Ca125 numbers not dropping like in the behinning

[Sallyklingforth]

I was diagnosed with ovarian cancer in August of 2016. My numbers were very high when I started the chemo my numbers were dropping quickly. I had the debulk surgery and my numbers were about 850 and have not dropped that much. After 5 chemos it is still at 650 and I just had my 6th and so called last chemo. I doubt I will hit 35. Has anyone had this happen and if so what happened after that

[Shelbel]

I've only just had my second chemo of 3 before debulking surgery, but have you asked or have you been told you are no longer responding to the treatment? I was told about the 80/20 rule; 80 out of 100 will respond to the chemo while 20 will not and that a person could stop responding at any time. Then they would try a different chemo. I would talk with your Oncologist and make it clear you need answers and what can you do next! A clinical trial? New chemo?

Stay Strong!

[Dollysmum in reply to Shelbel]

If I'd come here looking for help and read your post, I'd be opening a bottle of gin.

What you were told might not apply to Sally or me for that matter.

[AndreafromSHARE]

Hi Sally:

Reading your post and the candid responses thus far, I’m taking a crack at answering you with honesty, optimism and a link to more information on the CA 125 tumor marker.

CA 125 is an imperfect marker for some women, but gynecologic oncologists do use it to assess/monitor whether a particular chemo regimen is working for a particular woman.

Research has shown that ovarian cancer is very heterogeneous at the molecular level and perhaps these differences are why some treatments in the recently-expanded ovarian cancer arsenal, are effective for some women but not others.

The CA 125 is only part of The Big Picture your medical team is likely to consider along with scans, physical exams, etc. They may recommend tweaking or changing the regimen or perhaps prolonging it.

I was diagnosed with Stage IIIC high-grade serous ovarian cancer twenty years ago. My CA 125 plummeted (pretty sure it was at least 800 to 1,000 initially) after cytoreductive surgery and the first six treatments of Taxol/Cisplatin, but it never fell below 35 and the pesky bastard kept blipping about in the 50 to 70 range. Thus, with no cancer showing on a scan or physical exam, but being told during a second opinion that residual disease might be small-scale or too diffuse to see on a scan, I stayed in treatment. Another four rounds – this time Carboplatin/Taxol, followed by 26 rounds of weekly Taxol (yes, before the dose-dense regimen was even A Thing!) and even some Doxil thrown in for good measure because we heard positive reports from the field.

I entered a clinical trial in a different city when my stubborn CA 125 was still in the 50 to 70 something range and since I’d signed on the dotted line for a laparotomy, the surgeon performed one and he did not find any cancer and thus did not administer the laser burn they were trying out in 1997. These days, doubt you would find any gynecologic oncologist who would treat solely based on a CA 125 being out of the normal range.

The lowest my CA 125 has ever been is 18 and since 2012, it’s been going up very slowly. Now it’s 37. I had a CAT scan, first since 1997, in June and no evidence of disease. The number still bothers me, but I view increased surveillance as a gift. Sure beats being blindsided by a late-stage cancer, which I remember vividly.

So Sally, I think Shelbel was right to encourage you to talk to your gyn onc about what she/he thinks is going on and what Plan B might be. And, as Dollysmum, indicates – keep in mind that we are all different and the statistic (in my opinion) always worth focusing on is the Statistic of One – meaning you. That said, I’m also all for opening a bottle of gin at anytime. I may prefer a good Bordeaux, but I could go for the occasional martini or Tom Collins.

Sally, here’s a link to a clearly written booklet on CA 125 from the Foundation for Women’s Cancer, which merged last year with the Society of Gynecologic Oncologists:

foundationforwomenscancer.o...

Wishing you the strength to make informed medical decisions with your medical team and, of course, the best possible outcome.

Andrea

[Sallyklingforth]

Andrea thanks for being so candid. You sound like a real warrior. I hope my story turns out as well as yours.

[faith1962]

In Dec. 2016 i was diagnosis with stage III C my stomach was drained 3 times. My CA 125 level was 858 but went down to 74 after 6 rounds of chemo . I wish you the best .God Bless you ,