My new oncologist wants to add a new tumor marker test to my regular tests for CA15 and CEA. I know these guys all have widely varying ideas on which ones - if any - mean anything. So just looking to see if you all have any experience with this.
My Ca15 has always been an accurate indicator and predictor of when we need to change meds.
Luckily Trodelvy has been going well since May 2023 and I hope this continues. It's really been a good drug for me and I've adapted to the side effects fairly well. So glad we have been able to access this med.
Allison
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My oncologist used to test the CA27/29 for me for at least a couple of years, in my earlier cancer years, before my mets dx. Along with (I think) the CEA. I must have also had the CA 15 though at some earlier time because later, around my mets dx stage, I asked about why I wasn't still getting the CA 15. So she switched the testing to that plus the CEA, dropping the CA 27/29.
And it turned out the CA 15 was the one that really tracks to my disease well so I was peeved at that point that we hadn't been doing it all along because it ended up being 5 months from the first time I had a new physical complaint (which later proved to be a partial spinal compression fracture) to the eventual dx.
A long-winded answer. All to say that I think the CA 27/29 might be more relevant to cancer spread to other areas like bowel? I think I once read it is regularly used for one of the other cancer types. But I'm not sure.
Alison. I think CA15 and CA 27-29 are very similar; I get the latter. If you google the difference, it says CA 27-29 is more sensitive to breast cancer. (My Medicare statements show that I get CA15 even though I get 27-29. I don’t really understand …)
Great that Trodelvy is good for you! It goes to show that everyone is different and we shouldn’t worry about side effects ahead of time.
Thank you and yes - side effect feedback is helpful but it shouldn't necessarily deter us from a treatment option. This site is good for considering your options and seeing different perspectives.
hi Allison, I started my treatment in Nz where the onc followed Ca15.3 and ten moved to Boston where my onc changed to following Ca27-29 for past few years. But I’m back in Nz for a few months a scheduled to see my lovely onc in Valentine’sDay.. they don’t do the Ca 27-29 in Nz so I will get the Ca 15.3 tomorrow for her to assess when I see her. I have been on xeloda for a year… and the Ca 27-29 was 450 when I started and now down to 150… feeling well. So getting the other marker might not tell us anything as we won’t have anything recent to compare it to.
Hi Bettybuckets! I trust you're having an amazing time in NZ. I'm 6 days into the Xeloda now and all good so far!😅 I was wondering how you're doing with the fact that we are supposed to be avoiding the sun while on Xeloda. Are you just slathering up with lots of sunscreen? I'm hoping at some point to be able to go on a lovely island trip but have been concerned about the sun issue since reading someone else here on the same drug broke into a bad rash after a day in the sun on holiday
Oops I forgot about the sun on xeloda but I do like to sunblock… I swim in a Lycra shirt twice a day on the most gorgeous beach in the world! Onetangi Beach on Waiheke island. Today in the morning my friends and I swam along the shore for 20 min or so.. then later a friend sailed down in her huge gorgeous 50 fcatamaran and we swam out 300 meters to climb aboard for some homemade treats and a nice catch up. It was fascinating as she is a kiwi about 70 and she adores Trump and my American friend and I are not at all fans but we had very civilized discussion which I never would dare to do in USA.
My doctors have always used CA27/29 as a way of telling what is going on. In fact that was how my MBC was first discovered. My marker had gone up slightly after being off Arimidex for 2 1/2 years after my initial diagnosis. I was not experiencing any pain so there might not have been another way to find out something was wrong until much later. My doctor decided to do further testing and found the lesion on my ischium. She said it was caught "ridiculously early." I credit my doing well with that early diagnosis. My previous doctor also used CEA but my current one does not. I have never had the CA 15 done though. It is so interesting that doctors have different protocols for tumor marker testing. Wondering what draws doctors to do these different tests. Anyway, so happy you are doing well on the Trodelvy. Sending hugs and prayers that your good results continue.
