my first port of call for any question however small or large. They always answer or find out more from my oncologist if they can’t answer. The medical team are the experts and they are the ones whose advice we need. Also don’t hesitate to ask for further explanation if you don’t understand something. I always do it by e mail so that I’ve got the written answer for later in case I forget. Be clear and persistent and they’ll answer! Good luck.

[Hjsr2 in reply to Moominalong]

Thank you so much for your advice Moominalong. I have found the nurses and doctors to be lovely and helpful so far and you are right that they are the ones who know my particular situation. This is the first time I have posted on this site and I have received such good advice! Wishing you all the very best. X

[MamaFrajuler]

hi.. yes all the advice seems to be relevant.! I have had 2 recurrences so far, 4 lines of Chemo ( last one completed just before Xmas), and waiting for my hair to grow some more before ditching the hats.. I could not tolerate the cold cap, but that’s me. My CA125 is always low.. after my initial surgery, it was a mere 115 which shows its unique to each person, but dropped to a base line of 8-12 after chemo… further along after recurrence it seems to hold anywhere around 30-40 area. But I know when it doubles… there’s usually trouble..!! But unfortunately even infection can affect it, making it not the most reliable test.! So as everyone says refer to your oncology team. Hope it goes well..!

[Hjsr2]

Thank you so much for taking the time to reply MamaFrajuler. You are so right to say that Ca125 levels are unique to each person, I’m really beginning to see that. I wish you all the very best. x

[ARamage]

My experience was it came down quickly on those two drugs. It wasn’t as fast as with my original treatments but it was quickly. I’m so sorry you are having to go through this again. I keep facing it myself but believe there is hope in all of this.

[Hjsr2 in reply to ARamage]

Thank you very much ARamage. I am hoping to see it come down quickly so I know that it’s working. It’s such a stressful time. Wishing you all the very best. x

[Lind58]

wishing you the best ❤️

[Hjsr2 in reply to Lind58]

Thank you so much Lind58 and wishing you all the very best too. X

[JillAA]

you should see the decrease after your 1st treatment. My CA-125 was 15,279 when diagnosed. After first round of chemo it went down to 2,611, then 153 after the second round. I wish you the best!!!

[Hjsr2 in reply to JillAA]

Thank you so much for your reply JillAA. That is an amazing reduction! I have just had my first round and will be having a blood test in a few days so I’m hoping to see a big reduction myself. Wishing you all the very best. x

[JillAA in reply to Hjsr2]

I will say a prayer for you.

[Claricejourney in reply to JillAA]

Was that caelyx?