Plateaued CA125

Hi MK,

I can only speak to what my mom's experienced--her CA125 has been a very good marker as to what the cancer is doing. It was elevated in the beginning, dropped way down during chemo, then up again when she recurred. She did have something similar to you with her recurrence in that it was almost 500 when there was no visible disease on CT (just ascites fluid), dropped with treatment, then back to 350 when the tumors progressed (kind of weird to me that it was higher when there were no visible tumors, but the fluid must have really set off the marker).

There have been lots of threads that discuss how CA125 can rise and fall for reasons besides the cancer, so that's always something to think about. I personally think it's good your doctor is taking the "plateau" seriously and investigating further with CT. There have been lots of posts from women who go through the 6 rounds of chemo and it does nothing to the cancer. To me, it seems better to know that sooner than later so you aren't dealing with the chemo effects for no benefit instead of switching quickly to something else that may work better.

Have you had genetic and genomic testing on your tumors? If not, you should think about that as part of this investigative process. The chemo is the "typical" first line treatment for everyone with this disease because it works for the largest group. If you fall into the group where it isn't effective, then treatment is more tailored to the properties of the tumor. My mom's testing was through FoundationOne. Your doctor will arrange for the testing and it is usually covered by insurance. If not, they give a large discount, so it is affordable based on your income.

It is a scary and unsettling process for sure. But try not to jump too far ahead, easier said than done I know!

Anne-Marie

Sounds like he's on top of it! You'll need to biopsy the tumor to send the tissue off for testing; I'd make sure that gets done if not suggested (I'm betting that's why he mentioned the biopsy). Please keep us posted as you feel up to it.

Hi, MK

Anne-Marie is right that there are many threads discussing CA125’s. It was helpful for me to read them because it kind of demonstrates that that number can be all over the place. Bottom line: it’s an indicator for some people, and not for others. I’m pretty much in the “not” bunch, so my ONC’s view is “We’re looking for stable.” So, like you, a plateau.

I know it’s completely frustrating and scary. I commonly refer to it as “that stupid CA number,” and dread getting it every time.

For me:

Before hysterectomy (I was Stage 2, Fallopian tube with secondary peritoneal, but no one knew it): 20

After 2 surgeries to remove all: 66 (What??? Maddening! Post-surgery inflammation probably caused this.)

During 4 1/2 months chemo: 32, 24, 22, 34, and 20. ( My stomach lining was taking a real hit, and that inflammation probably caused the number to rise.)

Post- chemo: 17, 19.

You can find information on the internet where women have had numbers like 135,000.

My research concludes that new rounds of chemo should never be based solely on the CA. I’m glad your doctor is doing CT to investigate!

Best to you! ❤️,

Alicia

Good morning, Margie!

I wanted to let you know “that stupid CA number” this week was 21. So, post-chemo: 17, 19, 21. I guess I’m supposed to be happy with that, but I’d really prefer - even though it’s only 2 points - that it was 2 puts in the other direction.

I use Quest for bloodwork. I just happened to notice in tiny, tiny print that as of March they would be using a different “assay” for CA125. It read that information would be available until June as to how to compare results with former “assay.” Oh, goodie! Now you’re going to throw a new wrench in the system??? I searched online for this and of course, couldn’t find anything. Thank goodness I caught it, or some crazy number would show up next time and put me in a panic for no reason! Just a warning to those of us currently keeping tabs on CA results…

Your remark, “….my doctor is the one who knows” caught my attention. I just recently had that problem with my ONC and his advice about the immunosuppressant I’m taking. (I may have written about this here somewhere else?) He kept - and even still this week! - saying take the 200mg….even though 1) it had already resulted TWICE in a need for blood infusions, and 2) he did not know and was blatantly disregarding the protocol of the drug maker! The drug maker’s protocol says to STOP until blood issues are resolved and resume at a reduced dose! My point: sometimes they don’t know what you wholeheartedly assume they know. I’m just sayin’…. 😊

Let us know how your CT results and how you’re doing!

❤️, A