Had my avastin today and results of blood test for CA125 was 29. I know this is within normal range but it was 20 last time. I feel worried but they said there's no need atall to worry. What if next time it's gone over 35.? Would they be concerned or does it have to go up considerably ?
Could it go down again or will it keep rising?
You know that it can rise for so many reasons but that rationale always goes out of the window doesn't it?!
If it rises three times and more than doubles AND you have symptoms they may do anothe scan
You would do best to ask your oncologist what his/her general procedures is in cases like this to have your mind put at rest
Clare xx
Thank you Clare. They did reassure me and said pretty much the same as you. I'm going to not worry. It might go down next time. Worrying won't help me.
How are you now? You've really been through it. Xxxx
I decided that I wanted to try and talk instead of use a,speech app,and I have practiced very hard and since about Sat I can now talk. It's increased a bit every day although I lost the ability when I became tired. Now it's better and I can talk for longer even though I sound foreign! It will take more hard work (by me again)
That's made SUCH a difference to my quality of life and to hubby and me.
Clare xx
Wow. You've done so well. Good on you. You certainly are an inspiration. Xxx
Hi Suzanne
It can also depend on where they do the test. Where mine are being done at the moment they have a new machine. As well as doing it on the old machine they are also doing it on the new machine. If it were not for the fact I always ask for a print out of my bloods I would not know this. Mine give a result for the CA125 of 6 for the old machine and 11 for the new machine. Therefore if I did not know about the new machine I might have thought it had doubled. Interestingly for my CA19-9 the old machine gives 13 and the new machine gives 11. So one test result goes up and the other goes down.
Just thought I would share.
This new machine is being used in the Dudley area.
Fay
Hi Fay.
Thank you for your reply. I don't think it's anything to do with a new machine but I don't know for sure. I think it just goes up and down but I felt panicked.
I hope you are doing ok. Xxx
Hi Fay 
This might be a stupid question but why are you getting tested for CA19-9? I googled it but I'm stumped! I've only heard of CA125, just wondering if that's another test that could be useful too
Hi Biscuitqueen
Not a daft question at all. I was diagnosed with mucinous OC. This acts differently to usual OC and acts like bowel cancer. The CA125 is not usually outside of normal range. Mine was 31 and in the normal range. For mucinous and bowel cancers they use CA19-9 and CEA.
The usual range for CA19-9 is up to 35 and CEA up to 6.5 if a smoker. These only useful for mucinous OC.
Nice to chat
Fay
I was told it had to double twice and then they would scan, or rise and not fall, at each test, they would scan. My first recurrence went from 12 to 47. This recurrence it went from 18 to 27 to 38 to 43 then back to 38. The problem is we all have different patterns, different cell type, or where it presents, versus inflammation or infection. I would say try not to worry just keep a record of the numbers
LA xx
Thank you for your reply Lily Anne.
To start it was 5000. Then went to 3000. Then to 414. After surgery it was 16,18, 19,20 and now 29. They will keep an eye on it. I just worry that it's on it's way back. Silly I know. Must be positive.
Hope you are ok. Xxx
Hi Suzanne, I don't have much to add to the good advice the ladies have given only to say it's hard to be positive all the time, when you do feel scared it helps to just be able to send a post to all our lovely ladies who know how you feel. Even though you know in your heart the answer, I have found that the advice and encouragement a great help so I hope we have helped to reassure you..Best wishes Lorraine xx
Hi Lorraine.
Thank you for your reply. I know I shouldn't worry but with this horrible disease, it's always kind of lurking, ready to pounce. I'm going to try and put it out of my head and just get on with things.
I hope you are ok. Xxx
HI Susanne , you would not be human if you were not worried an d we ladies know more then most what you are going through, so Cheer up and post when ever you need to.
Lorraine xx
Thank you Lorraine. Xxx
I'm on Avastin and my CA has really fluctuated. It went from 15 to 17 to 19 to 22. I know an upward trend is worrying so I panicked but then it dropped to 15 and has been there for weeks. So dont panic. No one was concerned as all in normal range xx
Thank you. It's good to hear about other ladies and their CA125's. I hope you are doing ok. Xx
Hi Suzanne, just to say I have spent so much time worrying about my CA125. It rose on Avastin slowly from 12.7 and was 36 when I finished the course last November. Since then it has been 32, 33 and 32 so came down slightly since finishing Avastin. I just try and concentrate on keeping well as much as I can, keeping a low acid, low sugar diet, eat raw garlic, turmeric, and tons of vegetables, fresh juices, avoid dairy etc all of which cancer doesn't like. I also try and walk in all weather and meditate every day. All those things make me feel I have a bit of control, rightly or wrongly! Try and turn your mind to other things which will help you keep healthy. It is difficult to live with the uncertainty but please don't imagine the worst all the time. All best wishes Sophia xx
My CA never went below 158. It was 8300 at diagnosis. Since first line and op at the end it has been going up every time, from 225 to 339 ...... now 1399. Scan shows not enough to warrant treatment. I feel fine. We will monitor. Try not to get worried about this side of your disease as stress is not helpful. I just wanted to send this with my "number story" to give you some perspective and help ease your worry.... hope it helps.
Netti
Thank you all for your replies and putting my mind at ease. Xx
Hi I was also diagnosed with serous high grade adenocarcinoma and had surgery and omentectomy, finished my treatment March of this year and now only on avastin until October , because of residual disease left in my peritoneal wall. Ca 125 when diagnosed was 341 then it went down to 41 after 3 sessions of chemo carbo/taxol . After treatment it went down to 11 and after 3rd session of avastin its now 6 , so it does varies. Praying that all of us have a very long remission.. Take care.. Xxx
CA125 count risen after 3 months remission
CA125 has risen post surgery. AND Sore and weak and feet and ankles post chemo.
Ca125