CA 27.29 has been used by the Onc since the initial dx in Oct 2011. to date, all three TM's are performed with the blood draws. it was (all) the TM's that alerted the Onc to mBC in July 2015.
I get all three. Some people here say that is silly, because two of them overlap. I forget which two. In any case, the one that predicts progression for me is the 27-29. It comes in last, takes an extra day to analyze. The other two tend to stay in the normal range. When the 27-29 goes up consistently (not that high, just in the 50's), I get a scan, and there it is. I don't have it in the bowel -- just bones and chest/neck.
That's so interesting because for me it was the opposite. I had been getting tested for CA 27/29 ( nothing looked out of the ordinary) but had been having a variety of extreme muscle-skeletal issues over a few months . Finally a PET showed the MBC. When we switched to testing the CA-15 it became apparent that that was the one that showed the activity of my cancer and we've been testing that one ever since (and it reliably moves with my cancer progression/regression). So even though others say those 2 tests overlap there must be something also quite different about them to explain my experience
I got tested yesterday. The 15-3 is back. It is slightly above the cut off for the first time since I was initially diagnosed. Dropped to normal for the next five years, with treatment. The 27-29 has gone up three times, and each time a scan showed progression. Now I am freaked out because I am on a new treatment that I thought was working, yet the 15-3 is high. The 27-29 is not back yet. Not looking good.
Hi there! I've gotten the CA 15-3 and on a few occasions the other two. They have always been pretty correspondent to one another and the CA15-3 has been so predictive for me, we have stuck with it for the most part. I'm so glad to hear Trodelvy is going good for you, that gives me hope. I have been terrified to move on to Trodelvy and have even thought of refusing it when the time comes, because the literature is so scary. Would you please share your side effects with us? Even though we are all different and react differently to all of the meds, I get a lot of comfort knowing what I could expect from new lines of treatment as far as side effects. Did you lose your hair? My doctor says it's not as bad as the literature makes it look, but she's not the one taking it! I have to laugh about that when I tell her that, but it's true! Please, if you feel comfortable doing so, share how it's been for you with the side effects. Take care and thank you for sharing your questions and thoughts with all of us!
Yes - Trodelvy has not been really that bad and it is working. My CA15 has come down from over 1000 to 200. Please don't turn down this option. When I feel bad - I try to remember that its the bad stuff being killed. I wrote a post about it. They pre-med you to death to avoid the feared diarrhea - to the point where I suffer the opposite problem most of the time. The infusion nurses tell me Enhertu is much worse so as that's my next suggested treatment, I understand the fear for sure.
So its 2 weeks on one week off - first week mostly nausea and constipation (if I dont get ahead of it with meds) and crazy day coming down off steroids. Week 2 nausea and fatigue and I'm not sure thats from the neulasta I get that week but my infusion is on Monday and Wednesday I sleep all day. I typically lose 2 pounds week 1 and 2. Week 3 I feel good and eat like a pig so that when I weigh on for the next round, I'm back up the 2 pounds.
Thank you so much for sharing your experience about Trodelvy and how it has not only affected you, but helped you on this journey. You have switched my opinion, and I will most likely give it a try when the time comes. Take care, and thank you again!
Indeed, thanks too. Trodelvy is one of three options IF eribulin has stopped working. I find it really interesting that some of these meds are for triple neg and we are being given them when we aren't. My tumor marker's have always been accurate using the 15.3 and as I mentioned in a long winded post, after anastrozole and Ibrance/fasoldex, Dr. just jumped to chemo pills. Never had the ESR1 test. At that time, tmarker was at 70 and CA at 7.5. Not bad really, BUT 6 months of xeloda, then 6 months of vinorabin, then 5 months on enhertu and at the end of that I reached 4760 and 87ca. Scan kept saying what we expected. Started eribulin and I am at 3078/33. Went up 400+ points. I am in the mist of changing Dr.'s, getting a second opinion and had treatment yesterday with eribulin and feel pretty darn good. Still waiting on the confirmation with her2neg changing. If it did change, I think that enhertu would have then worked but it did nothing, markers just continued to rise. Pet scan was Monday mri was yesterday am. Now, just waiting. I rely on my tm's some do not want to know, I would rather know, as it gives me peace of mind. Thanks again for letting us know how trodelvy is working for you.
