Good Morning,
Does anyone here know if CA125 is raised in stable disease or whether it only rises if cancer is active?
Surely if cancer is present it would cause it to rise but not necessarily mean it was growing?
Does anyone on here have a raised CA125 but not on treatment and fairly well even tho they have cancer present?
Sorry for the many questions, just find it all a bit confusing
Lisa x
Hi yes. My ca125 has been rising very slowly since I finished chemo almost 1yr ago. I have had 3 CT scans 2 of which has shown very very minimal growth. I have been on Letrezole for the last 6 months and last scan was considered stable though cancer still presen. I keep fairly well and really only tired at night which is not a bad thing. I have a little discomfort sometimes but on the whole think I am doing not to badly compared with lots of ladies on this site. Hope this helps.
Thank you for replying. May I ask whether your cancer is fast or slow growing and how many cycles of chemo you have had? Also how quickly your CA125 went up and by how much?
I suppose the faster it goes up the quicker it is growing??? Really not sure how it works and very confusing when you hear that lots of drs don't even check CA125 levels but wait for symptoms , makes me think it can't be that important?
Lisa x
I was actually told at the beginning it was fairly fast growing but now , I do not know but will ask in dec when I see ONC. I finished first line last October, was on the icon 8 trial and had 18 rounds of weekly chemo with a couple of rescheduled weeks due to low blood counts. and my CA 125 started to rise straight away so am, I believe, platinum resistant. Not sure if it's a good indicator for me as it was 246 when diagnosed and is now around 260 as far as I am aware. as already stated, I have very few symptoms. Let me know how things are for you. X
Well that is a very debatable issue, you can get false negative and false positive readings in the CA 125. As well as this if the blood sample is not kept in proper conditions in the lab, it may affect your readings. On recurrence, my 125 was nothing to worry about so my consultant didnt think I was in trouble. I had pain on my rear end and ended up with a Rheumatologist who ordered mri and this showed OC was back with a vengeance. So this is why doctors dont use it much exceot for diagnosis and also monitoring the movement on treatment. It is a more reliable tool for this. Some oncs do adopt a wait and watch policy if the patients isnt in any great discomfort or if they are clinically well.
Hi Suzuki, thanks for that very interesting reply.
It's difficult to know what to think isn't it? Should we immediately think the worse if it goes up ( as as you have said it didn't in your case and yet it was back) or should we wait for a scan? But then too many scans aren't good are they? I wonder how much your levels go up and down on a weekly basis?
I can see why some oncs won't do it as it certainly causes the stress levels to sky rocket! But then I worry that during a wait and see period the cancer could be running riot and be even harder to control
Lisa x
I developed a recurrence just 8 months following completion of Carbo taxol. My CA125 came back at 41 which prompted a scan that confirmed the recurrence. The CA125 test is a reliable indicator for me, mine was 1608 on diagnosis.
I am on watch and wait with regular CT scan every 3 months. Although there is progression, it appears to be slow at present and at last consultation was described by my oncologist as grumbling.
She advised me when recurrence was diagnosed not to ask for my CA125 results as you can become hung up on them and they will only be going one way with a recurrence, up! As a result some 13 months on since being told I have a recurrence, I couldn't tell you my CA125 result. I feel well, apart from leg pains which I developed as a side effect from chemo and it never went away.
My oncologist always tells me to contact them if I develop any new symptoms or if any niggles worsen and they will scan me sooner. I have got used to being on watch and wait and am enjoying this freedom from Hospital appointments at present.
I know I will eventually have to get chemo, and it will be Carbo taxol again. I'm not looking forward to that due to the side effects first time around, but for the moment I am happy to continue as is. I understand that the longer I get between each chemo the better. I hope to get to 2 years from completion of 1st line chemo (Dec 15) before I have to start again. Longer would be nice lol.
Ann x
Hi Lisa
My experience, and what I've been told by professionals is that there are lots of things that can affect the CA125 but they look for trends as the presence of the protein over a sustained period of time indicates my ovarian cancer is on the move.
Generally while my CA125 was low or just going up quite slowly I had manageable disease but by the time it was rising swiftly (not the case for everyone) I had other symptoms so we knew it was time to restart chemotherapy.
It is important but only as just one of the indicators oncologists watch out for.
xx Annie
Hi Annie, thank you for replying . This is my first CA125 since finishing chemo around 8 wks ago, it was 14.3 then and is now 62. My Onc was trying to play it down saying it wasn't that high( she knows what a panicker I am) but I'm sure it shouldn't have shot up that high so soon after finishing chemo.
The thing is I feel so well and have no symptoms ( altho I'm imagining all sorts now).
I know I will have to wait and see what the scan shows, I am just clinging to the hope that there could be another reason for it going up so soon. I'd read somewhere that cancer cells dying can cause an inflammatory response in your body that could raise your marker but I don't know how true that is and that's why I asked whether CA125 is present if you have inactive cancer ( but still have an identified cancer) or whether it only rises if cancer is on the move.
Thanks again
All the best
Lisa xx
Hi there my ca125 was 15 when I finished chemo last May, it is now 64 and my onc has said this is a good indicator for me, I know this isn't for everyone, I am now on 4 weekly Caelyx and my cancer is slow burner.
Wishing you well. There are lots of support on this sight and I'm sure you will get lots of answers to your questions. Good luck x
My ca 125 is rising slowly but I have just had a PET scan which has showed a better picture than before with no new disease or spreading and cell activity down. I have low grade ovarian cancer and I am only on tamoxifen.
Thank you for your replies. I think I was just hoping that a raised CA125 so soon after finishing chemo wouldn't necessarily mean it was back.
Looks like I should be preparing myself for bad news
thanks again xx
My CA125 was 7 after treatment, and been no higher than 15 until May when it went to 47. My consultant said it was nothing to worry about but sent me for a CT which was negative. In July it was 102 and CT showed a pelvic tumour. So for me I guess it must be a marker, even though it was on 34 at diagnosis.
I'm not sure it is bad news, it can be a result of other things including CKD.
Hope it's just a blip, and goes down again, it such a worry and that worry never seems to go away.
Best of luck, fingers crossed for you
LA xx
Hi Lily Anne,
Thank you for your reply .
I'm trying not to let my fears run away with me but it is very hard.
I only finished chemo 8 wks ago and the thought that it may be back already is very scary.
I hope you have your scan soon so that you know what the plan of action is and I wish you all the best
Thanks again for replying
Lisa xx
Hi Lisa,
My CA125 kept rising so they did a CT Scan and they didn't find any new cancer. They did say it could be from some sort of infection going on in my body. I went to the doctors on Friday to see where my number was at and it was back down to 17. Thank god no new cancer, probably just infection.
It went from 35 to 150 while I was going on my 6th round of chemo. I didn't have any chemo for about a month while they figured out what was going on. They decided to change my chemo because they weren't sure if I was platinum resistant. They checked my CA125 before they started the new chemo and it had already gone down to 33 without any chemo for a month. They checked my numbers again after my first round of the new chemo and it went down to 17. We are doing two more rounds to be on the safe side and hopefully in remission. Hopefully everything will be ok with your scan. It's hard not to worry and always something that's on our minds. Good Luck.
Rising CA125- confused !! 
CA125 rising
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