Who uses CTC (CellSearch) tests

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EV11
EV11 Member Posts: 127
edited March 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hi...for the past 9 months I have been having a CTC test (insurance doesn't cover it so I pay for it myself) run along with a CA27-29 monthly. My onc and I started having the CTC test done along with the CA27-29 to see if we can find another way to evaluate my treatment response or feel more confident in calling something "disease progression," since my lobular MBC doesn't show up very well on CT, PET, MRI scans. My very extensive bone disease does show up on bone scan and the other scans, but there is such extensive small metastatsic lesions scattered throughout my skeleton it is difficult to monitor bone response/progression. I have known peritoneal/omental/abdominal found during BSO surgery in 2015, a few months after my de novo stage 4 pleomorphic lobular diagnosis. And intra-colon mets were found very unexpectedly during a routine screening colonoscopy last spring.

Last summer my CA27-29 jumped from the low to mid 40's (where it had basically stayed for the past 2 years) up to the high 50's and stayed there fro a few months. At the end of the summer we switched to Xeloda from Ibrance/letrozole and started the CTC testing.

My CA 27-29 has risen over a few months to 70 after starting Xeloda, then has started to fall the last 2 months to the low 60's...My CTC values have been 2 at the start, then 2 again, 3, and 4 in late January 2019 (no direct correlation to the CA27-29) and then, surprisingly, 0 two weeks ago. I am very curious what the next round of testing will show, especially since a CT scan I had done the week the CTC test resulted 0 showed thickening of the bladder wall for the first time. Go figure....

This is the first time any of that has shown up on a scan... last scan was a year ago, so don't know if the bladder thickening is stable, better or worse over this year of rising TMs.

I am very interested in hearing from anyone who uses the CTC test, and if it correlates with other TMs and or disease response on scans. What value do you find from it? How else is it useful for you? Or, what other test(s) do you use, especially if your disease doesn't show up on scans....

Thanks for any input or insights you have to offer.

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  • Daniel86
    Daniel86 Member Posts: 271
    edited March 2019

    Ev, sorry if this is not strictly related to your question but today along with the usual TMs, my wife's GP ran a test to detect CYFRA 21-1 which, to my knowledge is linked to lung cancer specifically. I then proceded to look it up in relation to breast cancer and it seems like it's been used for the metastatic phase for a bit now. Maybe GP is onto something 🤔

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited March 2019

    Ev11, my NO orders tests to measure VEGF, C reactive protein, and other indicators. Perhaps worth looking into!




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  • EV11
    EV11 Member Posts: 127
    edited March 2019

    Thank you both for these suggestions...I will discuss these options with my onc when I see her next month. I am especially interested in the CYFRA21-1, as it tests for cytokeratin 19, which is one of the markers that the CTC test uses to separate out epithelial tumor cells from progenitor blood cells (which can confound the test results.)

    Next CTC and Ca27-29 tests are in mid-April.... will see what they show.

    I have been in touch with scientists at bth CellSearch (very disappointing reception from them...most unhelpful answers to my query) and from the makers of the Shingrix vaccine, which I received about 8 days before my last CTC test draw. That vaccine can significant stimulate production of IL-2 and INF-gamma, both of which can have pronounced anti-tumor activity. I am trying to discover if this can either have confounded the test validity, or perhaps be a true anti-tumor response. If it is the second, I will have to consult with an onc I know who is very active in immunotherapy research and get his inout about when it might be best to schedule the booster dose (typically recommended 2-6 months after the first dose) and also to see if it is worth pursuing IL-2 or other types of immunotherapy. Lots of unknowns and things to try to figure out.

    I am grateful that I have a receptive and openminded onc.

    Thank you both for your input.

    Elizabeth

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