Expat wrote: I asked about my CA19-9 level when I was first diagnosed, but was told that it is not normally tested...
Correct, but a potentially costly omission for the many patients that would respond to added cimetidine, maybe IV vitamin C and/or MK4(a vit K2), or show a drug response in CA199 data earlier or separately from CEA (like my wife).
(in all fairness, I made the mistake of asking my surgeon rather than my oncologist--had I asked my oncologist, I might have gotten a different answer).
In our experience, it was the surgeon who said yes. As for oncologists' "permission", we were already ordering it ourselves and had other subjects to cover or debate.
I gather that testing CA19-levels at this point (after 7 rounds of chemo) would be pretty useless.
Actually you could have any remaining fixed tissue stained with CA199, for perhaps $120-$400 depending on where you are an expat, if you can get a dr and/or path lab to play ball
. Cancer tissue stained with CA199 (and CSLEX1) is the primary data reference, serum tests have more interference and interpretative features. CA199 in the cell membranes appears to be more robust to chemo than (Kras mut) DNA. Also, CA199 staining is low volume and probably should be batched with some pancreatic cancer or gastric patients' stains, since individual staining is less common now.
For you, the serum CA199 test's value right now is reduced
. However, if CA199 were still ultralow, between 0-2 (considered a 7%-10% chance), that would answer some basic questions, essentially definitively. Higher values meant I would get the CA199 tissue test done. Playing catchup, is an imperfect art as to any test series' timing.
Do you think that it might still be advisable to ask for KRAS/BRAF mutation testing? Part of me would love nothing more than to remain blissful ignorant about this disease, but I do realize that ignorance is not really an option, especially at my stage.
I would carefully track the times between chemo and surgery, sample quantity and quality, and perhaps get several separate opinions (oncologist, pathologist). Right now, in standard clinical medicine, Kras/Braf mutations are used to exclude Erbitux/Vectibex treatments. In complementary, alternative, experimental medicine Kras mutations may be an indicator for IV vitamin C as an additive adjunct. (scientific
papers unequivocally link inhibitory treatments of cancer cells with Kras mutations to (IV) vitamin C)