Thanks I want to help and to document my experience for the women who come down the line. Hopefully that will be reduced significantly with these treatments.
That is iv right? my test for her2 came back with no amplification, so neg. Still waiting on the esr1 test. I changed dr and so the head of the dept is taking me on and agreed with the chemo given over the last 2 years just was not working. Just wish the tests would have been done 2 years ago when I requested to make sure that my original dx had not changed. Markers at at 3078 as of Jan. Did another test last week and they have not posted yet. Dr. has given me everolimus and exemastane for the time being. Kind of in limbo. Again, you give me hope knowing that at one point you were at 8000 and now you are doing so much better. Trodelvy may be next too. Will find out next week. Thank you for updating all of us.
i do also CA153 and CEA alone with CA27.29 but if elevated CA153 a d CEA not specific because my elevated 2 years ago related my severe inflammation then i took steroid than cea andca 153 drop but ca27.29 always same number dont go up and down but still elevated when inflammation occur for my case
Hi Allison, I just wanted to thnak you for posting your journey with trodelvy. I might be going on it too. Just waiting for a few more tests. Did your onc tell you how long you would be on it - once your markers were normal and pet/ct scans showed NED? How was your last scan? Plus, did they mention then a maintenance drug after your treatment of trodelvy? Thanks in advance.
I'm on the "take it till it stops working" train. My markers have really never been even close to normal and I'm sad to say the last tests were headed slightly up. I have a PET scan this week before my next infusion.
I'm afraid that my history of drugs only working for about a year is set to repeat and I will be off Trodelvy after March. I have a new oncologist but my last oncologist said Enhertu was my next option. I'm grateful that there is an option after six treatments.
Geez, I understand, but at least those markers came down. I am still around 3k right now and 2wks ago new doc put me on exemestane and everolimus because eribulin stopped working and I needed more tests that the last doc would not do. So waiting fror the ers1 to come back to give us some more options. Mine mk's were at 70 when I started with old doc and for the past two years that have just gone up. My her2 low was confirmed it was not amplified so still neg. Enhertu did not work at all. I am kind of in limbo. Hope it works for you.
I hope you have some resolution too. I think my CA15 is around 300 now - at its highest was 8000 (not a typo). I think we can also feel when things are moving around. I feel like Trodelvy healed my liver because I have no more pain there (hopefully scan shows this) - liver worries me the most. I feel like my bone mets have spread just due to discomfort in my hip...I hate to say but I can "live" with bone spread if this stupid cancer stays out of my liver and lungs.
Yep, I hear you loud and clear. You are the one that gave me hope when I was such a mess. Well, still some what, but my mk's were 5k and someone told me about you at 8000. I too know my body and can feel it. I knew when the last scan was done that there would be action in my left femur, because I felt it. Sure enough. These last two weeks on everolimus and exemestane I have had bone pain around my ribs again and back, which I think is a compression issue because my entire column is riddled. Not sure in fhte other pain is from the meds. So, see onco tomorrow and tests would be done and we'll see what the next step is. I just wish the tests would have been done sooner as the last 2 two years I have gotten worse. Super important to be proactive. If your dr is not listening and you haven't had tests to makes sure that your dx has not changed or you have mutations, and youhave asked 1, 2 and 3x's, need to change dr. Hang in there and please let us know what's next. We care. Blessings
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CA 27.29 Markers - Beginning of treatment (Verzenio)
PET Scan Results
CA 15-3
Elevated ca125!
