CA125 is 40: 7 months after surgery, 3 months after adjuvant chemo for mucinous OC

[cbulha]

I'm so disappointed as I thought it would decrease now that the tumour has been removed. Before surgery CA125 was 46, after surgery was 33, after first cycle of adjuvant chemo was 25, after second cycle was 40 (I thought it was because I was so poorly during treatment), and now, 3 months after the third and last cycle, when I'm fully recovered from treatment, is still at 40.

My doctor didn't know exactly why, and couldn't give me a logical or scientifical explanation as I gather there isn't any... It's so incredibly frustrating! If it's not so reliable, why do they keep testing our CA125 levels??!! Sorry, I really needed to get this off my chest...

Last CT scan was 3 months ago and it was fine. Doctor ordered another one which I'm doing tomorrow. If all well, I'll only see him in 6 months time.

Thank you for being there and understanding what I'm going through.

[Lind58]

Wishing you the best on your scan. Is there any way you can see him in 3 months time? 6 months seem awfully long

[cbulha in reply to Lind58]

Hi Lind58,

Thanks for replying.

CT scan with contrast went smoothly. I'll find out results next week on Wednesday at the appointment with gyn onc surgeon.

I will ask to see him in 3 months time, as you suggest, especially now when CA125 levels are elevated.

All best,

Claudia

[KiwiGirl04]

Hi, what chemo regimen are you having for Mucinous? Sometimes the tumour marker CA 19-9 is a better indicator for Mucinous OC rather than CA 125.

Also your CA 125 can raise if you have any inflammation happening within your body.

All the best for your CT.

[cbulha in reply to KiwiGirl04]

Hi KiwiGirl04,

Hope you're well.

I did 3 cycles of adjuvant Oxaliplatin (IV) and Capecitabine, which is normally used for GI cancers, due to mucinous nature of cancer (stage 1A G3, but later downgraded to G2).

My marker CA 19-9 was no good, since it was normal when I was diagnosed, as well as CEA. The only marker that was elevated for me was the CA125, at 46.5 at the time of diagnosis in January 2019 (I already had a quickly growing tumour, a mass of 13cm in my left ovary).

I feel very healthy at the moment, no signs of any inflammation, hence my dismay at the high results...

I realised now that I misread the number after the surgery, after the tumour was removed, it actually went up to 336!! And 2 months after that was at 24.8...

My CA125 results so far:

Prior to surgery (good marker to help diagnose): 46.5

After surgery: 336

After 1st cycle of chemo: 24.8

After 2nd cycle of chemo: 40.8

7 months after surgery and 3 months after 3rd and last chemo: 42.8

I'm going to my GP tomorrow to get a referral to do a breast scan as advised by my gyn onc surgeon.

Thank You,

Claudia

Xx

[Katmal-UK]

The CA125 seems to be more reliable for some than others whic

h makes no sense at all! Hopefully for you a higher CA125 is your 'normal'. Best wishes for yr scan. I agree with Lind58, 6 months seems too long given you have just finished treatment. Id be asking for a 3 month appointment. Do let us know how you get on . Best wishes. Kathy xx

[cbulha in reply to Katmal-UK]

Hi Kathy,

Thanks for your message of reassurance.

I really cannot make head or tail of his CA125!! If my "normal" was a higher number, then it's not a good marker for me, so it seems...

I'll try not to think too much about it, but must admit that I'd be so much happier today if my results were under 35, especially after tumour removed and having gone through preventative chemo!

ClauXX

[Lyndy]

I completely understand your worries and frustration but it may be worth holding on to the idea that what they look for with ca125 is a trend upward but yours seems quite stable. My blood test is not very reliable but my scans seem a good indicator. If you feel well then take that as a good sign. Good luck with your scan xx

[cbulha in reply to Lyndy]

Hi Lyndy!

I like your way of thinking, very wise, to take it as a positive sign that I feel physically healthy! I'll focus on that :xx

[Petrolhead]

Hi

I may have said before but usually CA125 does not work for mOC.

CA19-9 and CEA are the tests that you should be having.

Best wishes

Fay

[cbulha in reply to Petrolhead]

Hi Fay!

Hope you're doing well.

In my case of mOC, neither CA19.9 nor CEA seem to work, since both were normal at diagnosis, only CA125 was high, so I thought that was a good indicator for me, but maybe it isn't...

My number now is very close to the number I had when I was diagnosed (46.5 and now 42.8), so I'm just hoping there's another good noncancerous explanation for it! Or my levels are unreliable and have gone bonkers, like me!

Do you mind my asking, what are your levels now? Do you get checked regularly for tumour markers?

Thanks,

Clau:Xx

[Lizchips]

Sorry I don't know what adjuvant chemo is, I had carboplaten, cysplaten and paxitroxil chemotherapy. Sorry , I hope you get proper immediate care❤❤🇺🇸, Liz

[cbulha in reply to Lizchips]

Hi Liz,

Adjuvant chemo is for prevention only, given that I was staged 1A with all apparent evidence of tumour removed (only located in left ovary and no spillage), but because the pathologist gave it a high grade, as it was a fast growing tumour, it was suggested I did 3 cycles of preventative chemotherapy (Oxaliplatin and Capecitabine).

Thanks for your wishes. I'm going to try to have the breast scan as soon as possible (have emailed my GP asking for signed request to do the scan), and on Wednesday I'll find out CT scan result.

Sending good vibes to you accros the Atlantic, from Portugal 💓

Take care,

Claudia:Xx

[Lizchips in reply to cbulha]

Thank you. For explaining, things and treatments are very different in other countries. My friend stage 4 5 ,6 months to live, given paxitroxil and carboplaten, once a week for a year, now cancer free. Best wishes to you. ❤❤Liz

[delia2]

Hi. I agree with others that seeing your oncologist every six months rather than every three is unusual. It’s hard to say what the numbers mean. If your scan is not fine (but I hope it is), maybe you should get a second opinion. Good luck!🌻