NED and ca 15-3 markers?

[Greatday2]

For those of you who are NED, what have your CA 15-3 markers been?

[Aprilfoolz1]

Greatday2, I've had nead scans since 9/2020 so almost 4 years . I was dx stage IV in 11/2019 and my 15.3 was 9. I had plenty of tumors light up on petscan when dx so my 15.3 at 9 doesn't make sense to me . It hovers between 9 and 12 for the past 5 years . For me , tumor markers have yet to correlate to an increase in cancer . I know they are accurate for many people , especially it seems with ILC breast cancer . My breast cancer is IDC. I have scans coming up in Sept and hope they continue to show no evidence of active disease .

[Greatday2 in reply to Aprilfoolz1]

Thanks for sharing!

[MaryCos]

I used to do the CA 15, but for the last few years they have been doing the CA 27 for me. Similar scale. Even though I am NEAD, my markers are not in the normal range. They were bouncing around within a 5 point range for a while, with the highest being around 52. Then I did get one notable spike of about 25 points. Highest it has been is about 82. Came back down a bit, went up a few points, and the latest labs have me at around 66. Incidentally, I did a liquid biopsy after the first spike happened and there isn't anything that can be detected in my blood. Meaning, not only could they not detect any mutations, the test couldn't detect cancer. So, very low cancer burden right now, and my tumor marker spike was the only thing that wasn't saying everything is dying or dead. Then again, a fellow MBC patient advocate (who is a retired doctor) said that we can also see a rise in markers when cancer is dying off! Important info to know.

[Greatday2 in reply to MaryCos]

Thanks for your reply

[hurricaneheather]

initial dx Oct 2011. mBC dx July 2015. it was the CA 15.3, CA 27.29, and CEA tumor markers (TM'S) that July which led to the onc repeating them and doing further testing, identifying the mBC. started treatment in August 2015. NEAD since March (?) 2016.

in Sep 2015, first recheck of TM'S. CA 15-3 was 382.8. on 12/2/15, the marker was in normal range at 28. since Jan 2016, it fluctuates between 11, 12, 13, 14, 15.

since i mentioned the other two TM's, CA 27.29 has been in range since January 2016 and CEA since Oct 2015.

i do Signatera ctDNA testing, also. all seven of the quarterly tests have been "0.00."

[Greatday2 in reply to hurricaneheather]

Thank you!

[Greatday2 in reply to hurricaneheather]

Am I remembering correctly that you stopped Ibrance?

[hurricaneheather in reply to Greatday2]

that is correct. January 2024. next TM draw is Sep.

[monkeygirl62 in reply to hurricaneheather]

I was wondering do you still get scans with the tumor markers? If you do is it only once a year?

[hurricaneheather in reply to monkeygirl62]

yes, a yearly scan since 2021. mostly, due to the stable/NEAD results.

[Greatday2 in reply to hurricaneheather]

Looking forward to hearing about your good results in September

[Fiercefighter13]

My markers have been the only way of knowing when I have progression. It's been 5 years now since Metz was diagnosed, and as soon as I started the first treatment of Ibrance/Letrozole the lowest they went was 67 from 190 to begin with. They were steady at that number for 1 year all the while all my scans (MRI/CT/PET) kept showing NED. They climbed after that and I stayed the course having scans every 3 months (PET), still NED until they hit about 200 and we switched therapies regardless of scans.....to make a long story short, I was put on 4 different therapies, always showing NED but markers got to almost 600. I insisted on an endoscopy/colonoscopy and there it was, full of cancer and none of the scans ever picked up anything. I even had scans done at my doctor's facility, and the local hospital since I wanted to be sure it was not an error of where I was having them done. I've been on Xeloda now for 1 year and 8 months and my markers dropped to normal the whole time. I had another endoscopy and while my stomach was still irritated and biopsied with cancer, it had healed tremendously from the year before. I am ER+/PR+ Her2 negative but it is lobular not ductal. Lobular is very, very difficult to see on any kind of scan. Luckily, my markers have been spot on. I hope this helps answer your question.

[Greatday2 in reply to Fiercefighter13]

Thanks for your response

[Hazelgreen]

Over the past 3 years, my CA 15-3 markers have varied from 190 (before taking ribociclib with letrozole) to 64 (on 400 mg ribociclib, by March 2022) to currently 21.

I started taking 600 mg of ribociclib daily March 8, 2022. By Sept. 15, 2022, my CA 15-3 was down to 35. (In Canada, 0 to 30 is considered the normal range.)

Oct. 20,2022, I started skipping meds on weekends (keep in mind that some ribociclib stays in the body for up to 8 days before complete elimination). By Jan.13, 2023, my CA 15-3 was 18.

Since I think cancer meds reduce one's energy, I want to take as little as possible. On Feb. 14, 2024, I started reducing the amount of ribociclib to 200 mg on Wednesdays. In April, I reduced ribociclib to 400 mg on Fridays.

I currently take a total of 2000 mg of ribociclib on weekdays (400, 400, 200, 600, 400). My most recent (July13, 2024) CA 15-3 was 21.

Please note that I will become 79 years old on Sept. 2nd. I think all body functions slow down with age.

[Greatday2 in reply to Hazelgreen]

Thanks for replying. Did you start the dose reductions on your own or did your doctor suggest it? I also would like to take as little medication as possible as possible.

[Hazelgreen in reply to Greatday2]

I started the dose reductions on my own, but my oncologist (an older gentleman) was supportive once he saw that my CA remained in the normal range.

[Hazelgreen in reply to Hazelgreen]

I have a CT scan scheduled for August 13, lab work August 19, and a visit with my oncologist on Sept.5 so I'll know more soon.