C125 will it come down?

I went to see my Oncologist last friday and he said that he would like my C125 number to come down some more [it is 24] which I thought was really good, he says that their are women that the Chemo does not work, their are women that it works but not as well, and their are women that Chemo worked really well, I would have thought having a C125 at 24 was really good, I still have three more C125 blood tests so hopefully they will bring the C125 down, considering before my oporation my C125 was over 10.000!! although he did say that the C125 is not the only thing we look at, does he not think that maybe my natural level? I dont know what my number was before I got OC.

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  • Hi Sarah,

    All I know is that the level for concern is 35 (above that), and when mine was down to 16 during chemo the Dr I saw said that his was probably higher! (Do men have ca125?) Anyway, I'm sure 24 is good, and if you are still having treatment, it will probably go down further.

    Best wishes,

    Isadora.

  • Hi Isadora, thanks for the info, yes lets hope they come down further since I do have three more C125 blood tests, I here that your number's can come to a stand stil some times through your Chemo, towards the last few, did your Dr. say your Chemo had eradicated your OC on your very last vist, before you started to have your three month checks? or do you have to wait 5 years before they can say your OC is never coming back?

  • Hi Sarah,

    If you are having 3 more chemo treatments, your CA125 levels will probably go lower.

    To be clear: your Oncologist will never say that your cancer has been eradicated: we all have cancer (or potential cancer cells) circulating in our systems - it's a matter of whether they turn into tumours or not. When you've had a cancer, you are at greater risk of it recurring, and some cancers recur more often. What they will say is that you are 'in remission' - hopefully at the end of your chemo. That will be because your blood tests, examinations, and scan show no sign of disease. However, the less good news is that the disease is likely still to be there in microscopic amounts, which might turn to tumours. Whether they do or not depends upon why you got the cancer in the first place, and whether that has been addressed.

    What the health service are really bad at doing is giving information about how to avoid recurrence through lifestyle. For that, I recommend amazon.co.uk/Anticancer-New.... It is important to support your immune system after cancer, because that is your defence mechanism. Of course, lifestyle might not have anything to do with why you got cancer, but if you have a strong immune system, you have a better chance of avoiding recurrence, or dealing with it if it happens.

    I say all this because it can be very undermining that cancer is not 'cured' unless you understand why. It is wise for us all (especially those who have had it) to take sensible steps against cancer.

    Very best wishes,

    Isadora.

  • Hi Sarah,

    It sounds a bit strange to me. I also thought that anything below 35 was good. My local hospital seems fine with CA125 readings around 25 or lower. Maybe you could ring the specialist nurse at your hospital to get a bit clearer picture? They never seem to mind explaining things in more detail. I'm sure it's OK though.

    Good luck

    Wendy xx

  • Sarah, I dunno about your Ca125 but I can tell you my own history. Diagnosed with OC by blood test August 2009, somewhere in the 800s, I was found to have after surgery stage 3c OC with stage 3 cells, i.e. the most aggressive type before you reach stage 4.

    I was treated by carboplatin chemo only - a decision my then oncologist made by herself, without explaining to me what she was doing.

    To cut a long story short, my oncologist, who now works in London, told me that I was virtually free and clear of a dangerous recurrence since any recurrence within 18 months of surgery is, in his opinion, the danger period. He has been involved in various OC studies for most of his working life, and he's now close to retirement age. It's now July 2011 which is 22 months after surgery, 18 months after chemo. My lowest ever CA125 was 2, when I was treated locally. It then jumped to 7 when I and my husband decided to go to London.

    My oncologist said he personally had never ever heard of a CA125 as low as that. The lowest he had heard of was around 4.

    My CA 125 wobbles around 5-7. It was last taken at 6, which I put down to stress and an outbreak of a tummy upset. I am waiting for for my next test next Friday.

    I'd say only this, depending on the age you are and the details of the machine your hospital and oncologist uses, follow the advice of your oncologist, unless you choose to have a second opinion, at a major centre for gynae-oncology. In which case I would say, call the nurse advisors at Ovacome before you make your decision.

    Personally, I'd have the three treatments, call Ovacome at some stage, and then make your decision.

  • Hi Sarah , I went for my check up yesterday,it is nearly 12 months since i had my last chemo and 17months since surgery and this morning the nurse rang to say my CA125 IS 17 which i am very pleased about.It has stayed at this level since my last chemo.It was 800 before surgery. Best wishes Sue x

  • I am one of the support line nurses at Ovacome. Please do feel free to give us ring to discuss this further 084453710554.

    It might also be helpful for you to contact the specialist nurse at your hospital and to ask her to explain what is happening..Any reading over 35 needs further investigation or if the reading is continuing to go up but no one has a reading of 0 even those who have never had ovarian cancer.

    Best Wishes Ruth

  • Hi Ruth,

    Thanks for the message, I do feel that my numbers will still come down not to much more, but the doctor said the lower the better, you are right, a reading over 35 is investigated, even then I think some women can have higher than 35 and that can be normal, what is normal for one lady can be very different for another lady, as long as it doesn's shoot up, so I have been told by my specialist nurse.

    Ruth always nice to talk to you on the phone for advice

    Sarah.

  • At the time I was diagnosed with two grade 3 tumours my CA125 was 158. After carboplatin it dropped to 4. It is now 6. Trying to keep calm is the best advice I was a. given and b. would now give to others. Look after yourself and try not to worry.

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