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tumor markers

Jenniferp2122 profile image
11 Replies

hello everyone!

My father was diagnosed with MBC in May of 2022. He has been on Ibrance letrozole xjeva every 6 months and lupron shots monthly. Initially his tumor markers did a steep decline I think they went from 66 and dropped about 5-10 points each month and now they have been hovering at 23 for the past 3 months. Is this typically what happens? It shouldn’t continue to decline so steeply? Additionally my dads CEA tumor marker went from 7.5 to 4.8 to 3.5 to 2.6 and now it’s back to 3.1. The jump from 2.6 to 3.1 should be no big deal right? This might sound silly we are just new to this!

His first PET scan on 9/16 showed NED so I really pray it continues to stay this way. Thanks so much everyone.

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Jenniferp2122
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Nocillo profile image
Nocillo

Going from 2.6 to 3.1 is not a big deal from what I know. As long as he is within the ranges he should be fine. Many doctors don’t pay any attention to the markers. I do believe in them, but there are many factors that can contribute to their rising or lowering. I’m no professional but sounds like he’s doing well.

USIrishcolleen profile image
USIrishcolleen

Jenniferp2122,

From what I have heard a lot on this site is that oncologists focus more on scan results that tumor markers.

To repeat what the previous person posted, I am not a professional, but to have your Father ask the oncologist.

Best,

Colleen

Threadsgirl profile image
Threadsgirl

I have had my ca27-29 tumor marker checked monthly for 2 years now. You really can’t look at the trends from month to month, especially small fluctuations. I believe that they are useful, but they do go up and down within a range. It may have something to do with the labs, any other things going on with the body, how the blood was processed, etc. A steep decline should be a good sign, the Ibrance is working to kill off the cells, although I have read that sometimes they can go up a bit because the markers are on the outside of the tumor cells, if cells are dying and breaking up they can release more markers into the bloodstream. The bottom line seems to be that a steadily increasing trend over time can be indicative of something going on. It’s not an exact science, which makes everyone anxious at times. Not silly.

PJBinMI profile image
PJBinMI

Your father's tumor markers look great to me! And yes, it is not unusual for them to decline and then level off. But how we patients feel is most important, then scans and tumor markers a very distant third. Alot of onc's don't test for tumor markers because they are not always reliable, can rise due to things other than cancer progression, and they can cause unneeded anxiety. Jennifer, my mother died of lung cancer in 1985, 7 months after she was diagnosed. For me, that was more emotionally draining than my own cancer has been. Our parents are such important people in our lives! It's wonderful that you can be there for your father, but be sure to take good care of yourself, too! And know that we can be here for you as well as for your father!

Sister3nkc profile image
Sister3nkc

Hi Nocillo, Sorry about your fathers diagnosis. It is heartwarming to see a comment by a family member on behalf of their loved one. Your father is so lucky to have you. Your questions are on track and not at all silly.

I am a 66yo female initially diagnosed Stage 1 BRCA in 2000. Went through surgery/chemo/radiation, was told I was "cured, " fast forward to 2015 the cancer returned to my left lung, tumor markers were 120. I was started on Ibrance/Letrozole, markers dropped a bit each month until they were around 20. After 5 years on this regime the markers began slowly increasing, but I was told my scans were "stable" with only a few very tiny new nodules scattered in lungs. Seemed to make sense although it elevated my concern. I've have several doctors tell me that they don't rely on tumor markers alone. Over the course of 2 years however, my markers continued to climb and in Oct 2021 a new lesion was found on my L1 vertebrae! All this time I felt like a time bomb was waiting to go off because the tumor markers had now reached over 500. I had radiation therapy to the spinal lesion, the Ibrance regime was discontinued and I started on Fluvestrant injections. Tumor markers continued to rise. When they reached 770 my oncologist said a newer study showed that patients in my classification showed improvement when placed on Kisqali along with the Fluvestrant. 4 months into that regime my tumor markers have FINALLY started to decline. Last check they were around 500. I am so relieved to see what is hopefully a downward trend.

My point in this long story is this. I watch my lab values closely also, and as I have shared, a few points fluctuating is not alarming. Even if they trend up, the tumor markers by themselves are not enough for an oncologist to change therapies. Rather they are part of the whole picture and are looked at how they trend over time. I suppose this makes sense, however I began to doubt the logic of this continued approach when over the course of 2 years my markers continued to climb exponentially into the hundreds! I knew it meant "Something", but whatever was causing the tumor markers was not clinically evident enough to be detected , "yet." That is frustrating and frightening.

I'm not an oncologist, just a patient who shares similar experiences with many on here. I have learned to pay attention to what is going on, no one will advocate for you as much as YOU, and in your father's case he has you also! I always trust doctors and give benefit of the doubt until if and when something happens to lead me to suspect/believe otherwise. I have changed oncologists before, when I no longer felt comfortable with the relationship. It's vitally important that you have a good rapport. The best. I network with others (such as this site) and do my share of research online from reputable sources.

As time goes on you learn alot and some comfort comes with that knowledge. This will also help you identify significant changes when/if they appear. So, pay attention, ask questions, get a 2nd opinion if something just doesn't sit well with you.

Best of luck to you and your father.

Namaste. ❤️🙏

13plus profile image
13plus in reply to Sister3nkc

Does that mean you were on iBrance for 7 years?! If yes, that is an incredibly good run! I only got 2 1/2 years before symptoms and markers started increasing. So on it for 3 years in total before switching drugs

Sister3nkc profile image
Sister3nkc in reply to 13plus

Yes, from March 2015 through September 2021! And the full 125mg dose! I had a good run on the Ibrance!

Aquadog profile image
Aquadog

Hi Jennifer. What a lucky dad to have you on his care team and hey - not a silly question! This forum is a great resource - don't hesitate to ask any question that comes up. We don't give medical advice, but we've all been dealing with this disease, so lots of experience here.

Your dad's numbers sound very typical (and by the way, they sound great). My numbers did not fall that quickly, so I'm thinking he's responding very well to treatment. I've been on Ibrance/letrozole/xgeva for almost 6 years and my tumor markers have bounced up and down by 25 points - with no sign of progression. The real tell is in the trend - not the single bullet point. A steady upward rise in numbers might (MIGHT) mean progression, or it might not. Those markers are slippery little devils - they react to many things, even colds and vaccines.

Hugs, Susan

13plus profile image
13plus

Jennifer the markers are sometimes a nice tracker for us between scans but they can be very unreliable for some people. In my case they do tend to track the cancer progression and regression but my oncologist says sometimes peoples markers can be low but the cancer is growing, for others they can be high but the cancer is under control. So read them with a grain of salt and know that a small change is,for the most part, insignificant. A large decline - you may as well go celebrate :) A large increase - be vigilant for other symptoms.

The longer we can stay on each drug the better because although there are quite a few options out there, it is not an infinite number. So E.G., with me, my markers were at one time slowly going up over several months but I felt fine. Only when I started to get physical symptoms that were increasing over time, and my markers started going in bigger jumps too, finally a scan showed progression, and that's when I changed drugs. Hope that helps understand how one may use them as a "guide".

Jenniferp2122 profile image
Jenniferp2122 in reply to 13plus

thank you so much! Is .5 of a point enough to count as true increase though?

Jenniferp2122 profile image
Jenniferp2122 in reply to 13plus

also do you have the BRCA 2 gene?

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