Plateaued CA125

mkmilburn

In Oct I was diagnosed with recurrent Uterine Cancer. Numerous tumors in my abdominal cavity. My ca125 was 135 at time of diagnosis. 8 weeks later it was 439 (before treatment). Next draw was 244 (2 days before first treatment). After my first treatment it was 214 and then 222 after 2nd. Had my 3rd cycle last week so don't know what it is now. My doctor is a bit confused because it had a big drop before I even had treatment, but now it's plateauing. Has this happened to anyone? The weird results, and/or plateauing. I have read that sometimes it takes 2-3 cycles to see improvement for some. But, that's internet "research" and my doctor is the one who knows

My doctor has ordered another CT to mind out what's happening. He said we may need to "rethink" things. I am super confused (been confused all along since this came back the way it did - initial stage 1a and grade 2 to now stage 4). Experiences? Thoughts? I just know I'm scared and confused.

Afoste3

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

mkmilburn

https://csn.cancer.org/discussion/comment/1693222#Comment_1693222

Thank you! My doctor at my Oct appointment was confused that my ca125 was 135. There was no indication, and he even said that he (w/out) the test would've said, "See you in Feb!" He ordered the CT and there it all was. I am definitely trying not to panic As scary as it is, I am appreciative of the fact that he's it sitting back and waiting . No, we haven't discussed any other testing. He did mention biopsy since we didn't a couple months ago.

Afoste3

https://csn.cancer.org/discussion/comment/1693223#Comment_1693223

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.

mkmilburn

https://csn.cancer.org/discussion/comment/1693224#Comment_1693224

Yeah. The radiologist diagnosed it and he was sure it's still uterine. That's why he didn't do it in Nov.

thatblondegirl

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

mkmilburn

https://csn.cancer.org/discussion/comment/1693236#Comment_1693236

Alicia,

Thank you!! Yes! It is definitely frustrating! I am "happy" he is not relying on the numbers alone. I hope all is well with you!

Margie

thatblondegirl

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

mkmilburn

https://csn.cancer.org/discussion/comment/1693435#Comment_1693435

Hello! Thanks for all your input and support. My CT results were, "Mixed Results"

according to the radiologist. Most grew, couple shrunk. No new tumors. Doctor said not getting worse, but not really getting better. I did have my 4th cycle today. Since keeping stable and not reducing more, he recommends going with immunotherapy (Keytruda) and a chemo-like pill. I don't know the name of it. Just have to get insurance to approve. People I've talked to thinks this is a good, proactive move and nothing to be upset about. Of course my brain goes to, what if it doesn't work? I just have to remember that it is something totally different than chemo so I can't use that as an way to go to the negative. I also have my fingers crossed that we see improvement from this 4th cycle.

I did get my medical cannabis card to help with the painful side effects The edibles and the cream shoulD help The doctor prescribed Percocet I'd rather go with the non-narcotic, but we'll see