Hello everyone! First post here but have been reading a lot and found it very helpful. Mets diagnosed back in March of this year. CA 15-3 was tested in my initial work up for restage. My markers have not been tested again. Was wondering what is being followed by other oncologists and how often they are measured?
Currently on Ibrance 75 (due to low ANC)and letrozole and monthly Zometa infusions.
Thanks in advance ❤️
Hi Lakincaid my tumor markers are checked monthly . I know that some oncs only rely on scans, but my markers have always been important my case, so I’m glad they check them.
I get mine checked monthly as well but it is 27-29 I think. While some oncologists seem to think that the markers are not useful, from reading on this board it seems that there is often a correlation. I am ok with them being done frequently as I get other bloodwork done at the same time anyway.
Thanks! Mine haven’t been rechecked and I’m wondering what the rationale is. I’ve got a message into the doc and hopefully he will get with me soon. My number was 30 back in March. Have been in Ibrance and letrozole since April. My first rescans in July saw some improvement but I haven’t been able to stay on the Ibrance steadily because of neutrophils levels.
I have been told by 3 different oncologists that CA15-3 testing is not totally reliable in each case and other tests are more significant. The range of “normal” also varies. My previous oncologist said 0-20; another 0-30 and my current Kaiser onc uses 0-40. Apparently they can rise for reasons other than metastasis and that’s why they’re not given more weight by some oncs. My cancer markers are tested monthly when I have other bloodwork before starting a new Ibrance cycle.
Initially I was not told what they were unless I asked. Now I receive results each month with the others. They vary but so far within normal.
It sounds like you’d feel better if you had a discussion about it with your oncologist and hope they able to put your mind at rest.
Me too
Well I am on my second Oncologist and I seem to get more from my nurse practitioner that works for the oncologist. She is more of the middle man and answers any of my questions, she also will get the answers if she doesn’t know it! But every time they were talking my blood they would test the markers but they found out I didn’t have any markers. So she told me because I asked and they would not show they stopped checking for them and she said that can be normal so some doctors won’t test for the markers. I would ask your doctor, you don’t know and you need to be your own advocate it’s not like we get this because we want it or know what it is !
Hi :Lakincaid; They do check your bloodwork for other things as well. So it is good to have it done. They don't pay attention to sudden fluctuations as this can happen. I am on Verzenio and Tamoxifen. Have been since March. The lowest dose of both. Apparently, it is just as effective. It has been tested . If you suffer a lot of side effects you can have the dose lowered. First time I have seen no advancement of the disease. Took the report out and reread it to make sure it was right!
Cheers, June S.
My tumour markers are checked three monthly when I have a review of my meds. I'm same as you but 125 ibrance. I'm told that oncologists take more notice of scans than tumour markers. Mine have gone up a bit recently but the nurse said not to worry if it's not a leap! I feel well so I'm not worrying.xx
Hi me too 75mg and chevalier Letrazole and monthly injections Research shows no difference in outcomes for different palbo doses
Tumour markers are not used where I go at the London Onc Centre
Xx
Hi I have st 2 MBS - taking fusvestrant. My markers CEA, CA-125 are done monthly (at my request). Good luck. stay positive.
Thank you!
My CA 27-29 tumor marker is tested every 3 months along with a complete CBC panel and metabolic profile, my oncologists have never used CA 15-3, but I know every doctor has different protocols. Glad you are reaching out to your oncologist about this. Best wishes.
Thanks ❤️
My tumor markers CA27-29 are tested monthly along with my regular blood work. I was told that it’s a tool in an oncologists arsenal to see whether treatment is working or not. The markers do go up and down but as long as they are not seeing a significant jump, I guess they don’t worry that much about it. My markers have steadily gone down since starting treatment on verzenio and letrizole. I wonder if different meds have different protocols??? Maybe the drug maker of verzenio requests oncologists do the marker test while another drug maker does not???! Since you are concerned about it, I would talk to my oncologist on next visit. Good luck!
That makes perfect sense to me that it would be used in conjunction with other tests. I have already messaged their office and am waiting on a call back for more explanation.
Hello! I get CEA checked as well at CA15-3 monthly.
I receive complete blood work which includes 27.29 every two weeks. I am on Piqray and Fulvesterant.
My doc checks CA15 and CEA monthly. It has been a strong indicator for me and rises in CA15 - followed by scans have always indicated meds have stopped working and that it was time to move on. CEA has not been so strong an indicator but it is normal now.
I am "celebrating" my three years "anniversary" on this journey this week. My initial CA15 was 500 (normal 30) at one point it was 8000 (not a typo) in Jan 2021 it was 800, it is now hovering around 40-50 after numerous rounds of IV Taxol. For me, this tracking is critical to treatment decision. I was one year on Ibrance/Letrozol, 2 months on Faslodex, about a year on Xeloda/Capcetibine, and on Taxol now since March 2022. Mets vary - appear and disappear - have had mets in lungs, bones, and liver. We are currently targeting liver as most other spots have resolved.
hope this helps
Thank you! I appreciate the information.
Mine seem to track with progression as well. But my doctor was clear that isn't always the case. It's funny how so much time is spent on medical data and research, and ecologists claim statistics as the basis so many treatment decisions--then we all end up as n=1!
I think it is an argument for a doctor with long clinical experience not just book knowledge.
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