How high a CA19-9 have you had/seen?

Posted by hubby11 @hubby11, Feb 7 9:53pm

I’ve done a little reading to see general thoughts on prognosis with really high pre treatment CA19-9 levels. The highest I have seen was an optimal cutoff pre operatively/pre treatment for survival greater than 1 year is less than 338.45.

My wife’s is over 100 times greater than that. I’m worried.

Any thoughts? What was highest pre treatment anyone has seen?

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sheridanb | @sheridanb | May 28 5:03pm

My husband's started at over 39000 last November. He's just finished 12 rounds of 5 FU... and last numbers were 645. Still very high, but compared to the beginning ... that's a 98+% reduction. Dr is putting him on a maintenance dose to give his body a break. But if numbers continue to drop then he feels there is no resistance to the drug so it would still be helping. Blood draw today, so we'll learn more in a couple days. Scans have mostly shown no progression of disease. But have to be honest, these 12 treatments left him sitting/laying down pretty much all the time every day for the last few months. I'm amazed hearing people can work or have somewhat normal lives while on chemo as this has been the hardest thing he's ever had to endure. Hoping for some recovery of energy and appetite.